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.

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.

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.

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.

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. 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.

Nope. And I have celiac disease. I've noticed no difference as far as the Hashimoto's goes.