gluten revisited

A couple of weeks back I asked if anyone had tried going gluten free and found that improvement only came after some months of being GF. I heard from one person who said that being GF hadn't helped, but generally people just advised being more persistent before giving up. No one said YES, going GF took time but eventually, after six months or so it paid off for me. I'm just giving it one more try. Has anyone found that it took several months before progress was noted, or did it help immediately as I have more often read people comment? Because I did it for a month, found it very difficult and felt no different for it. Would prefer not to go that route again, but know I need to find something that helps with my fatigue.

55 Replies

  • Lucy100, it depends what you want to achieve from g-f. If it's reduction in antibodies you may need to try it for up to a year to see improvement. If it's improvement in digestion and energy 3 months would be a fair trial. Some people experience rapid improvement within a week or two, but some may feel worse at first, possibly experiencing 'withdrawal' symptoms. Some don't notice any obvious improvement when they're g-f but may notice a worsening of digestive issues and drop in energy when they reintroduce g-f. It may help if you keep a food and symptoms diary to note improvements. If there are none it may not be worth you persisting.


    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Yes thank you. I just really wish someone would respond with an actual life experience of improvement after persistence. But I suppose if I want to know I just have to do it. sigh

  • Lucy100, you might find the answer you are looking for if you type "gluten-free" into the HU Search box and trawl through the posts. The best way to find out is undoubtedly to try for yourself.

  • Hi Lucy1000. I am a coeliac so have been gluten free for more than 6 years. I was diagnosed with hashimoto's in August with a TSH of 89.66 and tpo ab >3000 Being gluten free has done absolutely nothing for me as far as the thyroid. Being on levothyroxine has reduced my TSH to 1.52 but my antibodies remain just as high. Some people to see a benefit but I personally haven't x

  • Thank you for your reply. I guess the only thing a person can do is try things to see what happens. Everyone is different!

  • Oh, Criss-cross, you might try low dose Naltrexone. It seems to be bringing my antibodies down a bit. It's the fatigue I wish I could conquer.

  • I will look into that thank you x

  • I went gluten free for six months before I realised I had thyroid issues. Looking back, it may have helped. My brain fog went, but it's hard to be sure. When I then ate a wheat biscuit though after all that time I immediately blew up to a six month pregnancy, and rye had the same effect. So I knew then that it was definitely causing problems.

    I think a month is too short a time to be sure.

  • It felt like forever. But I do think I have to gird my loins for a longer trial to be sure of my reaction. But I don't want to...

  • my daughter only needs to be gluten free for 1 week, to stop her symptoms, after eating it. Again, i am 4 months no gluten, all tests negative for it and it makes no difference. I had food sensitivity testing and colon biopsy's.

  • are you planning on continuing to go GF then? It doesn't help you?

  • probably not for much longer, no difference in anything. All symptoms still flare up like before. You need to look at all food issues, thru testing. I tested bad for oats, black walnuts and swiss and cottage cheese, gluten negative! Then, you have to look for leaky gut and intestinal bacteria, good and bad.

  • It would be interesting to know what your antibody levels did in the time you have been gluten free.

  • i am still gluten free, easier, because my son tested positive, daughter too. My antibodies have been in the 80-'-90's in 2014, when gluten free and when not, but my leaky gut isn't healed, i feel no better, i tested negative for all gluten so it really doesn't matter. Going GF, doesn't help, if it is only part of the problem, but you would know it. My daughter gets really bad, when she eats it. My mom had celiac' me, you know it!! Been gluten free multiple times.. about 4 months each time.

    I would recommend signing up for isabella wentz emails..she got rid of her hashis and tells you step by step how to heal your immune system and what tests you need.

  • I went paleo 6 months ago and never looked back. It is the best thing ever. I completed the program and I have just continued with that way of eating. Don't go gluten free go grain free. Some people need to do the autoimmune paleo diet to feel better but it's worth it if that's what it takes to stop your body attacking itself. It is hard to change lifetime habits but I'd rather that than feeling lousy all the time.

