I am currently helping a particular chap who, we assume, is suffering with ‘gluten withdrawal’. This is a pretty common phenomenon when you remove what are essentially very addictive (and opoid-like) substances from your body. I wrote about this here and here too.
P is suffering from neurological symptoms (mostly anxiety and depression) and not having a very nice time of it. He has been searching for reassurance on the internet (as we all do!) and came up with a couple of really useful links, (actually ones already on this blog – follow the second link above), but we share them again here for anyone else needing them:
First, a LiveStrong piece: Gluten Free Diet and Withdrawal which details some of the theories why it happens to some people. It doesn’t happen severely to most people in my experience with patients so far, but almost everyone gets some form of fatigue, hunger, headachy detoxy feeling at least.
Second, a Living Without magazine article, focusing on a case history of a woman who tested negative to all gluten (official) tests, but improved greatly after going gluten free (but only after a pretty nasty time of it): Giving Up Gluten
Thanks P for sharing that. And if anyone has any words of encouragement for P (and others who will no doubt read this when they need some), we would be really happy to receive them.
For me, I was ravenously hungry all the time, very fatigued but mentally hyper. Anyone else…?
Did it pass? I went through something similar just cutting out wheat and dairy. No dairy whatsoever – not even calcium supplement which was where I went wrong. I felt wobbly, shaky, extremely tired but had the brightest eyes, skin you could wish for but I felt ill. Couldn’t continue but then when I found out I should have taken a calcium supplement to help was annoyed my therapist didn’t tell me.
Hi, yes it did pass. I don’t actually think the calcium would have had anything to do with it though so not sure what you mean there. Calcium can help by putting a break on a detox sometimes, perhaps that is what you mean. You can get plenty enough more absorbable and better quality calcium in a non-dairy diet so that should have been fine,although it is indeed a good idea to take insurance multis etc when following a restricted diet whilst you get it right. Hope you feel good now.
It’s a time of unknown territory for P. I have had a roller coaster ride for the last 10 months. Went truley gluten free start of september but have had 2 boughts of contamination symptoms since then although the last bought I can’t figure out the cause – maybe withdrawal, maybe dust from making up hay nets to feed to horses, couldn’t see anything that I had eaten could have caused it, maybe my body is in a cycle as the gluten goes out …… It takes 2 – 5 weeks for the gluten to work through my body – starts at my head and works down. Always I end with major stomach spasms and lower abdominal bloating lasting 12 hours. After that it used to be quick recovery over 24 hours to normal health. Since tgf the spasms, not quite so severe, last longer, but I am totally exhausted while they occur, where as I couldn’t sleep for the pain, now I the desire to sleep out weighs fighting the pain. Recovery time after the spasms is taking longer and longer – took 4 days the last time and yet all the symptoms running up to that were far less severe. But during those final 4 days I cried a great deal for next to no reason, had no energy, no strength, wanted to nibble all the time, didn’t have it in me to talk or laugh, felt like my brain had shut down, got quite scared about the whole orrdeal and the uncertainty of what had caused it. Then suddenly the switch flicked, the brain light up and hey presto I was back!! – Hang in thier P – the light could turn on any time and it is so worth it!
Thanks for sharing that Caroline and so glad your light has switched on at last then – and not after too long, either, which is fab news if you started in September!
I would make a distinction here for anyone reading between accidentally glutening yourself (which sounds here what Caroline may have done in some of these instances) – it then takes at least 10 days to come back out of the system – and withdrawal which is a constant, wave type process in many cases but you are pretty sure you are not taking in any gluten. Most symptoms are down to accidental gluten but there is indeed a withdrawal once you are clear of it for long enough. After that withdrawal, comes the light, as Caroline calls it.
I went wheat barley, rye oats free in january, then corn free mid august then rice free in september. I did have a few contamination blips with the wheat in the first few months. When I stopped the corn I had several days here and there over the first few weeks of feeling I couldn’t cope and crying on my partners shoulder. I wonder if slowly coming of the grains in this fashion has helped reduce the withdrawal effects?
You did it the same way as me then – I did it in that order and also remember corn being the real baddie. I agree that slow withdrawal probably minimises the symptoms but sometimes people don;t have the time as they feel so bad anyway. Also, you have to think about the internal damage the grain is doing – some experts say it can get to a point where it is not reversible so I always have that in the back of my mind and encourage as quick as poss withdrawal trying to balance that with how the patient may feel doing it. It’s a difficult call…
Caroline, thanks for your post, i’m confused though, when are you getting the spasms? Whilst you were detoxing or when you were still eating gluten? I’ve eaten gluten my whole life but for the last 10 years around once every 2 months i get sever lower stomach pains for around 12 hours, so bad that i would rather be dead! i get to the point where i’m so tired but can’t sleep and go into a trance, and i want to throw up from the pain, do you get symptoms like this? they then go on for a few days but not as bad. i noticed when i cut back on gluten the symptoms subsided quite a bit, but when i went back on gluten they came back. I just don’t understand it because i never experience symptoms straight after i’ve eaten. Any advice would be much appreciated. Thanks.
Hi Sam,
Try staying gluten free!!! It has taken me some time to figure it out but I have multiple intolerances. What i originally thought was detox symptoms was actually gluten symptoms due to corn contamination. ( gram flour milled in a gluten free mill= corn contamination, fruit juices saying all natural and no additives = citric acid, from corn,doesn’t need to be declared) I am know totally grain free – and extremely strict with it – so I eat only fresh veg, fruit, grass fed meat and wild caught fish – see Mickis gut/barrier plans it will be very useful to you when you start out. I have been grain free for 5months and have had no major stomach spasms in that time. I have had corn contamination due to trying venison – which turned out to be sweetened with corn prior to slaughtering and eggs from my free range hens that don’t get fed corn but there is enough corn/wheat in thier pelleted food which supplements thier foraging to cause contamination. During this time I have typical gluten synptoms – fatigue, blurry vision, restless leg, tingling shoulder, poor concentration, then a severe migraine ( but not as severe as the bad old days) feel great for a week and then stomach spasms. BUT the spasms were very minor compared to normal and I didn’t need to go to bed – yippee – something positive! Then i hit detox – I loose the plot basically – get really narky with my partner for no reason, I get upset, I am hungry all the time and fatigue sets in. I have to stay really determined and focused to get through it – but I do! AND it is Worth it.
Good luck hope it is worth it for you too.and keep in touch.
Thanks Caroline for offering those great words of wisdom. And I hope you feel better remaining off the gluten – and preferably grains, Sam. If in doubt, look at having a coeliac test and the gluten gene test done which might answer some questions for you. Gluten causes damage and is not necessarily the same as a food intolerance where you get symptoms immediately. Perhaps you may be a so-called ‘silent coeliac’ which basically means you don’t have obvious outward symptoms but the damage still goes on inside regrettably??
Good luck and do keep in touch as Caroline says.
when I do accidentally poison myself it takes daaaaays to recover. The migraine being the worst, but it seems -altho I am grainfree- my symptoms just get worse as time passes.
When the headache passes, the withdrawal kicks in and that goes with proper depression..crying, black hole, felling utterly alone. Thank goodness for the patience and understanding of the hubby. Like Caroline says, at a certain point my brain goes *ping* and I’m back to my cheerful self.. odd.
I was wondering if anyone had experienced red dry swollen eyes and ears – I also get what feels like a tap turning on in my ears and fluid flowing out. The symptoms lasted for about 2 weeks the first time then cleared up overnight. Generally they come back- but less severe, for a few days each week. I didn’t experience these symptoms when eating grains so a little frustrating. My Gp just says thats gluten for you and a damaged body- hope she’s right! Also suffering from total fatigue now and then – and I thought I was over withdrawal symptoms after 1 month of being grain free – who was i kidding!
Happy Christmas.
Hi Caroline,
If it is coming and going like that, it may be contamination with grains. Don’t forget you will be far more sensitive to them now they are largely out of your system and you accidentally/unknowlingly consume some. Fluid in the ears is a really common allergy symptom and most people get skin type reactions and fatigue in my experience – have a think what might be going in would be my advice. Good luck, and have a fab Christmas yourself – TGF of course!
