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  #1   ^
Old Mon, Jan-02-06, 11:38
Nancy LC's Avatar
Nancy LC Nancy LC is offline
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Default Why those thyroid symptoms might be related to food.

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:

Gene Test

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.

Antibody Testing
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.

This thread 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!

Last Thoughts
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.

Last edited by Nancy LC : Tue, Jan-03-06 at 10:44.
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  #2   ^
Old Tue, Jan-03-06, 19:23
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dasanipure dasanipure is offline
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What an outstanding post, Nancy. You are truly a gift to this board. This clarified so many things I've been suspecting for a long time. Thanks.
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  #3   ^
Old Tue, Jan-03-06, 20:35
Nancy LC's Avatar
Nancy LC Nancy LC is offline
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Really, thank Sunshine24. She's the one who figured it all out and helped me find the path to my own issues with food intolerances.

In a lot of regards, finding out you're gluten sensitive is a lot like finding out you're slightly hypothyroid. Doctors are not clued into the wide variety of symptoms and they only catch this disease in its end stage. That's why I suggest not going to your doctor for testing, either test drive a strict gluten free diet yourself or else go to enterolab.com for diagnosis.
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Old Tue, Jan-03-06, 20:49
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nawchem nawchem is offline
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Nancy gotta thank you for the article too!

Have you found any correlation to gluten and rosacea? Rosacea hit northern europeans at a high rate.

I'm just wondering, having mvp gives you a 25% chance of having an autoimmune disorder and one article I read said 59% have thyroid problem. Did you see any research though that mvp could be related to gluten? I just think its strange that autoimmune disease is linked to a heart murmur.

When they say that some people develop resistance to their thyroid medication do you think that their just not absorbing it as well because of gluten?
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Old Tue, Jan-03-06, 21:07
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Nancy LC Nancy LC is offline
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I don't know about resistance to thyroid meds, it hasn't happened to me. I do know my gluten intolerance was definitely progressing. My symptoms were getting worse.

I haven't run across a linkage between GI and rosacea and Dangerous Grains doesn't mention MVP, but there are several other heart conditions mentioned there and lots of skin disorders.

Dr. Fine is finding a large % of people who can't digest gluten properly. I think the sad truth is, we're just not yet well adapted to eating it. We've only been eating it a few thousand years and it is now the largest component of our diet.
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Old Wed, Jan-04-06, 16:08
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Default Dangers of Gluten Sensitivity

Nancy,

Thanks, from me too! That Braintalk Link is packed full of information.

Joanna
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Old Sat, Jan-07-06, 12:50
ChristineO ChristineO is offline
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WOW! I am a long suffering Graves pateint who is thinking of R-131 soon. I will give a gluten free approach a try. I need to do something. I was a LCer for a LONG time, but then even that didn't help with weightloss. So, i started counting cals and eating carbs again. No woeghtloss, but I didn't have bowle issues from the carbs. can one be gluten intollerant and not feel terrible?
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  #8   ^
Old Sat, Jan-07-06, 13:58
Nancy LC's Avatar
Nancy LC Nancy LC is offline
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Christine, the antibodies in your body can go anywhere! Some people have neurological symptoms from GI, others have intestinal symptoms. For me, I was autoimmune, IBS, aching joints and brain fog and tiredness.

I really recommend this web site for more info: http://brain.hastypastry.net/forums...read.php?t=2132
And this one: www.celiac.com

Be sure to read up on the safe and forbidden foods.

Right now I've just started the SCD (specific carbohydrate diet). I'm trying to get my intestinal issues completely resolved. I'm not having any grains at all. Its mostly just meat, some veggies, and eggs and nuts and fruits. I also found out I'm casein intolerant. So while the gluten seemed to cause my really bad intestinal cramping and diarrhea, the milk stuff was contributing somewhat to that. I also think corn might have been a problem too.

After my gut has a few months to heal up I'll try to add food back in.

If you want to know for sure, go to enterolab.com and get tested. His tests detect food intolerances long before blood tests do.

For me, my symptoms were fairly mild, mild enough I never went to to the doctor with them. Lots of gas, bloating (although I thought I just had a fat tummy), and then the nasty BM's.

I know people that have gotten MS, Lupus, RA and stuff from their GI have had a lot of relief of symptoms from their autoimmune symptoms once they got off the gluten.

One thing that takes a long time to soak in and family and strangers will never grasp this: Even a very tiny, miniscule amount of gluten will set you off. After you've been gluten free for awhile, its even worse.
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Old Sun, Jan-08-06, 14:40
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Nancy,

I'm finally reading your post

Wow! Awesome job of explaining everything. I think it was only a couple months ago that I told you about gluten and look at you now...you're an expert on every aspect of the disease.

Christine, you dont have to feel bad to be gluten intolerant. Many people with biopsy proven full blown celiac disease are completely asymptomatic. They feel no ill effects from gluten consumption. This doesnt mean they can eat gluten though...the damage that has occurred will eventually wear the body down.

Virtually ANY autoimmune disease can result from a gluten intolerance although thyroid, diabetes and athritis are the most common. Untreated celiac disease frequently results in cancer. The fact that 1 in 133 have Celiac Disease and only 1 in 4,000 are AWARE that they have it is pretty scary.
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Old Sun, Jan-08-06, 14:54
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Quote:
Originally Posted by nawchem
When they say that some people develop resistance to their thyroid medication do you think that their just not absorbing it as well because of gluten?


