***This is the first in a series of posts looking at non-celiac gluten sensitivity and autoimmune disease. Stay tuned for more posts in this series in the coming days.***
I really wasn’t planning on writing a post on gluten-free today, but in the spirit of putting what’s on my mind out there, here I am, doing just that. I’ve been researching the gluten-free diet/lifestyle/eating plan for a few months. This would involve completely eliminating wheat, barley, rye, spelt, and everything made from them (pasta, bread, pie, cake, tortillas, and even some sauces) I was strongly considering it before Christmas, but it just seemed overwhelming, so I put that idea down for a while.
Now I’m coming back to it and finding that some of the details of what I learned have turned a little rusty in my brain, and there were some questions to which I never really found a satisfying answer. Plus, I thought that there might be some of you who are evaluating gluten-free for yourselves or just want to know what all the hype is about.
Believe me, I started from the point of view that, for a lot of people, it was probably just that: hype. I’m not referring to people with notable digestive problems when I say that–or even kids with autism or unexplained skin rashes and allergies. My attitude had much less to do with ever having thought, about someone else, “Oh, that person is making a big deal out of nothing” and a lot more to do with a) holding myself to a high standard of proof before saying I have a medical necessity for it, and b) wanting a reasonable assurance that if I go to all this trouble, it has a fair chance of actually helping me.
The things I’ve come across during my research have made me believe that there’s much more than “hype” to all the gluten-free buzz.
Why I Care
I was diagnosed with hypothyroidism at 15 and PCOS at 18 and have had many of the attendant symptoms. On paper, my thyroid numbers look good. I take my medicine, Armour thyroid, religiously, and it shows in terms of vastly improved lab numbers as compared to a few gap periods when I was not on medication in the past.
Sometimes when thyroid patients are not thriving on levothyroxine (Synthroid), they do better when they switch to Armour because it contains both T3 and T4. I was on Synthroid for the first five years after I was diagnosed, and it’s definitely true for me that I feel better on Armour.
Yet in terms of energy (especially), mood, cognition, other hormone levels, liver enzymes, and to some extent, cholesterol and blood sugar, all of which are medically established to be consequences of hypothyroidism, there is a general negative trend. It’s pretty clear that while the medicine may be controlling my thyroid numbers, it’s not mitigating the progression of any of thyroid disease’s other effects on my body–or at least not enough.
And I don’t accept that. I don’t accept that after you’ve taken your little pill, if it’s not doing everything that needs to be done, that’s it. I also don’t accept that the answer is to add more pills as more issues pop up.
Is Hypothyroidism a Big Deal?
Because I’ve been hypothyroid my entire adult life, I don’t exactly know what it’s like to feel “normal,” to have as much energy as other people do. Rather than mope about it, my strategy has frequently been to ignore it and have the same expectations from myself as for other people in terms of what I can accomplish, how much rest and sleep I need, what kind of exercise I can do, and (sometimes) what I can “get away with,” dietarily.
The fact is, though, that–without wallowing in it–I have a condition. No one tells diabetics to just buck up, “be normal,” and not worry about it because everyone recognizes they have a condition and it places some limitations on them. With hypothyroidism, it’s easier to be in denial about the gravity of my condition because the effects haven’t been as widely publicized as diabetes and because many of the effects develop slowly, like heart disease or cancer, and won’t reach a threshold of diagnosis until many years down the line.
But it’s sobering to realize that, in fact, diabetes is something that lies around the bend for a lot of hypothyroid people, as well as heart and liver disease. It starts out as a disease that affects your weight, energy, and cell respiration, when underneath all that, what it’s doing is affecting your vital organs and entire body.
PCOS is another autoimmune disease that may seem to affect one organ but is actually systemic. Ovarian problems are really just the tip of the iceberg.
Both conditions ought to be taken seriously.
A Possible Connection to Gluten?
Perhaps because I don’t accept that a pill or pills are all that can be done for me, I’ve always been open to other means of healing, particularly diet, exercise, and herbal medicine. My problem–which I fully admit–is that I’ve seldom been consistent enough to see an improvement, and that’s something I’m working on.
As I may have mentioned in the past, I’ve done other lifestyle diets. Pesco-vegetarian, food combining, vegan, and WAPF (loosely), to varying degrees of success in terms of weight loss and energy. I’m kind of burnt out on restrictions. However, about a year and a half ago I read an article by Chris Kresser discussing a possible connection between hypothyroidism and gluten intolerance–and, as I read on, I found out that it’s not only hypothyroidism but many other autoimmune conditions, another of which is PCOS. That was when I first began paying any attention to the gluten issue.
It may be hard for some people to understand why all the fuss. After all, while I do have a few pounds to lose, I’m only about 5-10 pounds over the weight I should be for my height. Some people comment that in years past, people couldn’t get fancy foods or afford to turn down any available food “and they did okay.” I get that, and I don’t want to be that fussy person, that “special case”–really, I don’t. But then again, there were a lot of modern illnesses people simply didn’t get very often then and also a lot of illnesses people just suffered through.
Even though it’s tempting to just hop on any bandwagon that would help me feel better, and even though I usually don’t require 10 peer-reviewed studies to try a (reasonable) alternative remedy, those who claim there’s a gluten-thyroid connection claim you have to go off it–down to the last molecule–for as much as 6 months to give it a fair shake. That’s a big undertaking and a lot to ask of your family. Eating out, parties, get-togethers, and even cooking at home would be difficult. Maybe that’s why I’ve invested more research in this than some other things I’ve tried. To ask others to go to that trouble for me, I want to make sure I really have a good reason. I also want to be fairly sure that this has a chance of improving my health.
So I began looking into it. Over the next few days, I’ll be sharing the information I’ve gathered and the questions I’ve tried to find answers to, like:
- Has it been medically established that non-celiac gluten sensitivity is a legitimate condition?
- Has it been proven that gluten can affect the thyroid and cause autoimmune diseases? If so, how?
- Has it been proven that a gluten-free diet can improve or eliminate autoimmune thyroid disease and other autoimmune conditions?
- How do you find out if you are celiac or gluten sensitive? What tests are considered valid?
- Can a person have celiac disease or gluten sensitivity if they don’t have digestive symptoms?
- If you are celiac or gluten sensitive, what can you do about it? Is it a feasible lifestyle?
I’ll give you a spoiler, though: based on the medical studies I’ve read, I am now convinced that non-celiac gluten sensitivity is a legitimate disease, and I believe there are plausible pathways by which it could create or have an effect on autoimmune diseases, specifically hypothyroidism. In addition, there are a lot of suspicious co-morbidities between celiac disease and almost every other autoimmune disease you can imagine. While correlation doesn’t prove causation, that’s an important part of the picture.
If I were a professional scientist, I would have to hold out for conclusive, overwhelming proof in order to make public recommendations. But I’m not. I’m me. My n equals 1, and the standard of proof is different. It has to be simply that there’s reasonable cause to believe a gluten-free diet will help my condition and won’t be detrimental in the process.
If you’ve considered going gluten-free for a particular health concern, especially an autoimmune disease, I hope that the information I’ll be posting over the next few days will help you better understand the issue, as it helps me to synthesize everything I’m learning.