So glad of your advice!! Discovered to items I was eating that coudl be the cause – oh silly me!
Drink Innocent smoothies/drinks now and then as they say on the carton nothing added- how stupid was i to believe that! Emailed them and they replied that ascorbic acid is added to all thier drinks but the guidelines they follow say they don’t have to declare. They say this would be the same for all smoothie makers.
Secondly I eat goji berries once in awhile from waitrose. They are sweetened with pineappple concentrate- I haven’t checked with waitrose but I suspect that the pineapple concentrate will aslo contain ascorbic or citric acid as it would if you bought pineapple juice from concentrate in a carton.
Has opened my eyes to how sensitive i am and the pure labelling regulations!
A few less itmes in my food cupboard now but it will be worth it and I will but goji berries from the source you suggest in future!
Thanks as always for all your help.
That dratted ascorbic and citric acid, gets everywhere, you really have to keep your eyes peeled and your wits about you, it seems, if they don’t even label it all the time. Back to the old adage ‘if you don’t make it, don’t stick it in yer gob!’ or that’s my motto anyway! Glad you have discovered some new culprits and are hopefully feeling better.
What does ascorbic acid have to do with a gluten free diet? I am confused.
Hi Michele, welcome. This is a truly gluten free diet site (as in all grains contain gluten and some people need to avoid more than the traditional gluten grains of wheat, rye and barley to get well). Ascorbic acid is most often derived from corn, which is avoided on a truly gluten free diet. Hope that makes more sense. Read About Truly Gluten Free for more info on why gluten is not just about the gliadin grains.
Hi I’m so new and scared I just started 2 weeks I’m diabetic type 2 and withdrew all my meds was overmedicated way too long for a boat load of many different things very similar to Steve s situation ( diabetic warrior?) and my sugars are now great, my skin is clearing up, and I’m feeling more energized. However, I’m going thru a horrible withdrawal with vertigo nausea and feeling woozy and insomnia. Reading other people’s experience is re assuring me it s ok but I dont know how long I can tolerate the vertigo??? Any suggestions??
Hi Suzette. Thanks for your comment. Are you sure it is the withdrawal first of all? I would recommend you get checked out, especially make sure your blood sugar is stable, and see your local health practitioner for support. If it turns out the be withdrawal, you could try the Enzyme approach. Read the section in the ebook on Gluten Withdrawal and Enzyme Therapy. Hope that helps and you feel better soon. Let us know how you get on. Good luck.
I gave up gluten Jan 5th. Feb 8 to 10 I had intermittent vertigo.. Feb 15-19 I had vertigo almost non-stop. The newness I feel after the second episode, I’m starting to suspect withdrawal. I’m also doing due diligence with doctor’s to be certain, but I’m hoping, Suzette, that you and I are just on the path to better.
Thanks Sarah for that; I’m sure it will help both of you to know you are not going through it alone. Good luck both of you. Let us know how long it lasts and how you get on, won’t you?
I’ve just given up gluten in the last week. It’s not the first time I’ve been mostly gluten free but after a particularly gluten filled period I felt it was high time to knock it on the head. Only four days in and today my gut is not impressed with me at all! Initially it was just a bit of hunger day one, followed by sleepiness much earlier in the evening than normal, and today there are some proper complaints being lodged from my digestive tract. Very loose stools today an odd sort of nausea and general unhappiness. Very tired. Thankfully no cravings as of yet. My hope is that because it’s got uncomfortable quite early on, that I may be over the worst sooner rather than later… overly optimistic? Possibly!
Fingers crossed Sarah. Good luck.
My gluten challenge destroyed me, but it was the only way to find out if I was intolerant. Now I have thyroid disease, Candida, CFS, atypical non erosive reflux symptoms (as of 5 years ago but that could have changed), and 22+ food intolerances thanks to gluten intolerance. I went TGF 7 months ago, but was served food with hidden garlic (another intolerance) on quite a few occasions since then which has kept me ill. It’s recently given me gastritis after eating a burger laced with garlic powder. I was exhausted and had trouble taking a deep breath from reflux symptoms for over 9 hours straight. I suspect Sjogren’s having such dry eyes and nose. Sometimes my mouth totally dries out too. I know it can take 2 to 3 years to heal especially if you have 2 autoimmune diseases. I’m eating home now since restaurants end up putting intolerant ingredients into my food even though I caution them not to!
Very wise, Diane, I gave up eating out months ago; not worth the illness and I want to heal! I am determined to speed up the healing process and will be launching a self-help programme soon so keep your eye out for that and I hope it helps for you. I can’t do garlic either, was one of my first intolerances. You don’t realise until then just how much it crops up in foods!
I Started a Gluten Free diet this past Monday out of desperation of not having any other thought of what to do. Prior to starting, I was having some very disturbing neurological symptoms such as twitches in the arms and legs, very strange feelings in the head, chest pain, and all of the gastro symptoms you can think of. (I was diagnosed with IBS about 16 years ago.) Day one was uneventful but when I woke up on day 2, my real hell had started. I went through periods of time when I would continually get strange sensations in my head that lead to these points of extreme panic and distress. I became a basket case and was unable to find any relief. I am dizzy, often get nausea, and have bouts with diarrhea and then constipation. Eating at all became an experience as I quite frankly feared doing so at all because of my anticipation of feeling so ill afterwords.
Since January I have lost over 25 pounds. I would like to preface this with the fact that I often do feel hungry, yet my desire for self preservation and not feeling ill was what kept me from eating. When I drive, the nausea gets unbearable. After flying, I needed to sit in the airport for about an hour before I could get enough strength to get up and carry on. Right now, I have primarily been in bed for most of the week as I am almost useless. Newer symptoms include a change to my hearing when I listen to music. It sounds to me like the singer is in a tunnel. Sleep has become a challenge as insomnia has taken over. When I do fall asleep, I wake up often with either pain in my arms and legs or numbness.
I have a 2 year old son which is keeping me going. My desire to see him grow up is my driving force. I have gone through every type of medical test available and everything comes back pristine. Your threads here have given me hope that there will be a day that I will be normal again.
So sorry to hear you are having such a rough time, Vince. many people who come on this site are the same, so you are certainly not alone, sadly. I hope you start to feel brighter soon. Please do download the TGF ebook and read about how to do the diet properly to get yourself well more quickly and to read about enzymes that may help this withdrawal, if that’s what it is (always see your doctor for anything that continues, of course). There is a whole section in there about withdrawal which will help. Hope it helps.
Im a 42 year old male that has had stomach issues as far back as I can remember. For the last two weeks I have experienced strong nausea, dizziness and a general feeling of sickness. My Doctor is currently checking my blood work for Celiac Disease and I should recieve the results today. I’ve been Gluten Free for 3 days and I’m experiencing some irritating symptoms. Nausea is to the piont I can hardly function. I have noticed that a couple of lymph nodes are sore and my stomach is very uneasy. Soreness in my back and right side under my ribs around my gallbladder area. (had gallbladder checked) I hope this all will be related to Celiac and I can move on. What other symptoms could I experience during the withdrawal period.
Hi Alan,
I hope you are feeling better now and that you have the result of your celiac test soon. Re withdrawal symptoms, could be anything. I suggest you start by reading the comments below and see what others have said and my responses. Hope that helps. Let us know how you get on with results etc. And don’t forget: a negative celiac test does not mean no gluten illness (ooh lots of negatives there but you get my gist!). It is not overly reliable and will only show positive if you happen to have the antibody types looked for. That’s why I recommend the gene test and case history/symptoms/relief on GF diet.
I managed to go TGF for about 10 days. For the first three days all I could think about was eating starch. I would wake up and think about the “GF” mac and cheese in the pantry all day. But after that 3rd day, this went away and I started feeling better than I had in a long, long time. What happened? I let the desire for some “GF” beer get to me, and fell back into it again with the other “GF” grain treats and things. I’m gearing up to do it again, for real this time.