  • I'm glad it's working for you. I wish I felt motivated to do without bread. I can't really imagine a life without it.

  • I hated feeling awful and not sleeping well and I want to be well for my family 😊My family are more important than food. When I see people eating bread etc I feel very sad because it really isn't great for our bodies.

  • I agree that you have found solutions that work for you. I'm happy for you. I'm not sure it's true that 'bread is bad' but we can agree to disagree. I can believe that you've discovered it's bad for you so I'm pleased you have found some answers.

  • Do you have autoimmune hypothyroid? Because if that's the case it could be that you have a leaky gut.

  • I do have Hashimoto's thyroid. I think something like 90% of thyroid patients do. I have heard about leaky gut which is my only reason for wanting to try going GF again. I am frankly skeptical, but the proof is in the response.

  • The gluten free Genius seed bread isn't bad at all. Bit expensive. The pitta breads are great and the wraps. Poppadoms remain possible. It is a big deal though, I agree. Worth ruling out, though, and if you have ruled out celiac there is no other way, according to Dr Fasano, to establish gluten sensitivity except by an exclusion trial.

    Probably you'll find you don't need it. I was already pretty sure I had problems from gluten - I already couldn't drink beer or eat fish and chips because of the bloating.

  • Yeah I definitely can't drink beer. I don't even try anymore. But bread is a different matter - much harder to give up. I'll get there eventually. Finding alternatives is part of success.

  • You don't have to do without bread. Granted, the GF versions will never be as nice but it's just one of those things :-( Thyroid wise I can't say I feel any different but in terms of digestion/constipation I am a different woman! I would never, ever go back to the dark side, even if a miracle occurred and I no longer had thyroid probs.

  • Glad to see your post and interested in replies, I've been wonder is it gluten, sugar or dairy to stop first ? 🙈

  • Why not try all three together and put them back one at a time to find out which is the culprit? I found it was no more difficult to give up a lot of things than it was to just give up gluten. My doctor gave me a list of foods I could eat and recipes to cook. A total disruption of my life, but an experiment that gave me some information. So now I know wheat and eggs are the culprits for me I just don't know if I can live without them. :)

  • Oh heck, I was worried someone might suggest that😰

    I visited a kinesiologist who said I was mild dairy intolerant, to stop milk, and hard cheeses, but I noticed no difference.

    I'd been take soya milk, then I read in here, I should avoid soya. I use spinach in place of lettuce, I then read I shouldn't have that. I kinda don't know what I should do, so I was back to ⬜️1 😢

  • Well I feel your frustration. I know of a person who eliminated countless things from her diet only to be told by the professionals she was dealing with that now she was sensitive to those things she had continued to eat - perhaps from overexposure. There is some value in taking out a bunch of things and noting your response as you reintroduce though. That way you don't feel like you're giving them up forever. Just an experiment.

  • I need to make a plan, and choose a day 🤔

  • I am currently gluten free and find that if I go near gluten I get a very sore tummy and head but as far as feeling better without it I don't feel a vast improvement BUT going dairy free helped my asthma significantly . Many of the commercial gluten free products are highly processed and it may be that you are reacting to something else. I have many many food intolerances and diet is a nightmare (you can imagine how hard this diet is, I react to salicylates and histamines and colours and preservatives and gluten and dairy!). I hope finally being treated for low thyroid will eventually help with it all. Some people say a week is long enough to know but I think with gluten it needs to be nearer to 6 weeks and you have to be very careful about ALL gluten such as crumbs of bread in the toaster and using spoons that have been dipped in gluten containing cooking and other cross contamination and trace amounts to do the test properly. Good luck

  • Thanks for your thoughts. I believe I was completely gluten free and processed food free too as I ate only at home for the month I was gluten free and cooked everything I ate. I ate only chicken, fish, rice and vegetables and fruit for that month. No nuts, no corn or soy, no nightshades, no dairy or eggs. It was a very strict diet. No alcohol, caffeine or sugar either. I only reacted to wheat and eggs on reintroduction but those were only gastric symptoms. I sympathize with the number of compounds that affect you. It is difficult to avoid all the things that modern society suggests we should be able to deal with.

