I'm wondering about gluten. I was tested for sensitivity to it and the test was negative. My doctor suggested trying gluten free anyway (along with dairy, eggs and nightshades along with many other foods) just to see. I will say that I had a digestive improvement from not eating gluten, however it did nothing for my brain power or my fatigue. After a month of no difference, I decided the sacrifice was not paying off and started eating it. Again, there was no difference in my thinking or energy level, but I did experience some mild gastric symptoms upon reintroduction. Same thing with eggs, but no other foods seemed to affect me. My fatigue continues and I'm desperate to regain a normal life. I'll be 50 soon and feel my good years are being wasted. Changes of medications make temporary improvements, but nothing lasts for long. Armour helped for a while. Salt baths helped for a while. Vitamin D helped for a while. None of the other supplements that my doctor recommended made any difference. I'm thinking about trying gluten free again for a more sustained period just to see, but I so don't want to. I enjoy bread. I enjoy cookies. I enjoy sandwiches. I wondered if anyone had any thoughts. Has anyone tried going gluten free and found there was no improvement for a sustained amount of time only to see improvement later?
gluten: I'm wondering about gluten. I was tested... - Thyroid UK
gluten
I didn't see much improvement but I was gf for a year. I'd give it more like six months, after which, if you decide it's inconclusive, you will be more aware of any changes when you eat gluten again.
I baked a lot so it was an adjustment but the biggest improvement was finding which products worked for me. I had no luck w gf flour in pastry so I improvised an almond flour version which was much better. I found a ready-made bread I liked (I never had any luck baking gf bread) and made a lot of gf pancakes to use as flatbread (sorghum, buckwheat and quinoa flours give quickbreads good texture). I found a good gf beer (never got on w cider). That's the kind of thing that will make you feel like you're still living a full life. And of course if you generally eat something like a meat and two veg diet it just won't be an issue. In the end I mostly didn't think about it.
Obv if you have coeliac disease and accidentally eating tiny amounts of gluten is not only bad for you but makes you ill, the issues will be different. I don't mean to downplay the coeliac experience. For me maintaining a gf diet was sometimes inconvenient, but fairly painless because it was a choice and an experiment in trying to feel better.
I know I can't drink beer. I can make do with wine. But giving up pasta and bread is a serious sacrifice. I gather you have reverted to eating wheat because the improvement was not enough to warrant the sacrifice?
Not really, I didn't feel like I was making much of a sacrifice. I don't eat much pasta and when I do I find the gf versions are good, and I am fine with Genius bread (the only thing I really didn't get on with making myself).
It was more about the inconvenience of making sure that gf food was available. It started to seem silly since I hadn't seen an improvement (my antibodies didn't improve and I didn't feel any different). And if at times I needed food and could only get a sandwich for example (motorway services kind of situation) it would then seem silly to go back to eating gf.
I also had a big issue with my in-laws never providing any food to eat when we stayed with them, so I had to bring my own rolls or whatever to have for breakfast. I kept up the ruse even after I'd stopped eating gf because I knew if I wasn't consistent it would become even more of a problem with them if/when I needed to do it again, but after a period of time it was ridiculous having to make sure I had my own food.
I felt like it was important to do it properly and completely, and once I had done it for a year and didn't find it helpful it seemed silly to do it in an on-and-off way. Sorry, that was a lot of words to explain. 
Beer has gluten from the malt whereas wine doesn't. Usually reactions start differently for people. You may be also suffering from candida hence your added reaction to the yeast in beer.
Try getting off all gluten (all grains) and do not substitute with what has been labelled gluten free products for all the high glycemic ingredients. Note that gluten is also hidden in many of the processed foods such as sauces and canned products.
Go for natural ingredients that yo can identify yourself, cook them from scratch. Can be hard to start with for some but with some organisation and planning you'll be fine and begin to feel all sort of benefits.