Well done, Paul, for making a start. And don’t worry, that happens to us all! At least you now know you feel better when you do it. For starches, by the way, have you got the TGF breakfasts book? I couldn’t do it without some of the recipes in there personally!
I went gluten free last week and have had some symptoms that seem similar to what I experienced before going gluten free only more intense and in a quicker cycle if that makes sense. I went gf because of symptoms like bloating, reflux and weight gain but also read up about the effect of gluten on mood and anxiety which hit me hard from time to time. The first 2 days I felt great. I had more energy, no bloating (even after a large meal) and a great mood. I am on medication for the reflux so am unsure if it has been affected. Then on about the third day I had some fatigue and real difficulty getting going. I have had brain fog coming and going with low energy as well as some anxiety and moodiness swinging in and out. Yesterday on about day 7 I had some diarrhea for most of the morning and today some anxiety with general stiffness all over. I have hope that all of this will pass soon and it kind of feels good that it’s happening as a little feedback to what may be happening internally. I have also felt pretty hungry first thing in the morning and for much of the evening soon after dinner. I’ll try and repost when I know more. Thanks everyone for your posts. There seems very little official info on the detox process from gluten. Also I am still eating rice and corn products. How is this a problem if there is no gluten in them. I am pretty sure I am not celiac but am waiting on results. Thanks
Andrew
Well done, Andrew. Sounds pretty typical. As for rice and corn, you can see this site is all about the fact that some gluten sensitive people, coeliac or not, can be sensitive to other glutens, not just the traditional gliadin ones of wheat, rye and barley. Rice and corn both contains a kind of gluten and you can be sensitive to those too. Hope all goes well. Fingers crossed for you, let us know.
There’s a product that has helped me a great deal with reducing anxiety and boosting mental clarity that may be helpful to you if you can get where you are. It’s called ‘Tao in a Bottle’ from Dragon Herbs. I believe it could be considered by Micki to be TGF, but I’m not sure.
Nope, sorry Paul.
What about it is an offender Micki? This supplement stuff is mind boggling.
Contains rice powder. For supplements, you know you can get the supplement report 2 which contains TGF safe lists from two US companies..
Hi, I have struggled with food intolerances causing migraines, visual disturbance, digestive problems all my life. I have kept my gluten intake low like everything else – till recently when I went a number of weeks without gluten. Then had the first of a series of reactions, blisters, painful throat, cramps and depression to accidental gluten. Amazingly my digestion is normal – I can’t remember it ever being normal before. This week I feel like I’ve been hit by a bus! Eyes are swollen and red, soooo tired, I’ve have been in bed for days. Has anyone else reacted like this to withdrawal? My daughter said I look like House did when he came off his meds!
I have reacted like that to corn contamination – and thought for several weeks it was withdrawal.
Have continued to become more and more sensitive and now even an non organic slice of apple or a slight splash of non organice cooking oil cause a reaction in head and stomach, imflammed hands and toes and fatigued- and my worst for my partner , severe grumpiness!
Good luck hope you are on the mend soon
I hope you mean more and more sensitive to grain stuff and not others – were the apple and oils previous trigger foods or do you mean they’re contaminated/new, Caroline?
Could be, Fin, and sorry to hear you’re feeling rough. As Caroline says, it could be withdrawal or hidden ingestion. It could also be unrelated so if it continues, make sure you talk to your doctor. Plenty of rest, fluids and make sure none is getting onto you. Hope you feel better soon. Have you got the withdrawal section of the ebook? That might help.
Caroline here,
I am still trying to figure the intolerances out. Definitely more sensitive to grains. Was eating a few non organic veg in a mainly organic diet – Have gone totally organic for the last 3 weeks – what a difference. During that time I have reacted to a slice of non organic apple and a piece of beetroot cooked in non organice oil – Have purchased an organic sunflower oil but not yet dared to try it. After a week of no legumes tried some green beans for tea yesterday and my hands turned what, up to going totally organic, was thier normal orange/ blue colour today – returning to a more normal colouration tonight.
Have lost quite a bit of weight over the last 2 months, think it was detox as urinating a great deal, sometimes quite urgently!- all tests by the gp have shown up nothing. And it is calming down now but seems to increase when i eat something I shouldn’t – non organic or the beans. So nice not to have swollen painful blistering hands- suspect my whole body may have been swollen and i lost it through urinating – sounds very rude, sorry. That would also explain the weight loss ( a stone and a half). Feel great and energy levels have been good so not too worried – I think it may just take awhile for the body to re adjust. – But any help gratefully recieved!
Probably reacting to agrochemicals either because they are just toxic to you or, more likely, because they are often derived from corn. Again! Do you mean your hands turned ‘white’ – wasn’t clear as it says ‘what’? So glad they are settling down – those legumes coming out does seem to help which is why I put that as part of the Barrier Plan. Weight loss good if you had some to lose – I found the same thing and so do others – it seems the body holds onto a lot of fluid because of the general inflammation in tissues, which of course then comes out in various ways depending on your body’s chosen detox mechanism – yours seems to be piddling! Make sure you actually drink enough water to assist the process – which I know means more piddling! Better out than in. Sometimes the magnesium can be very detoxifying so you could cut that down a bit if taking it and see if that slows it down if it is not copable. Generally, though, in the absence of any kidney infection, diabetes or anything like that, I would see extra piddling as an excellent sign!
Very reassuring to read your reply – I had so thought it might be a detox process – and feel sure it is- given swelling diminishing. The colour of my hands is a good indicator to the gluten in my body. I was diagnosed with raynauds syndrome 20 yeard ago. – but they could never quite explain it properly as I missed out the classic white phase – when the hands go pure white – and went straight to the blue/orange/pink colour. Over the last 15 years this has been the normal colour of my hands ( I used to sit on them or keep them in my pockets to avoid peoples comments) along with swollen finger and toe joints and cracking itchy skin. I look at them as I write and don’t recognise them as my hands! So I have to think if that was visible on my hands, and my feet, what was going on inside my body that i couldn’t see!
So glad i seem to be finally making it to a truly gluten free body – it does take a lot of time and dedication though – thank you Micki – would have taken me a lot lot longer with out you!
My pleasure. Makes it all feel so worthwhile when I hear of improvements like that. Well done, you. Keep at it.
Is it common to have a sore throat when withdrawing from gluten? Have been gluten-free for about a week and a half but have had a sore throat on and off for about a week.
Hi Gail, I have been gluten/ dairy free for just over a week now and have exactly the same thing – I’ve been waiting for a cold to break out as I’ve had a sore throat, and flem in nose/throat all week. Also suffering very badly with depression…couldn’t work out why I kept bursting into tears until I found this website! And irritable. Just like there’s a big black cloud hanging over me. Hope it’s not going to last long as have four young children to care for and all I want to do is curl up in a ball somewhere and be alone!
Poor you, Naomi, I hope you come out of it soon. Mood changes are unfortunately pretty common but thankfully temporary. The biggest cause of depression I have found in my clinical practice is wheat intolerance so when it is coming out of you, it’s not surprising it plays havoc with your mental state. Hang in there and seek help if you need to. Plenty of rest, nice things and give those kids a hug!
And hope your sore throat is improving now, Gail, too. I have come across sore throats a few times. My own oesophagus used to swell terribly with corn and was quite sore on occasion when I was coming off it. Could be a bug though, of course, so get checked out if necessary.
HI there! I am finding all of these posts so helpful!!! I am now just under three weeks of being gluten/wheat free, and feel terrible! I wondered why I just started to feel so badly seemingly out of the blue, when I wondered if it could be withdrawal from wheat and gluten. Sure enough, I am finding more than enough information that it is indeed real and fairly common. I have very bad headaches (much like the ones I get when I try to quit drinking coffee), fatigue, I was bloated in the stomache, and a sore gland in my throat. I am thinking the sore gland is a result of the build of toxins trying to find a way out my body. Does that make sense? I have to admit, I have been blindsided by this part of quitting gluten/wheat, as I was mistakingly under the impression this was going to be a walk in the park! My Dr. seemed clueless about gluten withdrawal, but I am %100 sure that is what I am experiencing as these symptoms coincide with the complete removal of wheat and gluten from my life. I guess i also really need to hear from someone that this WILL pass, and is just a part of the process!!!
