Ok, I've been digesting information for awhile so I'll try to spit it out in a fashion that makes sense.
Last year, through this message forum, I finally woke up (sic) to the fact I felt terrible. My memory was lousy, I was tired all the time, cold, couldn't lose weight. I had Grave's Disease almost 20 years ago and had my thyroid treated with radioactive iodine (buh bye thyroid!). Since then I had been on 125 mcg of synthetic thyroid.
I don't know how long I had hypothyroid symptoms but I just knew I was having a hell of a hard time in my new job. My brain seemed to be functioning at about 50% of its usual speed and my memory was terrible.
So once I put 2 + 2 together and did my research helped by people here, I decided my thyroid meds weren't working correctly. I went to Healthcheckusa.com got a thyroid panel done and, sure enough, my Free T3 was below range.
So then I got put on a thyroid med that contains T3 (Armour thyroid). At first I felt great. Huge energy. But I deteriorated. I felt hyperthyroid yet hypothyroid at the same time. So I cut back the dose. Then I started feeling hypothyroid.
My next thought was I had an imbalance between T3 and T4, which blood tests seemed to show. So I asked my doctor to switch me back to mostly T4 with a little armour. I went back on 125 mcg and was taking .5-1 grain of armour. That worked a lot better. My energy felt more stable but without the hyperthyroid symptoms (quite as much).
Next thing that happened was I talked with Rachel on this message forum and she told her tail of getting Dx'd with gluten intolerance or Celiac disease. She mentioned that in her research she found that autoimmune diseases were linked to gluten intolerance, especially thyroid diseases. I've had a couple of AI diseases and I felt like I might be developing Fibromyalgia to boot. It just seemed like a lot of stuff was going wrong with me. Plus I have had IBS for years and years, probably not long after Graves disease was Dx'd.
So I started to investigate that and decided I would give the Gluten Free Diet a shot for a couple of weeks and see what happens. I figured I could give up anything for 2 weeks, it wouldn't kill me. I got the book "Dangerous Grains" and read up. Boy, they could have listed my name in there because I sure had a lot of the issues associated with gluten intolerance. One of the things that stuck was the doctor said he especially found it associated with blue-eyed blondes with prominent foreheads.
That was me! I've always had this big old forehead that I was self-conscious of when I was younger.
Well, by the second day my chronic near-diarrhea was cleared up and I found I had to back off the Armour more and more. Finally in December I was fully convinced I was gluten intolerant and really figured I didn't need any further testing to prove that. My own testing showed it pretty clearly. However... I wasn't 100% in the gut area. I was still having a little IBS, just not the crippling cramping kind I had before. And I was also curious whether testing would show what I already suspected. But there were issues... Blood tests don't work if you've been on a gluten free diet. Even as quickly as 2 days the
antibodies in your blood will disappear or at least not be detectable to a lab. And your intestines heal up pretty quickly too. So I looked to www.enterolab.com
for testing. He has a test that measures the antibodies to the gluten protein in your intestines, which is where the exposure happens. He says he can still detect them 6 months to a year after going gluten free (remember this, we'll come back to how long the antibodies last later). And his full panel does a genetic screen on the main gene responsible for Celiac or Gluten Intolerance. So I figured that I should do it to satisfy my curiousity and also to give a heads up to my brothers and sister about their possible risk.
The complete gluten intolerance testing was expensive, $350. Obviously the cheapest way to do it would be to just try a gluten free diet and see what happens. But my curiousity over came my reluctance to open my wallet.
I got the test results back just after Christmas and I've been delving deep into what it all means since then:
They tested a specific gene. Now we have two copies of each gene, one we get from Mom, the other from Dad. Sometimes they're exactly the same thing, in which case you have a higher likelyhood that the gene is active and your disease will be more serious.
In my case, I had two different genotypes. I had one which is the main gene for celiac disease and another geneotype that was specific to gluten intolerance with the symptoms of: neurological problems such as brain fog and fibromyalgia.
My genes are HLA-DQB1*0302, 0501. Putting them into Google and searching is definitely interesting!
How likely are you to have Gluten Intolerance (GI)? It is currently being found in about 1% of people's blood tests, so about 1 out of 100 people. However it shows up much more often in the stool tests, simply because a lot of people haven't gotten to the point where it is in the blood yet.
However just because it isn't in the blood doesn't mean it isn't impacting your health.
Enterolab also does antibody testing of a stool sample. Its a lot of technical stuff, but essentially it finds antibodies that are specific to gluten proteins as well as a less specific test. They also test for fecal fat which indicates that you have damage to your intestines such that you're not absorbing nutrients from food, a condition which marks the "end stage" of gluten intolerance, often called Celiac Disease. If you can only have one test done, I'd recommend the Stool Test for Tissue Transglutaminase, it is the most specific and costs $99.