I think I do have some issues with candida as yeast infections have always been a problem. But I find this minor in comparison to the issues with fatigue. I repeat though, I experienced no improvement with fatigue with a very strict diet for 30 days. I already cook for myself and rarely eat processed food so I am confident that I was gluten free for the whole time. I didn't eat soy sauce or salad dressing - nothing I thought might have wheat products. I was faithful to the diet yet experienced no improvement with my symptoms - fatigue that is. I did notice improved digestion. But that improvement did not seem worth the sacrifice of many of my favorite, and seemingly healthful, foods.
Candida cause fatigue. They also feed on your iron and leave you depleted. If I were you, I would stay away from all sugars to include wheat. For every molecule of sugar creates 10 folds of candida.
Perhaps you're right...but that's not what I want to hear! I will say though, that my elimination diet did not allow sugars - no improvement.
You don't have to be coeliac to benefit from a gluten free diet. I'm not sensitive to gluten, but I am sensitive to wheat and oats so gluten free is useful.
Many people are sensitive to wheat.
And I think I am sensitive to wheat. But it doesn't seem to affect my energy level. Oats not so much, but corn is also a gastric symptom producing food. But again, it's my energy level that I'm concerned with. A month of wheat, oats and corn free eating didn't change that problem. Hence my reluctance to deal with a gluten free diet that seems to bring immediate relief to many people. It didn't for me. But I wondered if anyone, after persisting for longer periods did eventually reach better results even though initial results were not encouraging.
You may find it helpful to see a nutritionist who can advise on food intolerances and check your levels of vitamins and minerals. Deficiencies can creep up on us however good our diet seems to be.
Their professional body is BANT and from their website you can find a nutritionist near you. Website is bant.org.uk/
I work with a functional med doctor who is very conscious of my vitamin and mineral levels. I think that is taken care of. Her advice about wheat has gone unheeded and it's one of things I could still try. Actually I did try it once as I said, but I've heard that a month may not be sufficient. I'm waiting to hear one of those success stories to motivate me. Something like, I went wheat free and didn't notice any improvement at all until I was four months in...something like that.
Do you know if your antibodies were affected by the change in diet? That's what I was looking at for evidence that it was a positive change.
Well that is an interesting question. I'm afraid I tried gluten free early on before I understood about the antibodies well. I don't know the answer to that question as we didn't do a before and after comparison test. My antibodies have been coming down despite continuing to eat gluten which my functional med doctor attributes to low dose Naltrexone. I'm not sure if that trend will continue, but rising antibody levels would motivate me to try with gluten free again. Is that why you didn't continue to be gluten free? Was it not helping bring down your antibody levels?
Yes, my antibody levels were unaffected, and because I also didn't feel any other differences it seemed fairly conclusive that it wasn't making any difference to me.
I've been wheat-free - in this country, I eat it abroad - for several years and, apart from one symptom which I won't go into here (!) I don't feel that different. However, having recently read "Wheat Belly" I'm now wondering if it's the cause of my thryoid problems as apparently it can attack all our organs. The book explains why wheat's so bad, so I won't touch it here, but in France where they've not messed with it, I do enjoy it!
I did read parts of Wheat Belly. I think he has a point about the breeding of wheat. It's possible. I didn't agree with everything he said. I can't give examples, but as a farmer's daughter, I remember thinking at points that he wasn't very well informed about agriculture. You know, once an author shows some ignorance, it's difficult to take the rest of his work seriously. But I don't disagree that he may have hit upon some likely reasons why we don't digest wheat well.
Hi Lucy
May I follow you? Like you I'm trying gluten free, hoping to relieve the fatigue and brain fog, but have not noticed any difference, but have noticed some people say we have to be totally free for 6 months.
Bye fornow
I'm sorry...follow? I'm not very techie...I'm interested in your journey if that's what you mean. I need some input from fellow travelers. I have heard that idea that a longer time is necessary. It just feels like such a sacrifice. Some of my favorite foods have wheat in them!
Hi Lucy
I'm not technie either but think it just means that when you post I get an alert and can see replies to your posts as well as your post. Could be wrong, no doubt someone will put me right.
Lucy, you say Armour helped for a while and then didn't. Could that have been because you needed an increase? Nothing is going to work if you Don't take enough of it for long enough. How much were you on? And for how long?