Well, I’ve never known anyone who continued gluten withdrawal symptoms so, yes, it WILL pass! Well done, Kristin, keep it up. Be kind to yourself, plenty of fluids and rest – see your doctor if in any doubt, of course. Good luck, let us know how you’re getting on.
I went gluten free 2 weeks ago and I’ve had all sorts of symptoms that I relate to withdrawal symptoms. The worst is the anxiety and a ringing in the right ear.
Yes Susan! I found the anxiety to be quite intense! Depression too. And fatigue. lol. SO wish I had quit gluten a lot sooner now that I know from experience how real all of this is! And yes…it does pass! Although I feel a few of the symptoms if I accidentally eat something with gluten in it.
Sounds nasty, Susan. Talk to your GP re the anxiety if you need to, of course. Those symptoms do crop up a lot in the withdrawal stage for some people it seems and, as Anonymous (?!) says, they do tend to pass quite quickly thankfully and reappear again with accidental ingestion. Good luck; let us know how you’re doing. Fingers crossed for you and don’t forget to look at the enzymes on the Gluten illness page – they can really help during that stage.
I also experienced anxiety after going gluten-free and contributed it, in part, to a vitamin B deficiency.
Hi Gail, yes I’m sure that would contribute – as would lack of magnesium, calcium, zinc etc. Bloomin malabsorption…
Sorry…that Anonymous comment was mine. I forgot to sign in. I just re- read all these posts and would like to tell Vincent that at one point in my life almost every muscle in my body twitched. Even my facial muscles! I also had all sorts of weird numbness and tingling etc. Anyways it could be anxiety. That is what mine end up being and I was shocked. Never undrestimate the power of anxiety! Hope you’re feeling better Vincent…
Indeed, good advice, thanks Kristin.
I know a lot of people lose weight once they get off the gluten but do people GAIN weight as well? I’ve always been naturally thin and I’m wondering if it’s a fast metabolism or the inability to process foods correctly (gluten intolerant). I have zero symptoms or red flags that say I’m gluten intolerant, I even come from a heavy Italian family with a long history of pasta and bread without any digesting problems. I’m playing around with different diets (I’m training to be a health coach) and right now, it’s gluten free. This is day 3 and I’m STARVING! I’m trying to load up on extra protein to slow my digestion but it’s not working. I also woke up with a mild headache this am but I’m also battling a cold (yes, a cold, my kids had it this weekend). I don’t have aches and pains, insomnia or any other symptoms stated above. I’m downright CRAVING bread (I cheated, I had one bite of sourdough before turning to here…it’s made me feel sooo much better and miraculously, I don’t feel severe hunger minutes after swallowing the bite). Other than that controlled slip up, I’m staying away from pasta (noooo!), pizza, and other wheat items I love.
Going back to the weight, I’m trying to gain a few pounds (it takes years for me to gain 1-2 lbs) and I’m wondering if I will gain some weight with lack of gluten in my diet. It’s sure making me eat more food though! I’m starving all the time, it’s like I’m pregnant again!
Happened to me too! I actually started to crave sugar a lot, and I’m a salt girl! It does pass though. And I will almost guarantee that your headache is from withdrawal. If I slip up and have some gluten, I get the headache all over again. It all does pass though 🙂
Kristin
Serena, most people in the end tend to gain weight if they were too thin before mainly because they weren’t absorbing food before and do once the gluten has gone and absorption improves. Listen to your body’s need for carbs and eat lots of sweet potatoes, squashes, dates etc etc. And I agree with Kirstin re the headaches: probably withdrawal but do make sure your blood sugar is kept nice and stable at this point and eat every 1-2 hours or so. Headaches are always made worse by dehydration and blood sugar drops. Good luck, let us know how you’re doing..
Thanks. I am about 10-15 lbs under weight as a side affect of not being diagnosed soon enough with contracting Giardia. I’ve never been able to gain weight easily and I lose it at the drop of a hat. I’ve regained about 5 lbs in 3 years (that’s at an unheard of speed). I can no longer eat bananas (I figured out I have a food latex allergy), I can’t digest red meat very well anymore (but really, many people can’t and don’t know it) and now I’m testing the gluten thing.
I’m definitely a carb girl: my body needs carbs for the energy and blood sugar thing. I woke up yesterday morning and felt so weak (like I had the flu and just now my body is wanting food). Sweet potatoes are a great idea and I was craving a baked potato last night. I ate about 2 cups of a bean/quinoa mixture for dinner and about 2 cups of brown rice and veggies for a snack afterwards and went to bed hungry.
Another reason why I haven’t felt very good this week is that they are harvesting peanuts in my town and I have a peanut allergy. Makes me feel terrible (headaches, sore throat, swollen glands and sinuses) so I’m not sure what caused my headache..lots of reasons really. I rarely get headaches, usually it’s environmental, sometimes dehydration. Who knows? It could very well be the withdrawal!
Oh, can it also cause the release of water retention? It seems that I’ve been bloated this week BUT my cycle is coming this weekend which sometimes causes bloating. I’ve been going to the bathroom 3 times more than what I’ve been drinking and I’m wondering if the lack of gluten is requiring less water retention in my body…
Thanks for all your input! I’m going to weigh myself now and then reweigh again in a week or two and see if I’ve gained anything. (Currently at 97, should be between 105-112)
You could be detoxing and flushing your kidneys out certainly. When you have an allergen in your system you hold onto a lot of water – the cushion effect I call it – so when you remove that allergen, the swelling comes down and out. You will lose weight though don’t forget as the water weighs heavy!
I experience the water loss when I have gluten inme and detoxing – I feel my body fights the gluten contamination through over active bladder uncontrolable like Niagra falls sometimes! Lost quite alot of weight when i got on top of the gluten problem but suspect it was swelling as I have, several times, watched fluid flowing into my hands when i have gluten in me. My jeans will go tight around my thighs and so on – stop the gluten going in and within days normality is restored followed by depression and migraine – intensity related to strength of contamination. TGF is the only way for me. Good luck Serena, i hope being TGF answers many of your problems.
I have to say these posts have been really hekpful to me. And there I was thinking that I’d been through everything on here. I can’t really recall having any withdrawal but I’m sure I have mishaps and then get the headaches etc. Gave up gluten about 3 months ish ago but only gave up the rest of the grains a few weeks ago. Have been pretty moody since 🙁 but I’m guessing that the period of withdrawal is over now? At least from the ‘big give up’?
You wish ;). Should be, let’s hope so. Some don’t get withdrawal and others do, Let’s hope you’re one of the lucky ones. Mood certainly does change with it. Glad posts are helpful – pooling our experience!
I just wondered which bit you were referring to Micki when you said “Read the section in the ebook on Gluten Withdrawal and Enzyme Therapy”? Is this in with the Barrier plan? Sorry, have looked at SO many things today, trying to get things straight in my head, am so confused recently!
I had never even read this post before, with it’s wealth of comments that follow! Mind-boggling but really useful and comforting to read when feeling very lost about bizarre symptoms rearing their heads!
I’ve been suffering withdrawal since the discovery that I was glutening myself on a daily basis with pistacio nuts – completely stopped them and felt like crap for ages after…complicated by the fact that I had also been eating quinoa until then – stopped that and believe I had been eating the contaminated stuff because the withdrwal seemed to last…followed by my extreeeeeemly reluctant acceptance about and giving up of legumes and all things lectin. So I don’t know where I am anymore, the low mood, lethargy, fogginess, emotiveness (is that a word?!), lack of enthusiasm continue..and I’ve no idea if it’s withdrawal, a general decline in nutrients etc a problem with enzymes (causing the malabsorption problem) (my basal temp readings also v low) or just depression at the state of my health! (I don’t think so, I’m a toughie) But it’s a major hindrance because I have been so clear headed and feeling great that I find this very scary, like a return to everything I thought I was dealing with when I first started being TGF (quite a long time ago now)….
