Hashimoto's and Gluten

RedBec7
RedBec7 Posts: 42 Member
For those with Hashimoto's who have gone gluten-free: did it make a difference in your symptoms and the number of antibodies? How long did it take before you noticed a difference in your symptoms?
My newest doctor told me I should cut out gluten, among other things, because it might be triggering my immune system.

Replies

  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    I eat primal, which is gluten free. It's based off of Paleo, but allows dairy (especially the full fat version) if dairy agrees with you. I started off strict Paleo (no dairy) and then reintroduced dairy into my diet. I've had times where I stopped being primal and just watched calories and macros, but ate all the grains and gluten. For me, this is a BIG difference in how I feel (my husband also feels much better primal but he has no thyroid or other issues -- that we know of).

    I don't inspect everything to make sure it's gluten free, but I stay away from the major sources -- which are mostly grains. I also eat very little highly processed foods, so there is little likelihood that gluten is sneaking in there. If I want some cookies, crackers, etc., I look for Paleo/Primal recipes and make them myself. So, it's possible that there is a little gluten in my diet somewhere from other things, but if there is anything, it's very minimal as my diet consists mainly of meat, fruits and veggies, some full fat dairy, occasional chocolate or candy and things I make myself with gluten-free ingredients. I no longer eat bread, pasta, etc.

    For me, I noticed a difference within the first few days -- I just felt less lethargic and more clear-headed. I have more energy and don't feel tired after work. Before I was on thyroid meds, it was literally the only thing that helped me. As I said, I had times when I went back to eating with just paying attention to calories/macros, and there was a big difference for me in how I felt and weight loss. The calories/macros themselves just didn't produce weight loss in the same way for me -- but doing those same cals/macros primal does. I don't know if it's gluten, grains or something else (additive in highly processed foods?), but whatever it is, there is a big difference for me personally.
  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    edited April 2015
    The connection with gluten is that it is a common trigger for autoimmune diseases (though why they don't seem to know). Same with lactose and casein found and dairy and to a lesser extent lechtins (found in a lot of things, but highly so in legumes). Paleo avoids these. But Primal allows in the dairy if you don't notice a reaction (some do, some don't). Since Hashi's is an autoimmune disease, some doctors will suggest avoiding these foods as part of an elimination diet to see if you notice a difference -- in how you feel generally and in regard to hypo symptoms specifically.

    Here's info on Primal: http://www.marksdailyapple.com/primal-blueprint-101/#axzz3YiZZ46cY
  • RedBec7
    RedBec7 Posts: 42 Member
    Thanks for the replies.
    The doctor suggested an elimination diet that cut out gluten, soy, corn and dairy for 3 weeks and then we would add them back in and see how I reacted. When I went back for a scheduled visit after two weeks I felt the same - tired, achy, all the typical symptoms. She then said that I should cut out gluten and probably soy forever and cut out all processed foods and eat only organic fruits, veggies and meat (grass-fed). She said maybe I could add dairy and corn back in at some point. I was very overwhelmed at the sudden shift to the extreme diet since I hadn't finished the three week elimination diet yet but I've been following her advice.
    It's been just over 4 weeks since I started the elimination diet and 2 weeks since I cut out processed foods and started eating organic. I don't feel any different except I'm more hungry, moody and stressed out. I have lost weight but I think it's because I'm eating way less calories than I should be.
    I guess I'd just like to know how long I need to do this if it's not helping.
    Can anyone tell me how long it took to feel better?

  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    I think it really varies per the individual. I know some, like me, feel better pretty quickly. Others it literally can take months for the body to reduce the antibody inflammation.

    Are you taking thyroid meds? Because more than likely, there are multiple things going on. For me, in addition to the diet change, I also take thyroid meds (Nature-throid for me), DHEA, Vitamin D, metformin (for insulin resistance), magnesium and selenium in addition to a good multi-vitamin, omega-3s and probiotics.

    I know the diet is part of the equation because I switched off it for a while while still taking all the meds/supps and did feel a difference. But the diet alone before the meds/supps wasn't enough -- it did help, but I didn't get full symptoms alleviation symptoms until my doctor figured out all my issues.