Armour made me feel great for two months. In the third month I seemed to lose ground. My doctor was reluctant to increase my dose much. I was taking 30 mg. She increased it to 37.5 (half of a 15). I had enough medication to play with the dose a little myself, but decided that taking more didn't make me feel better. Then I received my order of Thyroid-S so decided I would switch for a while to see if that was an improvement. Sadly, it seems to be like taking nothing at all. I'm not sure if I need to take a lot more Thyroid-S than I was taking or if it just doesn't work for me.
I should say before that I was on levothyroxine 50 mg up from a start of 25 mg gradually increased over the course of a year. The first week on levothyroxine I felt great but it slipped away quickly. Vitamin D helped for about a month and again I slipped back. My doctor wanted me to try Cymbalta next. Limited improvement and disrupted sleep. Finally I got her to let me try Armour and I was so hoping that it would work. It seemed promising so imagine my disappointment that I seem to be back at square one.
Well, it seems to me that you've just never taken enough of anything. 50 mcg is a starter dose. 37.5 of Armour is laughable. But, you could be right, NDT may not be for you. Have you tried T3 only? But you would more than likely have to self-treat for that.
But, there is no such thing as a Wonder pill. It's replacing what you're lacking that makes you better. Maybe you didn't take enough vit D3 to optimise it. Or, maybe that wasn't the only thing that was wrong. Did you try taking magnesium and zinc with it? How's your B12? If that's not high enough, that can make you feel really ill. You need a lot of B12, optimal is 1000.
It's all trial and error with thyroid, plus taking enough of things and taking them for long enough to work.
I think what I find puzzling is feeling fine, followed by not feeling well at all. 25mg of levo was enough for a short time. I tried Tirosinct for a while. Again, felt great for a short time. Armour also made me feel well for a slightly longer amount of time. I am taking zinc and B12. My levels have been improving. Vit D also although those levels have been more stubbornly lowish. I don't know how to tell if NDT is right for me...I suppose not having good results is some indication...but on the other hand I had the longest, best response on Armour. It just faded away like the other treatments. What might I say to my doctor to sell her on letting me try T3 only? And why would I do that, besides the fact that I have failed to get good results on T4 and T4/T3 treatments?
Well, it's difficult to answer that because I have absolutely no idea how much you were taking and for how long. But, the protocol is this :
a) you start on a dose - usually 50, 25 is too low unless you are a little old lady with heart disease - and stay on it for 6 weeks so that it has time to be absorbed, then converted into T3, and the T3 absorbed. The starter does may or may not make you feel better, depending on just how hypo you are and how long you've been hypo. But, it might actually make you feel worse in the beginning.
b) so, after 6 weeks, you get tested, and 9.5 times out of 10 your dose will need increasing by 25 mcg. Now, this higher dose should make you feel a bit better. At first. The body says 'oh, great! more hormone!!! I feel fine!' But, slowly it realises that whilst it's great, it still isn't enough. So, after six weeks, when maximum absorbing and converting has been done, you should have another test and another increase of 25 mcg in dose.
c) you carry on like that, testing, increasing, waiting, testing, etc until all your symptoms are gone.
Now, that is how it goes in a perfect world. In our world, doctors are terrified of a suppressed TSH and stop increasing when the TSH gets somewhere in the range - but as the ranges are so rediculously wide, you might still be quite ill at that point. They rarely give enough to make you well.
Also, there can be the added complication of not being able to convert very well. That happens quite often to us hypos, for various reasons. But, you won't know if you're converting unless you have enough T4 in you to convert, and then get FT4 and FT3 tested together. But doctors Don't understand the necessity of testing FT3.
The reason you felt best on Armour was probably because of the T3 content - which could indicate that either one - or both - of these conditions weren't met. Which happens all the time.
The only way to know if NDT suits you is to try enough of it for long enough. But, there are basically two reasons why it might not suit you. a) you con't convert any T4 to T3, either synthetic or natural. b) you have Hashi's and other substances in the pill provoke a Hashi's attack.