I (stupidly) went to a wedding yesterday…the hosts were amazing, my frend’s mother in law cooked for me herself, kept it dead simple and clean … but the fact remains that it was cooked in someone elses pans in someone elses kitchen etcetc. I am not feeling great today and have a very strange swelling on my arm – could this be an effect of accidental gluten ingestion??! (would it manifest this quickly?) It’s a lump about 2 x 2 cm – looks kind of like when you have a nasty spider or mosquito bite and the poisen spreads out… my veins are all swollen and visible too…anyone else had these things happen? (Sorry, only meant to ask about the e-book!)
Hi Becky, the bit I am referring to is actually in the original TGF ebook. You can see the product I am referring to in the Which Gluten Illness bit under behavioural reactions. I am planning to do a separate factsheet on gluten withdrawal when I get a mo and will incorporate the use of enzymes into that.
Sorry you are feeling rough – does sound like an ingestion of gluten somewhere doesn’t it? It could be the nutrient depletion too, though, that’s not helping and that’s why it is important to include the general nutrient prescription in the barrier Plan protocol as we are messing around with our diets and those restrictions will necessitate gaps being plugged. Not sure why pistachios would be glutening you…? That said, iIreacted to some myself a while ago!
Not sure about your arm, sounds more like a bite from something to me but then I have seen so many weird gluten symptoms, who knows?! Get it checked out if in doubt.
Hi Becky, coincidentally I also have a bite on my hand (only since your message) which has flared up massively. About a cm around and very red and itchy. Do we know of a ‘safe’ bite cream/natural remedy?
Vit C powder/quercetin powder rubbed in – natural anti-histamine??? I would use lavender/teatree essential oil probably.
Just found this site today. Very interesting. I decided to try GF this past week and have had many of the same symptoms. Had a very intense headache the first day followed by aches and pains all over and a general dizzy feeling. For those individuals with anxiety, try shallow nose breathing. This means no yawning or sighing, keep the mouth closed. Aside from a kitchen goof up yesterday with accidentally consuming a small amount of wheat, I find this incredibly easy to follow. My cravings and hunger are in a much happier place. I am wondering if oatmeal is acceptable to eat?
You are probably finding it incredibly easy to follow because you have just gone wheat free, no? Oats contain gluten so you have not gone GF if you still eat oamel I’m afraid… same for rice, corn etc.etc…this site is packed with info, so have a good read! Good luck 🙂
Good reply, Becky, thank you. Heather, hope that helps. It depends to what level you want/need to go gluten free. Check the TGF Food page for a summary of the three ‘gluten free’ levels – traditional, truly gluten free and barrier level. Good luck, let us know how you get on.
Interesting article on withdrawal http://www.livingwithout.com/issues/4_8/giving_up_gluten-2024-1.html nothing we dont already know but nice to read ot from a totally different source affirming things!
I think I’ve linked to this one before, Debbie, thanks though for reminding us: always useful as you say to see others saying the same things! Makes you feel less mad 😉
Thanks everyone. This makes me feel more happy! There’s more to it than I first understood. I have coconut flour and am wondering about buckwheat as well. It’s not a grain.
Coconut: great. Buckwheat is actually gluten free but is often cross-contaminated so do be careful with that.
I have been “wheat free” – but not corn or rice – for about 5 weeks now. I’ve lost 5 pounds. Disappointing since a desire to lose weight was the major reason for doing this. What I am experiencing in the way of withdrawals has been diarrhea (fixed with a mega probiotic which I am still taking), and the last couple of weeks, disturbing mood swings. Mostly the down side of things emotionally. Has anyone else experienced this and how long does it last?
I would always combine a wheat removal with liver support to avoid that kind of withdrawal if poss. See here for the detox programme which is grain and dairy free and gives you a bowel and liver supportive protocol whilst you detox off the grains. Alternatively, look at the full Gut Plan which will give you a wheat and dairy free detox plan rather than grain free. Good luck.
Don’t know where to start. I’m 59 and have had terrible stomach problems for past few years. My GP sent me to my surgeon for re-examination of a double hernia surgery in 2005, also to a urologist and to a gastro. for a Colonoscopy. I had CT Scan also. All came to conclusion that my problem was not in their ballpark. Discomfort goes away for some time then comes back with a vengeance. It has come back and I bloated terribly. Gained 15 lbs. which is very abnormal. I have COPD so because of the bloated chest my breathing is at risk. My wife is a Family Nurse Practitioner and told me she really thinks its due to Gluten. I went cold turkey two weeks ago and notice some changes considered good, but a lot more that are bad. I am exhausted, get shakey without protein, still bloated and sensitive, hard to deal with and now I have panic moments where I wake up and cannot take in air. I sit up alot at night so I don’t stop breathing. I find that I am so bloated that it is restricting my breathing, whether asleep or awake. Sure do not want to go back to doctor to get that hypochondriac look. Any thoughts?
It may be that you are still taking on some gluten which would make your reactions now more acute as it has been out of your body, Russ. Look carefully for hidden sources. Consider too if you have cut out all grains or just gliadin grains – read this site to realise that there is a type of gluten in every grain not just wheat, rye and barley and some people are sensitive to grains because of that. Also, you may be suffering withdrawal. Look at the which gluten illness page and try the enzymes. You should always see your doctor, of course, though, so do please do so.
Easing the withdrawal…one must address candida along the way…with perhaps with CandiGone by renew life and powerful probiotics, alternating strains taking them 2-3 times daily. A parasite cleanse helps also. Be gentle with yourself and pay attention.
Careful of CandiGone – how are the extracts made – grain alcohol…? Use the TGF safe ones in the TGF Candida Plan please. Nice comment though, thanks Red Moon.
Oh, gee…thanks for bringing that to my attention…always got to be lookin’ ! 🙂 Just double checked and called…ethyl alcohol, a.k.a. grain alcohol…although they claim no wheat not gluten at all when being processed. hmmm…it didn’t seem to bother me when I used it before, but all the better that we discussed this for others! As we speak I have nearly cracked the code on men’s hair loss…I did order a sample of DAO. Shocked it was no problem getting them here, just because….then again it’s the USA….not Canada where I am a lot. I just received them! I am anxious to give them a try….but I don’t even go there too much with foods like that. Thanks again for posting about those as I have been looking for a quality brand. Have you had a chance to try them?
Some alcohols come from beet or cane sugar so worth checking, may not be grain. Again, I haven’t seen the DAOsin – is it TGF safe…? I know I saw one that wasn’t somewhere so worth looking at the pack. Pls report back to us.
Oh, I had clicked it from your website! hmmm it is from the UK… let me know. 🙂
Ah, but I didn’t say it was TGF safe – I mentioned it in case some of you were histamine intolerant to find out more info, and it was on the PHC blog too. You have the packet there – what are the ingredients…?
hmm…no, I guess you didn’t. 🙂 okay, there is a lot in there, the DAOsin..Stabilizer: microcristalline cellulose, Capsule: Hydroxypropymethyl-cellulose, Stabilizer: Sucrose, Vitamin: Ascorbic Acid, Stabilizer: rice Starch, Enteric Coat: Shellack, stabilizer: Hydroxypropylcellouse, pig kidney protein extract with 7% diamine oxidase (DAO) Thickener: polyvinlpolyyrrolidone, Seperator: Talc, Thickener: Acetylated starch, Thickener; Carboxymethylcellulose, colour: Titanium Dioxide, moisturizer: Glycerol
okay, let me know what you think. Thanks.
Aah, def not TGF safe then! Useful for histameanies without grain intolerance. I will update the post, thank you for listing the ingredients for us.
You are so welcome! Pardon my ignorance on this, but what in it would cause an issue? Thanks
ascorbic acid, starch, rice starch etc etc. You need the list in the TGF ebook or Barrier Plan, then you can assess anything yourself. Tis a minefield!