    Many docs will just treat the thyroid, but there could be accessory issues as well. In addition to thyroid, my doc checked vitamin D, magnesium, iron, iodine, adrenals (DHEA, cortisol, etc.), liver enzyme (can't remember which ones), blood sugar (A1C and perhaps others) as a lot of hypo symptoms can be caused by or exacerbated by other issues -- like low vitamin D, low DHEA, etc. Some were fine like the iron, liver enzymes, etc. but others there were major issues -- like major deficiencies in vitamin D and DHEA and insulin resistance (which was shocking to me since I wasn't that overweight at the time). My doc told me that having a long untreated thyroid problem can throw other things off in the body -- that low vitamin D, low DHEA and insulin resistance were three of the most common things he found with Hashi's/hypo patients that went untreated for a long time.
  • RedBec7
    RedBec7 Posts: 42 Member
    I've been on Armour Thyroid for about 4 years. I also take vitamin D and a multi-vitamin. The doctor added probiotics and fish oil. I also take a calcium supplement so timing everything and remembering to take them all is a challenge.
    I've had lots of blood tests over the last 6 months and everything else is okay. My antibodies are high and my TSH is very low. My free t3 and t4 have been in the low to low-normal range.
    I do think my thyroid problems went undiagnosed for at least a decade so maybe it will take another decade to work things out.
    I think I'll try adding dairy back into my diet and see how I feel.
    Thanks.

  • WHPFORD
    WHPFORD Posts: 4 Member
    A friend of mine is Dietitian and she said to not go gluten free without first being tested for celiac disease. She said there are healthy things in grains containing gluten that you would nutritionally miss out on for no reason if you do not have celiac. She also noted there are no studies that connect gluetn to thyroid disorders; that the immune response for celiac is different. If you cut out gluten before getting tested then test later it will throw off the test accuracy and possibly give a false negative.

    In shorts, she said if you want to try gluten free then go for it, but do get tested for gluten intolerance first.
  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    WHPFORD wrote: »
    A friend of mine is Dietitian and she said to not go gluten free without first being tested for celiac disease. She said there are healthy things in grains containing gluten that you would nutritionally miss out on for no reason if you do not have celiac. She also noted there are no studies that connect gluetn to thyroid disorders; that the immune response for celiac is different. If you cut out gluten before getting tested then test later it will throw off the test accuracy and possibly give a false negative.

    In shorts, she said if you want to try gluten free then go for it, but do get tested for gluten intolerance first.

    No offense to your Dietitian friend, but I think she is woefully uneducated on (1) triggers for autoimmune diseases, (2) the difference between celiac and triggers for other autoimmune diseases and (3) necessity for grains.

    There is literally NOTHING essential in grains whatsoever. Are there healthy things in grains? Absolutely. But, you can get those healthy things from other sources. So eliminating grains does not deprive you of anything essential - you just need to get those things from other sources, whether it's trace vitamins and minerals, complex carbs or fiber.

    Can a person's autoimmune disease be triggered by gluten and they don't have celiac? Absolutely. Just because you don't have celiac doesn't mean gluten doesn't trigger another autoimmune disease. Celiac is a very specific sensitivity/allergy to gluten, one that is rather rare in and of itself. However, there is quite a bit out there that other autoimmune diseases are believed to be triggered by grains, and gluten is suspect no. 1 -- whether it's RA, IBD, lupus, etc. Is the research definitive? No. But it is persuasive to many in the medical profession and something that is often recommended by doctors treating patients with autoimmune diseases, including Hashi's. Will cutting out gluten help everyone with Hashi's? No, but it has helped quite a few people. Many tests for celiac result in false negatives and an elimination diet is free -- no cost for a test, which is probably one of the reasons so many docs who treat autoimmune issues recommend it.

    There is really no downside to cutting out gluten/grains to see if you notice a difference in your Hashi's (or other autoimmune disease). If you want any anecdotal evidence, go check out Mark's Daily Apple and read some of the success stories. If you ultimately don't notice a difference after a while (I've seen 6 months as the recommended time to give your body time to reduce down your antibodies), then you can add it back in -- if you have no reactivity, then you shouldn't notice a difference in the way you feel and your symptoms.


  • RedBec7
    RedBec7 Posts: 42 Member
    I have been tested for celiac among other things and it was negative.
    My doctor advised going gluten-free based on my high antibody levels. She thinks it could be triggering my immune system. She also said not to eat oats, even gluten-free, as they could do the same thing. But what about other grains, like rice and corn.
    She said I could add corn and dairy back into my diet after 4 weeks. I started eating dairy again last night. I'll wait a couple of weeks and try corn.
    But how can I tell if something is affecting me when I never felt any better when I wasn't eating it?
    Should I stay on the gluten-corn-soy-dairy-free, no processed, only organic diet for 6 months? Or just avoid gluten and soy?
    My doctor was full of rules about what not to eat but not very helpful on how to do this.
    It's a bit overwhelming and the stress is making me want to eat a pizza. ;)
  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    I know it's super frustrating. But, eliminating one thing at a time won't help if you're reacting to more than one thing. The only way that works is to eliminate everything and then slowly re-introduce things back one-by-one.