As to convincing your doctor to put you on T3 only, I very much doubt that that is going to happen in the UK. T3 is too expensive, and doctors Don't understand T3 - and some even think it's dangerous! You more than likely would have to self-treat for that, buying your own T3 on-line, like so many of us do.
OK, so you're taking vit D, zinc and vit B12. But Don't forget that these things work in teams. The Bs all work together, so no point in just taking one or two, you need to take a B complex with B12. Vit D works with lots of things, zinc is one of them. Try adding in a little magnesium. How's your iron? What about vit C? There are so many, many things to think about. It is not just a case of taking a daily little white pill as doctors think. Not in all cases, anyway.
I've been thinking over your response. On one hand, it is kind of you to take the trouble at all. On the other, I am unsure on what basis you make your assertions. For example that 25mg is suitable only for little old ladies with heart problems. I felt good on 25 mg for a short time. What are your sources of information that lead you to this conclusion? I am not by any means of the mindset that doctors know everything. But my doctor does have training. If I'm going off my own way, I need something more solid than an opinion. I don't know what "long enough" on Armour means. Three months seems like enough time to have a conclusion to me. I went from great, to good, to just okay over those three months. A higher dose in the third month didn't make me feel good again. Just kind of off. I suppose we could try a T4 and T3 synthetic combo. I was on some T3 for a while but it didn't seem to help. But perhaps a higher dose of T3 than I was on. It was only 5mg. I'm always tested for T3 and T4 in addition to TSH. And yes I take iron with vit C and other B vitamins. I'm a Yank, not a Brit and our doctors are just as reluctant to try things outside the conventional wisdom - I have a mother and sister who do just fine on T4 so I guess I can't blame them entirely - but my doctor will definitely permit me to try whatever I want I think now that we have exhausted all of her suggestions. She let me try Armour after all. If you have thoughts I'm interested to hear them. If you feel you've said all you have to say, that's okay too. I am frustrated and any tone in my message is because of that. I appreciate any input.
I base my 'assertions' on the fact that the usual starting dose - the one that suits most people - is 50. If you were a little old lady with heart disease, 50 might be a bit much for you, and it would be better to start on 25.
On the other hand, if you were an 18 yr old weight-lifter, 50 might not be enough. 75 or 100 might be better.
It's not my opinion, that's the way things are usually done because it's best for the patient. I wasn't suggesting you were a little old lady with heart disease - I am, but that's another story. But, nothing wrong with being a little old lady!
The trouble with starting too low is that it can make you a lot worse before it makes you better. It all dépends how much gland function you have left.
Imagine, just for argument, that your gland is still capable of producint 50 mcg T4. You start taking 25. The poor old gland, which is absolutely exhausted, says Yes! She's taking hormone! I can have a well-earned rest! And, it stops making any hormone at all. So, in that case, the 25 would not mean that you had more hormone, it means that you, in fact, suffer a reduction in hormone of 25 mcg.
And that is not my opinion, that is fact. That does happen. We see it here all the time. It obviously isn't the same for everyone, but it can happen.
OK, so you were on NDT for three months - I Don't think you mentioned that anywhere, did you? That's not terribly long, in thyroid time. But if you feel it's not for you, then you know your body best. It's not for everyone. NDT made me very ill right from the start.
Your doctor may be 'trained', but unless he's a thyroid specialist, I doubt he knows very much about it. Very few of them do! And that's not just my opinion, either, it's my experience. They spend very little time on it in med school.
I refer you back to my questions about vitamins and minerals, to which you didn't reply.
I guess I was asking what science you base your assertions on. What is the basis for your statements. A book? Other people in this community? What patients have you observed? Yes, I see a functional med doctor and an endocrinologist. But so far no luck with hitting the right formula. Yes, I said I take iron with vit C and various B vits. Selenium, zinc, licorice, LDN, fish oil. It's hard to keep track of everything I take! Cortisol levels are a little high. So apparently I'm not suffering from adrenal insufficiency. Perhaps a bit of stress...
Yes, I know what you were asking. But I can't give you a very satisfactory answer. And, I thought you might be interested in the explanation of how it works.