Thanks for this post and all the comments! I have given up wheat (and gluten, for most part) some 6 months ago. Started as a weight loss, but then as I began learning more about grains, I now continue with a low-carb, gluten-free lifestyle because it just makes me feel sooo much better. Unfortunately, I am still finding wheat in a LOT of products where I wouldn’t expect it. Say, chocolate or some spices… I recently had a chocolate craving which lasted for about a week, and it was for a particular kind of chocolate. Am still recovering.. it turned out it had wheat gluten :S so, I have had severe headaches since then (10 days now) and was wondering whether they are really related to withdrawal. Wheat is really such a poison :/
Good point, Annie. I often think contamination/ingestion first and then withdrawal if that has been ruled out. Hope your headache goes soon then. You might want to look at the Bringing A Reaction Down factsheet for next time!
Hi Micki, I’m quite new to the gluten and diary free lifestyle. I have recently been diagnosed with gluten and lactose intolerance. At first I had no idea what was going on since I am tired and hungry all the time. When it started to get completely out of hand I decided to consult Dr Google and that’s where I found you article, which inherently made me feel so much better, because I’m secretly going crazy, since it feels to me that no one understands my situation. I’m very glad to hear that the withdrawal symptoms will pass, I would just like to know how quickly, because I’m an athlete and I find it difficult to exercise, due the fact that I’m so fatigue all the time. I also really do hope the extreme hunger pangs will stop soon, I find it quite annoying. I’m 19 and it’s been a really tough year for me and mostly because people do not nearly understand the scope of my disease, I’m also still learning a lot. How do you deal with people not understanding that you cannot have a piece of garlic bread or a cookie? I get bombarded with questions.
It’s a true learning curve – for us and families/friends, isn’t it, Udette?! You do get used to it. No-one can say how long a withdrawal will last but use the enzymes I mention on the gluten illness page to help yourself. I would also think about if you are still accidentally consuming some, and include a couple of protein drinks (not whey!) in your diet during this transition period. Eat very often – every 2-3 hours for now whilst your body is adjusting and make sure you take a good multi vitamin and mineral, fatty acids, vitamin D and a probiotic to ensure the much-needed nutrients – gluten free versions of course! Ask if you’re not sure which ones and I will advise – tell me which country you are in though! Hope that helps a bit and glad you found us 🙂
I’m South African. I do take safe vitamins. I struggle to find supplements such protein shakes which are both gluten and lactose free. I read on a page i”ll quickly go search for it and post a link to it here. On this page I read that the reason why we get these hunger pangs is because our body is searching for a new energy base, since gluten was that base. I would like to know what that new energy source end up being? Also it’s also written there that the reason we feel fatigue is because gluten boosts the serotonin levels in our brain and now our bodies also have to discover an alternative way of boosting our serotonin levels. The information on the page makes a lot of sense and it completely explains why we have been feeling the way we do.
Yes, makes a lot of sense. As I say, there is definitely an adaptation period. I also think that our absorption picks up a few months after the gluten has come out and we get more from food generally but, of course, until that happens we need extras. Try pea protein shakes like this one and perhaps add some carb into it like honey.
Here is the page I mentioned. http://www.livestrong.com/article/246282-gluten-free-diet-and-withdrawal-symptoms/
Interesting reading about the hunger cravings. I find that I want to eat continualy all morning but after lunch the hunger settles down and I stop being fixated with snacking. I am a not nut no seed barrier plan person so it could simply be that i can’t get enough food into me in one main meal so need to graze like our paleo ancestors did. Equally I am always fighting my system to stay TGF- It settles down for a few months and then moves to a higher level of sensitivity so I have to do more research and find out the cause – then it’s withdrawal again. ( causes tend to be such things as string on meat, got addicted to a non stick wok ( oh silly me I do know better) , organic cooking oil but in a plastic bottle – think the corn used to make the plastics must leach out into the oil and so the silly little bits of contamination list go on. It is a never ending battle- A well worthwhile on though as I am so much better compared with 2 years ago!.
So pleased to hear it is worth it for you, Caroline. I feel exactly the same and have been doing it for the same time. We feel much better on eliminating the grains etc but we now need to get the hypersensitivity controlled, don’t we? That’s what I the barrier plan is for but working up to actually getting the protocol in is hard in itself for some of us! You have to be able to take it for it to work! I wonder what you are having for brekkie then? I definitely find the nuts and seeds help me so I can imagine not having them would be tough.
Non-stick wok – explain? New one on me…
Brekkie for me is think out of the box! Have either meat or fish and some veg simmered. Salad and meat od fish for lunch and another meal similar to brekkies for tea and lots of organic fruit and veg snacked on in between.
I was using a non stick wok for cooking and have read that the nonstick can be a source of corn contamination – I seem to be very sensitive to corn .Saw myself going down hil slightly over the last few months. Changed the non stick pan for a stainless steel one and got heaps better. However I also went away for a week around the same time – have been back a week and the skin around my eyes and eyelids is getting a little red and inflammed again so perhaps the wok was ok- can’t quite figure it. I’m a gardener and work with horses but use a type of grass ( miscanthus) for bedding not straw so shouldn’t be inhaling gluten products from that. I also look after hens and am very careful when I have to feed them – possible source of inhaling gluten product – will try a dust mask over the next few days and see if that helps. Or is it something in the tap water in this area? – So many possibilities to try- deep joy first chaleenge find the culprits, 2nd challenge challenge the culprits! Challenges, challenges- life would be boring without a challenge- Happy to be bored once in awhile though!
Know the feeling! I would like to stop challenging all the time too. My guess would be the chicken feed. Interesting re the non-stickness. I will keep my eye out for more on that. I wonder for brekkie, could you do coconut as it’s not a nut? Smoothie? Yogurt?
Thanks for your info. I too feel fatigued but my mind seems less weary and foggy…. Weird!
Good start, Jessica. Perhaps now you need to start replacing your nutrients with a good multi?
Hi, I went Gluten Free Wheat Free around Christmas 2012. Since then I have stopped stomach pains and diarrhea, but have become very lethargic, no appetite, cranky, and depressed. It is now the end of January and I am in high hopes that all of these awful feelings with go away with time. Can anyone tell me if you have felt like this. I buy all Gluten Free foods and they all taste terrible to me. When it comes time to eat, that is the last thing I want to do. I have lost about six pounds already. I would appreciate any help from anyone out there! Thanks!
It is important to not eat any of the processed “GF” foods. They are made from things that are just as bad as wheat etc. Eat lots of organic veggies, some organic meat, eggs, chicken and fish, and you will have to figure out if you are ok with dairy. I can say from experience that GF processed foods and things like GF beer will just prolong your misery. Go as Paleo as possible.
Hi Judy,
I agree with Paul. You maybe experiencing withdrawal symptoms or it could be intolerance to other grains such as corn. Try going as natural as possible and then challenging yourself. Have a look at Mickis truly gluten free info for more help.
Good luck- it is not easy but when you get the diet right for yourself it is so worth it!
Agree with everything said there. I would immediately think: are you malabsorbing and do you need to take a good multi nutrient supplement during this time of adaptation? Are you reacting to something still in your diet – I would bet my bottom dollar it is another grain? Could it be withdrawal – see the which gluten illness? page for an enzyme that will help you deal with any morphine-like withdrawal.
Put ‘gluten whiplash’ into the search box – people often become more grain sensitive when they have got rid of the main ones and you seem to be eating the corn/gluten ‘free’ processed foods. I would definitely agree with Caroline and go trulyglutenfree. Look on the Gluten Treatment page – I updated it yesterday to show the stages!
Hope that helps. Good luck – let us know how you are getting on.
Hi, from what I can gather it takes a good couple of months for gluten to get out of the system and another couple for the body to restore. I assume then detox symptoms can persist for this length of time.
I went wheat gluten and cows dairy free last year, as advised, at the same time as undergoing help withME?Fibromyalgia? psychological issues. I had months of symptoms worsening, I finally began to feel much better.