  • So you did react to wheat.... "only gastric symptoms"... hmmm - kinda suggests it's a gluten sensitivity problem, doesn't it? Did you try rye or barley?

    So if you did react to wheat, you might see improvements in other areas if you went off the stuff for six months. With the autistic children who improve of g free and dairy free, I was told you could immediately see the improvement if the problem was dairy. Gluten took much longer to show effects.

  • It does suggest sensitivity. I don't typically eat rye or barley. I did notice that whole wheat bread gave me a stronger response than white bread for whatever that is worth. I think it's worth the experiment of trying. It's just that I dread it.

  • Lucy, I just have to say how much I admire you for sticking to that restricted diet for the month.

    I'm still with the gluten free (you'll remember I asked if I could follow you because I'm exploring this too) and find that for me it is much, much easier if I avoid the substitute foods, the gluten-frees, they seem to trigger my appetite for nice things like cucumber sandwiches and toast. Avoiding anything bready-y and anything like rice/quinoa etc I find I just lose interest in them and now I enjoy the other foods much, much more and would choose them if given the choice which is quite remarkable because I have thought bread and butter the best thing for as long as I can remember!

    Years ago I read a book which said that those foods we most like are usually the very ones our bodies do not tolerate, of course, so much is theorising and then there's the placebo effect but I thought it interesting.

    I find that what I look forward to and enjoy now is a simple salad with plenty of greenery and a tasty good-quality oil and vinegar dressing, that's become delicious.

    Like you though, I don't notice any consistent difference in my health and so am going to try for longer to give it a real test.

    You've obviously got the sticking power, let's hope you get good results.

  • That's kind of you. It's easier for me as well to avoid substitute foods and eat other things. Gluten free pasta has improved but it's still not as good as wheat pasta I think. In cold weather it's especially difficult to avoid the kinds of foods I crave. I have heard that food cravings are a sign of sensitivity. I don't know if I believe it, but it's certainly possible. I enjoy quinoa and rice but it's interesting that you don't even care for them once you're going on a pretty much starchless diet. I think I'm about ready to try again. It wouldn't be as hard this time if I'm not cutting out nuts, nightshades and dairy. I just need to clear the house of food I shouldn't eat and I prefer to eat it rather than toss it.

  • Hi Lucy

    It will be much easier for you than before, including nuts nightshades and dairy, that exclusion must have been really difficult so if you could do that you can do this.

    We are very similar, it was the cold that drove me to those warming foods, but I'm okay if I have a few nuts now and then and I'm drinking caffeine-free tea (redbush) with pure rice milk to warm up.

    Drifting awake this morning a thought occurred to me and it's what spurs me on. My understanding, from people like Greygoose, is that for some of us some foods don't have an immediate effect on the digestion, the skin or similar but they do interfere with our hormones, which means that improvement will be very gradual and there will be no immediate signs of worsening when we re-introduce the foods, but a gradual worsening. So I'm going to try to go for three months and see how I am at the end of three months and if better I think I'll just avoid the glutens (+ all the other blooming foods my body reacts to!).

    Nice chatting with you.

  • Likewise :)

  • Lucy, have you had your free T3 tested? All my results were fine (in my optimum range) for TSH and free T4, and yet it turned out that my free T3 was very low in range. I have been taking, and gradually increasing the amount of, T3 over the last six months and have just got to the stage where I don't feel constantly shattered. It might be worth investigating.

    I am also gluten-free, tried it for antibodies but it didn't work. However, along the way I discovered that I had a wheat allergy so now eat a gf diet to avoid the kind of all-over itching that makes me want to flay myself alive. (Antihistamines of no use.)