It's something I read in so many places that I can't remember where. On here, definately. Those that have been on here for a long time will tell you the same thing. Maybe if you ask them they will be able to provide a more cogent reply. Shaws, Clutter, HumanBean, Marz, Helvella...
When you've been researching for as long as I have, you read so many books, articles, studies, etc, that it's difficult to keep track of exactly where you read what - especially with a hypo brain!
Cortisol often goes high before it goes low. But I can't remember where I read that, either.
I too have tested negative to gluten sensitivity, in blood and colon biopsy and allergy too. I too was told to give up Milk products, but tested negative to them also, except swiss and cottage cheese!! Really odd. I gave up gluten multiple times and no improvements..months at a time and nothing. I gave up all dairy for nearly 2 years, except casein, in my coffee creamer, tested negative to that, i am no better off than i was before. Mostly. Stopping the milk products did help my reflux, but it flares up again and again anyway. My body pain and fatigue have gotten steadily worse. I didn't give up nightshades, tested negative anyway. I am seeing a functional med. doc, to heal my leaky gut.
I remember seeing some advice about what to do if giving up wheat doesn't help in The Root Cause of Hashimoto's Thyroiditis...that's approximately the title...but I don't remember what she said. It makes me think that it's not so unusual to not see results from giving up wheat. It doesn't help me decide whether I should give it another go or not...but you might look into that to see what advice she had to offer since you seem to have the willpower to give wheat up. I'm wondering what other advice your functional med doctor had for you to heal your leaky gut?
Going gf is a major change and is very exacting. It has helped me immensely even though it took a long while to see results, and I am far from feeling perfect.
It's not unusual to not see results from going gf if it isn't done properly.
Going gf is not just about switching out bread brands. It also means eliminating cross contamination, which can be expensive as it means new dedicated equipment like toasters, knife blocks, cast iron pans, cutting boards, etc.
It also means avoiding foods processed in shared facilities/on shared equipment. This means I must only buy certain (expensive) brands of nuts, seeds, other grains, etc and must be wary of processed foods in general.
It means practically no restaurants, no food cooked in friends' non-gf kitchens, and always planning ahead.
It means gf household and personal care products.
It means testing for other problems like lactose intolerance and bacterial overgrowth.
Gluten can cause damage to the digestive tract that takes a long time to heal. Once it's been determined a person needs a gf diet, it may take 6 months at least to heal. If they still have symptoms at that point, there is a process of elimination to look at to rule out inadvertent gluten exposure, other food sensitivities, etc.
While gf hasn't fixed everything, I do know that when I've been glutened my thyroid becomes very inflamed and painful and I have psychiatric changes and mood disturbances.
Celiac testing is tricky and often requires some interpretation. Doctors may overlook things which lead to false negatives.
Two good sources I like are The Patient Celiac blog and the website and book of The Celiac Center at Beth Israel Deaconess in Boston. Both have some very nuanced information on celiac testing and a true gf diet. They do not have an agenda like Wheat Belly does and provide solid documentation.
Hope this helps!
I am confident that I eliminated gluten completely for that month. I ate only at home and eliminated almost everything except rice, rice milk and fruits and vegetables. No nightshades. No nuts. No dairy. No oats, corn, rye or barley. No eggs. I reacted to corn, wheat and eggs on reintroduction. Gastric symptoms. No change in brain power or fatigue. I'll look at the blogs to see if I find anything helpful but I just don't think that gluten is the solution to my problems. Or I would have felt something after a month. Something!
Gluten isn't a problem for everyone, it's true. But it sounds like you did react to wheat on reintroduction?
My diet change took several months to feel improvement. The gastro and brain fog didn't improve at the same rate.
I hope you find what's bothering you!
Yes, you are correct. I did react. But the energy level was really what I was trying to fix and losing the wheat didn't help with that. I will eventually work up the will to try again. I think I'm hearing as many people say - it didn't help as people who think - yes, it worked for me but I do conclude I can only know for myself by doing it.
Gastrointestinal problems can be a surprising energy drain- first the immediate pain and turmoil wipes you out, then in the long term you can develop deficiencies. These can take more than a month to address.