I gradually became more and more lax and recently had a few of weeks of full gluten and milk intake. i began to feel awful and had a lot of nuralgic pain and became sort of crazy, brain foggy, lacking attention and severe memory issues. Are others experiencing the craziness too? I am sure a GP would diagnose dementia, so avoid like the plague! Many if the symptoms i have exerienced at times over the last twenty years or so. Also, does any one know if the withdrawal will be quicker, as I had quite some time off weat and cows dairy before neglecting the diet?
Hi there, I’m glad at least you have found your answer to keeping well but you can see that putting the foods back in just brings the symptoms back. Often, when a person has removed an intolerance/sensitive food and then puts it back in, they will experience symptoms they had previously more acutely – it’s like the body is screeching at you to get it back out, I always think! Generally, you don’t detox all over again – but this depends on how much you’ve had again and for how long – but hopefully it should take the normal 10-14 days to get it back out of your system again. Look at the behavioural reactions on the Gluten Illness page and take some enzymes to support yourself. See your doctor if you need to, obviously. Good luck!
I can relate. Whether it is with or without gluten in a detox, i get that infamous brain fog but my mind can still have a million and one racing thoughts. I get high bouts of anxiety and a feeling that you are never quite full. Cravings are horrible, but dealt well with fruits. Gluten gave me far too many sleepless nights without me knowing it. My legs would be restless or i would have this strange compulsion to rub my legs together like a cricket almost in order to get comfortable. Even if i got seven to eight hours i never woke up feeling refreshed. Detox is the worrst but when it is gone the mental clarity is amazing!! Never have cheat days like i tried at first. They only getyou rehooked.
Thanks for sharing some good advice there, Beckers. I SO recognised that cricket leg thing but most often mine was a feeling of not wanting my leg skin to touch anything, let alone the other leg! Get it rarely now thank goodness.
I am familiar with gluten and wheat problems, as my daughter has severe eczema. I took her off all grains for about 6 months and her eczema didn’t go away. We’ve tried removing everything we can and she still has the eczema. She’s happy, smart, outgoing, and no fogginess, just needs 12 or more hours of sleep.
Now I’ve found out that I have nodules on my thyroid (but thyroid is functioning properly after bloodwork) and have decided to go gluten and sugar free (starting last week). Of course, I immediately started feeling awful. I’ve had light headedness (almost dizzy/vertigo), puffy swollen right eye (with drying skin and redness/itchiness), and some headaches.
I just have a few questions: what do you think of gluten free oats? what do you think of raw milk usage? do you think the sugars in raw veggies juicing is okay to consume?
I’m so glad I found your site. I’ve been referred to an endocrinologist, so hoping that nothing further shows up (no cancer). Thanks for all your encouragement to everyone.
Along with getting her off of all grains (including soy, corn, GF oats, etc.) also get her off of all dairy and eggs. Go like this for awhile and see what happens.
You might want to supplement her with Lugol’s iodine along with colloidal minerals, multivitamin, etc.
Thank you for your kind comments and sorry to hear you’re having a tough time. Talk to your GP if your symptoms continue, and certainly get yourself some of the enzymes to help yourself through.
The grain free has to be absolute in some cases – toiletries, packaging etc, however I would always do dairy with grains in a skin case as I have rarely found any eczema sufferer in years of clinical practice who doesn’t have a dairy problem.
GF oats, to my mind, there is no such thing. This just means no contamination with gliadin from wheat etc. Raw milk is still dairy if she is sensitive. Some people feel Ok on it and it is far superior if you are still having dairy because the pasteurisation hasn’t killed off the enzymes etc. But it’s still designed for a calf, not humans, and full of hormones designed to make the calf grow! Sugars: sugar is sugar wherever it comes form inc fruit, albeit a better source. I always advise combining fruit juice with fibre, best to eat the whole fruit which comes with its own offsetting fibre.
Hope that helps, good luck.
Micki,
My wife and I watched a vid of a fellow talking about the Paleo diet. He said humans are the only species that drinks another species’ milk. We looked at each other and went “ewwww.” It was funny, but hearing it put that way really made the concept seem nasty and unnatural, which I guess it is.
Ha. That could have been me! That’s exactly how I say it to patients all the time. I say we do give it to cats but most turn their noses up at it!
Isn’t it funny how when we go against nature things go wrong. Also interesting that dogs can have the same problems that we do with grains. Put them on an all meat food and their dermatitis and other issues clear right up. They are not designed to eat grain products any more than we are. Though I don’t know a lot about cats, I have a theory. I think that the reason many kittens are sweet and lovable, but as they get older they get all weirded out and freaky is because they are fed things that are not natural for them. One gal posted online that after she started feeding her cat raw poultry, it started acting much more calm and no longer stalked and hunted the birds outside. Seems they really need that raw bird in their diet to be on an even keel.
We have some vegan neighbors who feed their cat a vegan diet. That is the most weirded out, spaced out cat I’ve ever run across.
Oh, that’s just plain wrong: cats are carnivores!
Come to think of it, those vegan neighbors are some of the most weirded out, spaced out cats I’ve ever seen.
Seriously, they are doing the high carb, Dr. McDougall thing. In this time with candida so prevalent and coccidioidomycosis, that I have mentioned to you before, also so prevalent in this region, the high carb thing is a recipe for disaster. And I think it ruins the brain as this gal does – http://www.redicecreations.com/radio/2012/06/RIR-120610.php
Thanks, Micki for all of your helpful posts! I was recently diagnosed with Celiacs and began my adventure of a GF lifestyle. It seems as thought the “easy” party (in comparison) is to give up the food containing gluten/grains but the difficult part is the withdrawal. I thought I was going crazy until I read this post! I have been feeling worse than ever since changing my diet…head aches, extreme fatigue, stomach cramps, nausea…the list goes on. I keep telling myself it will get better…it will, right? Crossing my fingers!
Hi Gequale, and welcome to gluten free world! I’m glad the posts have helped you, but sorry to hear you’re struggling. Talk to your GP if your symptoms continue, and certainly get yourself some of the enzymes I mentioned above to help yourself through; it could well be the opiate reactions.
Also, make sure you are not consuming something hidden as that will be enough to make sure you feel more rubbish than before as your reactions become more acute when you have come off and then gone back onto gluten again. if it really doesn’t calm down, think about gluten whiplash and going grain free.
Good luck, let us know how you are doing.
hi there i was having stinging in muy intestines for a good few months taken no notice of it as it used to go away but the last 3 weeks it has hit me with a bang.. started with eating mcdonalds bang started getting pins and needles in hands and 3 weeks later still the same after i eat i feel like getting sick alot of the time and stinging, every single morning without fail i end up cranping and needing to pass… seems to be if i eat bread i get worse i only noticed it recently like my joints in my hands started gettign sore had all my bloods done all came back good vitamins levels great etc and celiac came back clear , went for lunch 2 days ago got salmon and there was pastry around it and some sause took off pastry and ate the salmon potatoes etc 15 mins later i felt like i was going to puke all the signs are there that its celiac i started a wheat free diet yesterday was the first time i tryed it and i was HUNGRY all the time due to it will u feel tired for the first week coming off it?? i am a grease junky i eat burgers chips kebabs all the time 🙁 any help needed thanks oh and how long for body to clear from wheat and do sinuses clear too? thanks
Hi Colin, sounds like you are gluten intolerant! Believe you will need to come off cow dairy products too, at least until your stomach heals, so for at least six months. My appetite fluctuated between never hungry to always starving. you have a tough journey ahead but it will be all worth it in the end! My pins and needles, numbness, brain fog, arthritic symptoms are so much better now. Don’t forget you may also need to cut out products containing barley and rye! Good luck!
Thanks for your support, there AJ. Agree, will be a shock to the system quite literally to come off a greasy chip diet and remove the gluten, but you will get there, Colin, and feel so much better eventually. Just eat very often, every 2-3 hours at least; your body is needing nourishment to get it through these first few changes I would imagine.