  • My endo is concerned about my T3 levels being on Armour, but so far they stick in the middle of the range. I have been thinking I should ask her if we could try more T3 beyond what Armour supplies because I have a suspicion that my improvement on Armour was due to its T3. She is very anxious about this Armour experiment and I'm not sure how much more experimentation I can get her to try. Is T3 available somewhere without a script?

  • No soda Powerade and water 3 to one Less salt soy free more sun and more sun and walking walking I hope this helps God bless

  • Are you suggesting these things are remedies that eliminate the need to going gluten free? Gosh, Powerade, I don't know if I can get that past my nose...

  • Some people initially at least, are in denial about needing to be gluten-free, simply because for some, it's so difficult. Once a person reaches the acceptance stage about being sensitive/allergic/intolerant/full-blown coeliac sufferer, call it what you will, then it becomes easier to stick to it, even if at first you don't feel the benefits

    For many, it takes time for the body to show the difference that's being made. For me the first noticeable change was in my stools. They were better formed (sorry to be so graphic), then I noticed I was generally less mucous-y and with less mucous secretion, my hearing improved because my sinuses and ears were no longer blocked with it. Alongside that, I was less bloated and gassy and slowly, ounce by ounce, my weight began to stabilise

    There is no use in putting a time-frame to it because we all react differently. We have different life-styles, jobs, sleep differently and at different times and crucially, our diets are different. Also, some people have other underlying health issues. So while one person might notice a difference in a week, as my daughter did, some take much, much longer. For me it was about eight months and now, the moment I eat bread or pasta, my tummy swells to uncomfortable proportions. And this is how many people know for sure that they ought to avoid gluten because the test is when you re-introduce it. This is because for some of us the changes in well-being are so gradual and incremental, we hardly notice then in time, even start to take the good changes for granted: the weight gain/loss, flatter tummies, less wind, fewer tummy cramps, better skin, shinier hair and a general feeling of well-being and vitality. Then one day, as I did, I thought to hell with this, I'm fine, I want french bread and cheese and so I had it and was extremely unwell

    The longer one is free from gluten, the more dramatic the reaction when it is re-introduced. For example, if you've been gluten-free for only a few days let's say and then go on a gluten binge, you're hardly likely to notice any reaction because your body isn't yet "clean". The analogy is drug addiction: when a person starts taking heroin for instance, they need very little to feel the effect, then in time, they need a higher dosage to gain the same high and gradually, the body becomes more and more tolerant. When at last the addict cleans up and then has a relapse and injects the same amount as heroin as he/she did when they were a full-blown addict, they often die because the "clean" body can't cope with the massive dose

    Goodness me, what a grim start to a heavenly Monday morning but I hope this helps in your understanding. My advice is: accept that gluten is doing you no favours, resolve to ditch it and employ whatever methods you need to enable you to stay free from it. Easier said than done and you may have relapses on the way but eventually, you'll probably kick the habit

    Good luck

  • Where I am it is cold and snowing fiercely so you are right in keeping with my general mood. You may be right. I am in denial. I accept that I should give it another try to know if it affects my antibody levels. It is very difficult for me and I am not sure if I totally accept that gluten is bad. I know it's bad for some people, but if it really were bad, it would be bad for everyone. But right you are - I react to it and there is no way to know if giving it up does anything good for me besides improve my digestion without trying to go gluten free again. Right after I finish the boxes of pasta in the cupboard and finish the lovely loaf of Italian bread I bought on the weekend...

  • The other thing to remember is that gf will always be there. If now is not the time maybe wait until you are in a better position to try it. Most of us get a tremendous amount of comfort from beloved foods and I believe that comfort is good for you too! Maybe being gentle with yourself is what you need right now. :-)

    Being cautious and treating yourself well by eating nutritious food is one thing and of course if you feel unwell when you eat it, well that's your answer, but not eating things on principle is too close to disordered eating for me.

  • Thank you - that's kind. It is a lot of pressure on my mind to think about giving up things that make me happy.