Enterolab's testing is pretty novel. It finds gluten intolerance long before blood testing does, and long after a gluten free diet is adopted. It makes sense that antibodies to gluten are going to be present in the intestines long before the blood stream because that is where the gluten is! Once it has gotten to the blood stream you're much further along in the disease. Dr. Fine has a really good paper explaining his testing and why it is better. Early Diagnosis Of Gluten Sensitivity: Before the Villi are Gone
is a must read if you're considering any sort of testing.
If you decide to go to your doctor and get tested be sure to get IgG and IgA but more importantly get TTg and EMA tests as well. They're far more specific.
Don't necessarily accept the blood test results as definitive. It could just be you're not far enough along to have the antibodies in your bloodstream in quantity enough to be detected.
If you have children and you have gluten intolerance or the genes for it, you're probably going to pass them along to your children. It is a good idea to get them checked out too if you have it.
Gluten and Thyroid and Brain Fog, etc
So what is the connection between autoimmune and thyroid disorders? And could my brain fog be something other than low thyroid?
First of all, being gluten sensitive means your body is in hyper-immune state all the time. Its constantly sending out antibodies to what it perceives as a foreign, dangerous protein: Gluten. I don't know if it is known exactly how this leads to other autoimmune diseases but having your body in this state of believing it is under seige constantly seems to lead to other things. There's a large number of autoimmune diseases, neurological disorders and cancers that are connected to GI. The longer you are exposed, the more likely you'll suffer from these. In "Dangerous Grains" the author has had good luck reversing, or halting the progression, of a lot of autoimmune diseases like RA, MS and Lupus with a gluten free diet. Many autistic children are now being put on Gluten and Milk free diets and having good luck with their symptoms. Some people's seizures are much better on this diet as well.
What was once thought to be a Gastro Intestinal disease is now being recognized as one that affects the entire body, including the brain.
has many excellent studies on the matter.
But what does that have to do with you? A gluten free diet might halt the progression of your Hashimoto's or Grave's disease. There is a very high connection between autoimmune thyroid diseases and gluten intolerance. It might be that your brain fog and hypothyroid like symptoms are actually caused by gluten as there is a lot of research now about neurological issues and gluten.
Symptoms of Gluten Intolerance
This is a hard one because some people suffer no symptoms at all! Some people have gastro-intestinal issues, like IBS or more severe. Others will have something called "ataxia" which means basically, difficulty walking. Others will be plagued with autoimmune problems, psychological issues like depression or schizophrenia, mouth ulcers (aka canker sores), skin issues like eczema, psoriasis, osteoperosis... there's a list of 200+ possible symptoms and diseases that have been linked to this disorder.
Why it is serious
You might think if your symptoms are mild or it is undetectable in the blood that you don't need to rid your diet of every last bit of gluten. Think again! Remember what I said to remember earlier about how long those antibodies to gluten remain detectable... for months if not years! If you continue to re-expose yourself to gluten you have loaded yourself with antibodies for another 6 - 12 months. You aren't getting a chance to really heal.
So I just have to Stop Eating Bread?
If only it were that simple! Gluten is used in so many things, drugs, meats, sauces. It is also found in a lot of grains. I won't try to describe the diet because other people have already. It means you have to read labels compulsively. I recommend www.celiac.com
and going to their site index and reading up.
This describes safe and forbidden foods
. Oats is usually forbidden because there is cross contamination.
However there are a few oat manufacturers that make the claim they are safe because they take special precautions. For the most part though oats, rye, barley and wheat are out in addition to some of the less typical forms of wheat like spelt, triticale and so on.
I was also found to be casein intolerant from my testing at Enterolab. If you go gluten free and are still having bowel issues, it might be dairy products. I may also get tested for soy and egg as well at some point. Might as well!
I'm still not 100% confident I can drop the Armour yet. I'm due to get another blood test done to check my thyroid levels. Depending on how they are, I may stop the Armour and see how it goes. I have had a few days where I just didn't feel like I needed it, so I didn't take it. When I do take it I feel slightly hyper. And it is not really possible to split the pill down any smaller!
Why the change? I theorize that or all of the following happened:
1) Gluten was causing me to not to absorb my thyroid meds 100%. I might have had some damage in my small intestines.
2) Gluten caused me to not properly convert T4 into T3.
3) My hypothyroid issues were not really hypothyroid but neurological issues caused by gluten intolerance.
Reading on the message forum at celiac.com some of those people have so many neurological issues (i.e. brain fog) they have a hard time complying with the diet because their memories are so bad and they're not processing information well. It reminds me so much of how I felt before, only much, much worse than I was.
Anyway, I feel this is important information for people suffering from autoimmune thyroid diseases or who feel like their thyroid might be letting them down. It might not just be the thyroid. And the good news is, you don't need any help from your doctor in fixing this issue.
I just wanted to add this excellent resource to this post. It's the gluten sensitivity message forum at Braintalk. These are their links to studies implicating a myriad of diseases and conditions to gluten intolerance: Braintalk Gluten Sensitivity and Celiac Disease
. There's a lot here about neurological disorders.