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…?
Micki Rose is a natural health consultant and writer specialising in allergy and intolerance. She has used knowledge gained as a sufferer herself and 20+ years in clinical practice to create this specialist gluten site.
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, and you can get both 1 and 2 reports free in Resources as a member?