Every little bit of improvement helps.
If you are wondering about celiac, perhaps the genetic test would help? It can't diagnose the disease, but it can tell you whether you have the potential to have the disease.
The annotations on my genetic test results said that if a person lacks the celiac genes, their chance of developing the disease is virtually 0. My doctor takes this with a grain of salt, but still.
My feeling is that my symptoms would be much more severe if celiac were a possibility. I feel poked and prodded enough without more testing. The most important test is how I respond after all. When I can work up the resolve, I will try again. No major holiday on the horizon, no particular work stress. Eventually it will happen.
Yes, thank you for your comments. I am wondering what "a long time" was for you. Even so, I would imagine that someone so affected by a relapse felt an immediate improvement, if not a resolution of symptoms. And what is a bacterial overgrowth? How can that be determined?
Hi Lucy....problem is our bodies seem to adjust to whatever we try to heal it with. I started a digestive enzyme 2 years ago. I was told at lecture that it would save the body energy. As i was exhausted, i decided to try. I got the one that digested dairy, gluten. It worked for a year or so, and then decided not to work. So, i started to alternate with a probiotic. A couple of months doing each alternately. I dont know if my energy is better, but at the least my intestines that seem to have stopped functioning , work with this treatment. I use to have terrible tummy bloat up into my rib cage. Not anymore.
Hope this helps. There are others out their with a lot of stuff to add and share. Hope one works for you.
Thank you Natura. That is my experience exactly, that a remedy helps for a period of time and then stops helping. It is so frustrating. As for gluten, I suppose the improvement was not enough to make feel it was worth it. Yes my digestion was better, but that improvement was minor compared to the pain of living without my favorite foods. I will stop whining soon and just give it another try to see if it improves my antibody levels but just a little more whining first please.
I went gluten free for a few years on my Drs advice. I didn't notice much difference at all. Then I ate a hot cross bun and my stomach felt horrible. I assumed it was the gluten. I also have other autoimmune conditions and kept looking for answers. Then I read about giving up nightshades (potatoes, tomatoes, capsicum, chillis, eggplant, paprika etc) and it has really helped. I am back on gluten but the nightshade free diet is difficult. Paprika ( as a spice or food colouring 160c) or Potato starch are in almost everything that is processed. I make green banana ( plantain) fries and have found many recipe and spice ideas on the web. My 12 year old daughter checks every ingredient before eating anything from the supermarket as she feels the difference it is making for her.
I also had trouble with my armour working well ( including many increases) but I started to take it at bedtime and it changed everything for me. I sleep better and feel so much better. My Dr thinks I had an absorption problem. I am waiting to see if it improves with the nightshade free diet.
I know we all react to different things and it could be one of a number of things but this seems to be my answer. The hot cross bun included 'spices' which almost inevitably means paprika - it wasn't the gluten at all.
That is very interesting. My elimination diet included nightshades so I don't think leaving them out will make a difference for me. But I have just lately started to have a lot more joint pain so not sure if I should have another try at being nightshade free. These diet changes are very difficult for me. I can live with cooking and eating more healthfully, but avoiding some of my favorite vegetables is hard. I usually have a bedtime milk drink so I can't take armour at bedtime, but after someone on this forum suggested it, I have started setting my alarm for 3 am to give the armour a chance to be absorbed before I get up and want to take calcium. I haven't decided if it's helping or not. Has armour been the best fit for you after trying other options, or did you begin with armour?
Gluten free helped my bg control but that was about it, it also helped some of my stomach issues but did not eliminate them. I do wish I had gone gluten free before I had diabetes come out fully because I think it may have affected that longterm on some level. At this point there are so many foods I can't eat due to bg control, including most of the gluten free foods. I don't eat grains at all really now. I just wish I could go back to the days when I could eat like a normal person and not be in constant distress and feel like I'm starving etc.
You have my sympathy - very frustrating. I can't help thinking you are second guessing yourself though. There is no guarantee that cutting out gluten would have stopped the course of your illness. I understand the desire to have a simple life and eat like others do. But just not in the cards sometimes.
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