    When I was doing it, I did a full elimination diet for 6 months before I started adding things back in. My doc said that some people will start to notice differences in a few weeks, but some take several months and that's why he recommended a minimum of 6 months to be sure. I personally did a strict paleo diet for my elimination phase, but I think a lot of other other elimination diets out there -- whole 30, AIP, etc. -- are fairly similar in that they all restrict grains (including oat and corn), dairy and highly processed foods. I think AIP is even stricter eliminating nuts, eggs and some other things. That was too strict for me personally, but if I was still seeing no difference after 6 months, I may have tried that. I personally hadn't heard of soy, but if your doc is suggesting that, it's probably a good idea. I've never been much of a soy eater, so that likely didn't impact me personally.

    If after 6 months and you don't feel any better and your antibodies haven't improved, then maybe you don't have reactivity to any of those things. But, you won't really know until you try. We don't have any reliable tests right now to test for such things unless they're extreme like allergies or celiac. So, the only way to really know if you're reacting to something is to do the elimination diet approach for yourself. After 6 months and you notice some improvements (if that's the case), then you can start to add back in things one at a time. The rule of thumb I was told was one new thing per month.
  • RedBec7
    RedBec7 Posts: 42 Member
    Thanks Lindsey. I see my doctor again in a couple of weeks. I'll see what she says about adding things back in. She wasn't very clear about the process. And her saying to never eat gluten again doesn't seem like a very scientific way of figuring out if its a problem. My fear is that she's just being trendy. My trust of doctors has plummeted since dealing with Hashi's.

    I've read in a few places that soy could be an issue for people with thyroid problems. They didn't specify why and neither did my doctor, but I recently read that most soy is grown and manufactured alongside wheat and is usually contaminated with gluten.

    I thought that soy would be the easiest thing to eliminate as I thought I didn't eat much of it but soy (soy lecithin, soybean oil) is in so many things. Once you start to look for it in the ingredients - it's everywhere.

    Thanks again. Only 5 more months to go!
  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    edited April 2015
    Part of the problem, RedBec, is that they don't know a lot about why the body attacks its own tissues. At best, they often just focus on treatment regimes -- what the autoimmune disease reacts well to. Some autoimmune diseases start up or stop abruptly and doctors never really know why. That's one of the reasons Hashi's is so frustrating -- it was the first discovered autoimmune disease, but they really haven't learned much about why it happens. They just focus on treatment -- thyroid meds. There has been some research lately showing that supplementing with selenium seems to reduce the reaction. They don't necessarily know why, but it's the reason why many people with supplement with selenium as there is really no downside to it.

    So, there is a reason this has become trendy. People are starting to see differences in eliminating grains from their diet, and gluten is the no. 1 suspect (but it could be something else in grains too). Part of the belief in this is that grain products have changed a lot in the last 100 years with all the extra additives, preservatives, etc. -- it may really be one of those things rather than the grains themselves. People don't seem to really know definitively. But, research is continuing, and you see things about leaky gut and other autoimmune reactions.

    If diet is the keystone, there isn't a lot of motivation for pharmaceutical or other medical industry giants to do the research as there are no drugs or medical devices to invent and sell. It's also not a lifethreatening condition that affects a lot of people -- so not a huge human interest component. Not to mention, many of our food lobbies -- like wheat -- are really set against it as it could devastate their products and market share. In the end, there simply isn't a lot of motivation to see if this is truly the issue or not so the research is really in its infancy.

    I think a lot of docs recommend because there is really no harm in it and so little is known about why the body does this -- and they simply don't have many other option other than the thyroid meds and checking other levels. If it doesn't work for you, you're just out the time/effort in changing your diet. No other downside. But if it does work for you and helps alleviate symptoms from autoimmune disease -- as it has for many -- it can feel like a small miracle.

    The success stories on Mark's Daily Apple often talk about alleviating health conditions, most that seem to arise from autoimmune diseases -- IBS, psoraisis, RA, etc. I've never had such hard time as some of those people, but I can understand why it would feel like a small miracle to them and the stories are pretty mindblowing.
  • RedBec7
    RedBec7 Posts: 42 Member
    Thanks again Lindsey. I really appreciate you taking the time.

    I didn't really mean that going gluten-free is "trendy". Just that my doctor abandoning the elimination diet after two weeks and going to "never eat this again" felt a bit unscientific to me and made me question her a little. I'd like to know if gluten and these other things are an issue, not just never eat them again because she thinks they are evil or something.