  • Yes, the above is right, the permanently blocked sinuses improved. The poo stops floating and sinks to the bottom of the loo. (Lovely.. knew you wanted to know that.) I don't think there are "just" gastric symptoms, "unlike Las Vegas, what happens in the gut does not stay in the gut" there are whole body consequences.

    On "leaky gut", obviously there is a whole gang of health fraudsters out there misusing the phrase to get cash from the credulous. But it does exist: in celiac disease that is exactly what happens, the gut leaks. I' m not sure whether gluten sensitivity causes leaks. It causes inflammation, rather than being an auto immune attack like celiac.

    The bread is getting better, that's the thing.

  • I've been GF for about 6 months and although i don't think it's made much difference to my hashis (still struggling with fatigue and overall sense of crappiness), I have steadily lost weight, and no longer have awful bloating, wind and other digestive upsets after food.

    Interestingly, i went out for a meal a couple of weeks back and only chose items of the Bella Pasta GF menu. By the time I got home I had a rock-hard bloated belly and terrible wind, so I think whatever I ate was either contaminated or not GF. I know some people find going GF quite hard, but I haven't found it so bad. The only thing i miss is freshly baked bread. GF bread is dire by comparison!

  • That is very interesting. Maybe they mixed up the pastas in the kitchen. Your symptoms sound very much like mine although bloating is not really an issue for me. But overall digestive issues were much improved without wheat. I do find it a sacrifice though and I can deal with a little wind. I am wondering if you checked your antibody levels. That would make a difference to you I would think, if you knew it was helping those go down. Decreases your risk of other autoimmune issues surfacing I read.

  • I had steak! It could have been the garlic bread though - it tasted like gluten free flat bread, but who knows?

    With regard to antibodies, prior to Christmas I was feeling OK, but a combination of massively stressful events followed by a chest infection has left me feeling as if I've been run over by a bus. I have ordered a thyroid panel from Blue Horizon, to find out what the story is (doctor won't check anything other than TSH). I suspect my antibodies have flared up, but we'll see when i get the results back.

  • How curious. I suppose stress could affect antibody levels as well. I read that a stressful event can provoke thyroid autoimmune issues to begin. I lost a close friend in the month before my symptoms began so I can believe that's true.

  • Stress affects the adrenals, which is linked to thyroid, so I guess it's all related. My thyroid problems are almost certainly genetic - mum had Graves - but I think a combination of menopause and stupidly long work hours kick-started my woes. Fun fun!

  • I tried going gluten free and I felt OK for a few days and then I went downhill. Looking at some gf food ingredients there were soya flour and I was amazed that manufacturers making gf foods for people already poorly would use soya flour. But apart from that I don't think I need to go gluten free as I don't feel any different on it or off it. Just hope I don't ever need to. Such a restricting diet that keeps your smiles off your face at meal times!😩

  • I quite agree. If there is a strong need you do what you have to but it's not a good time. Soy can be very irritating. I avoid it but then that's not difficult. Thanks for your reply.

  • No just saying what helps

  • It took me 30 years to give up gluten because I was so addicted to bread! I knew it was causing problems but just couldn't face life without my bread and pasta! I am pretty sure I did myself permanent damage. I don't test positive for coeliac, but have all the symptoms of 'silent' coeliac disease and went GF on the advice of my gastroenterologist.

    My brain fog probably took 6 months to improve as much as it was going to. My digestion took even longer, but that was because it took me 3 years to admit that the horrid GF products were giving me heartburn! Nowadays I hardly touch them - the only time would be if a friend had gone out specially to find something GF for me. And a pack of GF bread sits in the freezer for months. I do eat rice cakes and corn cakes if I want a vehicle for pate. Cheese I eat with apple or celery.

  • So please tell me Ruthi, how severe were the symptoms that made your gastroenterologist advise giving up gluten? I am imagining that your symptoms were rather severe, not just a bit of looseness. Basic logic just suggests that mild symptoms indicate a minor problem, which is why I have been so resistant to going GF. Besides as you say, not wanting to face a life without bread and pasta.

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