Hi AJ, I do t know if you will ever read this due to you posting your response in 2014 and it’s now 2015. I’ve been on a Gluten free Diet for 2 months now. And 2 weeks ago I came down with these flu like symptoms but what’s scaring me is the Pins and Needles and Numbess. And still body aches. After 2 weeks. I don’t know if this is just I’m having Glutenwithdrawals or I’m coming down with Neuropathy. (Which I hope not the case) this is scaring me a lot. I’m 31 and never experienced these symptoms before.
Hi Tiff, well done for taking that step then. It sounds to me like there still might be some hidden going in, which you can become more sensitive to once most is out of your diet. Or it could be a cross-reactive food maybe. Neuropathy isn’t normally a common withdrawal symptom in my experience. See your doctors, of course, if it continues. But check your toiletries, meds and supplements etc for hidden ingestion.
Diagnosed Celiac last week and cold turkey quit gluten, corn, soy, dairy, many RX’s (including several benzos) and caffeine. First few days I had the typical caffeine withdrawal headache. Now I feel as though I’m living in reverse, experiencing the various health issues I encountered over the many years leading up to last week, one by one. Insomnia and tinnitus is maddening during the withdrawal. I’ve been tripling my probiotic consumption as directed and my supplements arrive next week. Hoping that helps take the edge off a bit. Hot water with a lemon slice and some honey helps with the detox and is soothing to the gut. Determined to get through this and back to health and well being.
Diagnosis leading up to Celiac diagnosis (spanning 40 years…searching for the answer):
Migraines
ADD
Gallbladder issues
GERD
IBS
Gastroparesis
PMDD
Chronic sinusitis
Hypothyroidism
Peripheral Neuropathy
Secondary Hyperparathyroidism
VIT D deficiency
Auto-immune (idiopathic)
Chronic Fatigue
Osteoarthritis
Mood disorder
Sleep apnea
Depression
Anxiety
Well done for making that huge leap. Careful just stopping meds like that though, you should talk to your doctors! That is bound to cause some withdrawal problems.
The reversal is interesting. In naturopathic medicine, we were always told to watch out for a reversal of symptoms. Sometimes people will reverse back through time and that is a really good sign of healing.
My view, given that list of health issues, is to make sure you are off all grains and legumes – follow the Barrier diet if you can. And use the barrier protocol which is designed to support you – look too at the enzymes on the Gluten Illness page which can help with the morphine-like withdrawal.
Good luck, let us know how you get on. I hope it all calms down for you soon. Be interesting to see where you reverse too: that is sometimes the trigger point when it all went wrong for someone!
I’m starting GF today, I found out I have a severe gluten intolerance. I’m lost as to where to start. Any advice?
Hi Christie, well done for identifying it then and starting to do something about it :). There is a ton of info on this site for you. Look at the gluten treatment page for your options of where to start – traditional GF, grain free, barrier plan. Also, look at the Gluten Resources page. Get a cuppa and sit down and read through the site – it will pay dividends in the end, promise. Good luck and let us know how you’re doing here or on the TGF facebook group.
How did you find out? I found out over a year ago now and am now just about to start reintroducing things after being pretty strict on the barrier plan which is very exciting! Never grains though. Where to start? Here basically. This is the best resource you will find out there. Massive amount of community help and Micki is a genius and pretty hands on with help as you see from her swift reply below. This site and soon the facebook group (when I get my act together) have helped and will continue to help me with this annoying affliction. Good luck and any questions I’d head either here or the facebook group 🙂
Ah, bless you for that Debbie :). Ooh, reintroduction, exciting!
Has anyone experienced GERD symptoms when giving up ?
I was desperate like so many others for answers to why I was always feeling sick ( living of sick tablets ) tummy discomfort / fatigue / chronic IBS / anxiety /brain fog / weakness / manic depression / suicidal thoughts / and my mental state ( scitzophrenia ) to be way out of control.
Out of desperation I cut nearly everything out except rice / potatoes / salad / meat / veg / and just started to dispise food to the point of almost giving up eating.
I used to cry when eating or fearful to because of not knowing what would happen.
I had no choice but to get help so I did York testing diagnosed me through an allergy blood test
Which was positive I found out I can’t eat Wheat / Yeast / Gluten / Buckwheat.
It has been 3 days in to my new way of eating and in all honesty I can say I so far have felt my skin is itchy, I have acid reflux , irritability. But my bowels movements feels better even though I still get little bits of IBS cramps.
I was not a big fan of eating wheat or dairy in the first place before I was diagnosed so I had Cut down nearly eliminating wheat for Rice which Im fine with.
But I had a shock when I realised all the hidden culprits in other stuff I was eating I had no idea I had not really cut out the culprits and so have just done so.
I choose not to go back to dairy as I feel better of it but I insist you Watch it with (alpro) rice milk it has hidden gluten in it .. I switched to Almond milk and I am more than happy with it.
You’ve made a good start then, well done Kitty. See how it goes for the next couple of weeks – people often get weird symptoms when they first give up. Think: is it something new or more of you are eating, is something hidden still going in etc. Hope it goes well!
Keep at it! It gets a lot easier. 2 years later and I am still learning what I can and cannot eat but the stress and frustration is gone. I remember the first few months feeling like I was mourning the loss of wheat, physically and mentally. Then all of a sudden I felt like a new person, no more stomach cramps, fatigue was gone and I felt so much healthier. Good luck!
How fab, thanks for that helpful and reassuring share 🙂
Hello, I am on week two of gluten and wheat free. I was feeling better in my mind for a few days and got excited I had found the cure for my acid reflux and feeling how I can only describe as being poisoned hours after eating bread etc. Then I started getting the acid but even worse than I had it before, no matter what I eat. Which is salad veg fruit and some meat and fish at the moment. Do you think it could be dairy that I need to cut out on too? I eat Greek yoghurt for breakfast with fruit because I don’t know what else to eat, I have milk in tea and eat eggs and cheese with my salads. I felt so down this morning I cried for about two hours, I don’t know what’s wrong with me. Today I felt a bit weak and shaky and tired so I’m. Going to bed to relax. Are these normal symptoms when not eating wheat and gluten any more?
Hi Sam, well done for making the change then. It is indeed quite normal to feel a bit ‘knocked about’ after a few days off an allergen; it’s almost like the body starts to do some detox or repair work sometimes. The withdrawal would certainly explain things like flu-like symptoms, brain fog etc. That said, the most common reason for a continuing symptom is either some hidden going in or indeed a cross-reaction to gluten and you are right to suspect dairy. Remember, though, that eggs are not dairy! Try coming off both for 10 days or so and see how you go. Be kind to yourself, hydrate properly and eat often to keep blood sugar up. Good luck, and try the TGF Breakfasts ebook to help with brekkie ideas, people usually find breakfast the most difficult to think of something as we are so entrenched in cereal and dairy choices – there are some lovely ideas in there to inspire you! https://purehealthshop.ecwid.com/#!/TrulyGlutenFree-grain-&-dairy-free-Stuff/c/12778036. Also join the TGF FB group for support, some lovely people on there 🙂 https://www.facebook.com/groups/Trulyglutenfree/
Reblogged this on Write Dorne – Putting life into words. and commented:
Thanks to Micki Rose for this post and blog.
I have gone gluten free and am in my first week of the withdrawal symptoms. Feel rubbish at the moment, but hope to feel better and lose some of my big bottom!
I’ll be back to bore you with the details and explain my reasons for giving up gluten… when I can stay awake long enough.
Thanks for reading.
Dorne x
Ha ha, good luck Dorne, it will pass, it will pass, promise 🙂
I know and I keep thinking about how great I will feel then… hopefully. Thanks for your words of encouragement ad wisdom. x
It does get so much better! I found solice in this blog about 4 years ago when I first went through the process. 4 years of a strict gf diet has changed my life, for the better! You’ll get through it! Cheers from
Washington DC!
Well that’s nice to know, Gabrielle! Fabulous 🙂
Good luck!
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Yes, all my posts are active. Well I’m still here, if that’s what you mean 😉