    I've only had two appointments with her so far and both were emotional and overwhelming so we'll see how things go. If it helps in the end it will be worth it. But if I have to do this for 6 months and it doesn't help I may have to throat punch someone. :smiley:


  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    Yeah, I hear ya on the throat punching. I struggled with stuff for years and wanted to throat punch a LOT people, mostly my docs. When I finally found one that looked at more than TSH, looked at symptoms and then tested a bunch of other issues based on my symptoms (all the vitamin deficiences, adrenals, liver, blood sugar, etc.), it felt like a small miracle. And it made me want to throat punch my former doctors as none of them ever looked at any of these issues, and many of there were super obvious (like the antibodies, vitamins, adrenals, blood sugar).

    It is truly frustrating how poorly these issues are treated and managed by the medical community. If you're not someone that's lucky like editorgrrl who fell into the normal TSH route and responded well to that treatment, it feels like you're starting to go crazy. Or the docs don't take it seriously until it's really, really bad -- and that is just terrible. Man, I wish I'd found the doc I have now when I first suspected issues, 10+ years prior. All that frustration with weight changes, being so cold all the time, fatigued, etc. was completely unnecessary!!

    I hope the diet change helps you!
  • RedBec7
    RedBec7 Posts: 42 Member
    It's now been six months of gluten-free/soy-free living and...I really don't feel any different than I did before. I had a blood test last week but don't have the results yet. I'm curious to see if there is any improvement in my thyroid antibodies.
    My fingernails did seem to start growing longer after I started eating gluten-free. But my hair is still falling out, I'm still exhausted all the time, still have brain fog and poor memory. I had horrible joint pain for a couple of months which is better now but I'm still stiff and achy at times.
    We lowered my armour thyroid from 90 mg to alternating between 75 and 90 because I was feeling very stressed out and anxious a few months ago on 90.
    My weight is about the same. I lose and regain the same few pounds just like before. I can lose some weight if I eat less than 1000 calories a day but that's not very practical or sustainable.
    I'm not sure if I'll continue with the gluten-free diet. We'll see what my test results are and go from there.


  • Fuzzipeg
    Fuzzipeg Posts: 2,276 Member
    RedBec7. I'm sorry to read you've not found any benefits from the gluten/soy free change you made. This thyroid thing can be so very complicated and personal in spite of the "one size fits all" of common perception. I fear these complications arise because someone has been un-diagnosed/untreated for much longer than others. Also sometimes our problems are about more than our "simple/basic" thyroid function because something more is complicating things. Discovering our contributory causes of our personal health issues is time consuming and probably involves many dead end even if we find a good doctor/medic.

    I see you are unhappy the only way you can loose a little weight is going under 1000 calories and know it is the wrong way to live. Taking such a radical approach, restricting our calorie intake to less than 1000 is probably a several edged sword. Even taking vitamin and mineral supplements we can leave our bodies unintentionally nutritionally challenged. Then our body thinks we are living in hard times, each time we do this we disrupt our systems even more, we down regulate our metabolism further. Guidance to help us restore our metabolism our selves is hard to find. I'm sure many of us agree this is a tough place to be.

    I don't know if this will be of any interest to you or anyone. On Sunday Dr Nikolas Hedberg (drhedberg.com) will be giving a talk at 3 pm US Eastern time on what he refers to as "Thyroid Nation Radio". The talk is to cover, Thyroid metabolism, and gluten. He does not seem to think going gluten free is essential for everyone with thyroid issues. I doubt I will listen, I'm UK based. I may look out for a subsequent transcript to take from it what is of interest to me which will likely be different to others own chosen snippets. There are other doctors out there giving their own take on thyroid issues too. Please do your own research and satisfy yourself of anyone's scientific background.
  • RedBec7
    RedBec7 Posts: 42 Member
    Thanks Fuzzipeg. I'll check out Dr. Hedberg. It is disappointing that gluten-free doesn't appear to be the answer for me. Any answer would be welcome at this point. On the upside there are many foods that I will be happy to eat again.
  • NerdieMcChub
    NerdieMcChub Posts: 153 Member
    Nope. And I have celiac disease. I've noticed no difference as far as the Hashimoto's goes.
  • as5811
    as5811 Posts: 62 Member
    Thanks for your input, Fuzzipeg. I have Hashimoto's. My doctor wants me to lose weight and suggested a 1500 calorie diet. No mention of gluten free. I have limited my starches - mainly breads & pasta, but not totally eliminating gluten. This something new for me (going gluten free).
  • RedBec7
    RedBec7 Posts: 42 Member
    My blood test results after six months gluten-free and soy-free are pretty much what they were before the diet. My thyroid anti-bodies are still very high but not quite as high as before. My T4 is low normal, my TSH is very low. Right where they were before. Looks like I'll be eating gluten again.