This is pretty much what happened to me. I was feeling like my meds weren't working at all....I had every symptom of being Hypo except I was losing lots of weight. As soon as I went gluten free my body temp went up...I was getting out of bed in the morning and I had lots of energy. My skin and hair got better and the aches and pains went away. Also depression and brainfog which were 2 of my biggest symptoms were suddenly gone. I had been adjusting my meds for more than 2 years with no change. I tried T4/T3 combo and finally Armour but nothing worked. At the time that I started the diet I was on 3 grains of Armour my hands and feet were numb...I was freezing and sleeping all day (I was on disability). Immediately I was able to go down to only 1 grain and 5 months later I'm still taking 1 grain with no Hypo symptoms.

Unfortunately I had lost 25 lbs. before I figured out about gluten. I've gained 10 of it back but I still have a ways to go as far as thats concerned. I ended up at 94 lbs. Now I'm 105 but my goal is 120. Maybe by the end of the year.
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Old Sun, Jan-08-06, 15:17
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Nancy LC Nancy LC is offline
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Dr. Fine is finding a LOT of people with gluten intolerance. I believe he said 60%. But I don't think those are random samples, I think they're people with symptoms or relations with symptoms. I just get a feeling a lot of the people coming here with thyroid symptoms might really have gluten intolerance which is causing their issues.

Also, for me, I was a fat gluten intolerant person. They don't all lose weight, some of us gain weight. In fact, I think I was glutened the other day and my weight bounced up 2 pounds and I got dairrhea.

I've been reading over at glutenfreeforum.com how some celiacs are overweight and actually lost weight when they went GF.

I'm trying an elimination diet now to see if I can get everything figured out. It is higher carb than I've had in years, but I'm hoping I won't gain weight on it. So far, holding pretty steady.

Quote:
Wow! Awesome job of explaining everything.

Thank you! You were so crucial to me for figuring it all out. The book Dangerous Grains and Enterolab. Wow! And my brain is functioning so much better now that I'm off the gluten. I'm not stupid any longer! Horray! Ok, well... not AS stupid. Really, it made me feel like thinking was hard.

Last edited by Nancy LC : Sun, Jan-08-06 at 15:25.
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Old Sun, Jan-08-06, 15:27
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Quote:
One of the things that stuck was the doctor said he especially found it associated with blue-eyed blondes with prominent foreheads.

OK, I have to look into this, my mom and sister are both on thyroid med.
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Old Tue, Feb-14-06, 08:53
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Nancy LC Nancy LC is offline
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Dr. Fine has this to say about autoimmune diseases and food intolerances:

Quote:
From http://www.finerhealth.com/Essay/ :
“Here’s the first set of data that we found showing the superior sensitivity of stool testing versus blood tests for antigliadin IgA antibodies. In untreated celiac disease patients, we found a 100% positivity in the stool versus only 76% in blood. In hundreds of microscopic colitis patients since tested, only 9% have antigliadin antibody in blood but 76% have it in stool. And the same is true of 79% of family members of patients with celiac disease; 77% of patients with any autoimmune disease; 57% of people with irritable bowel syndrome-like abdominal symptoms; and 50% of people with chronic diarrhea of unknown origin, all of whom have only about a 10-12% positivity rate for blood tests (like normal volunteers). Thus, when you go to the source of production of these antibodies for testing, the intestine, the percentage of any population at a higher than normal genetic and/or clinical risk of gluten sensitivity showing a positive antigliadin stool test is 5 to 7.5 times higher than would be detected using blood tests. In normal people without specific symptoms or syndromes, the stool test is just under 3 times more likely to be positive than blood (29% vs. 11%, respectively). That’s a lot more people reacting to gluten than 1 in 150 who have celiac disease. 29% of the normal population of this country, almost all of whom eat gluten, showing an intestinal immunologic reaction to the most immune-stimulating of dietary proteins really is not so high or far fetched a percentage, especially in light of the facts that 11% of them display this reaction in blood, and 42% carry the HLA-DQ2 or DQ8 celiac genes.”
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Old Tue, Feb-14-06, 10:24
Nancy LC's Avatar
Nancy LC Nancy LC is offline
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Just wanted to update because my health keeps changing. My intestines got really bad around the first of 2006 even after I gave up diary products. It seems like this happens some times, when you get off the things you're intolerant to, you get worse for awhile. My brain fog and hypothyroid symptoms came back too. For awhile I was getting too hyper on any amount of Armour thyroid, but without any, I get hypo. Really was confusing! For now I'm backing off the T4 (synthroid) just a bit and making sure I get 1/2 grain of Armour every day. This seems to be helping.

I also started the SCD diet which seems to be working really well at healing my gut. The goal is to avoid eating anything that isn't digested by the human and might go feed the beasties lurking in the bowels. I've further restricted various other food groups that are connected with arthritis. Actually, I'm really following a Paleo type of diet, although it wasn't my original goal.

It seems to me like I have another autoimmune disorder going on. Possibly Lupus or Sjogren's. I'm seeing a rheumy to identify that and I am hoping that keeping down immune responses from food intolerances will hold that nonsense at bay.

I have noticed that if I eat something bad (get glutened or caseined) I immediately get a terrible feeling of brain-fog.
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Old Sat, Feb-18-06, 10:18
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SidC SidC is offline
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Quote:
Originally Posted by Nancy LC
It seems to me like I have another autoimmune disorder going on. Possibly Lupus or Sjogren's. I'm seeing a rheumy to identify that and I am hoping that keeping down immune responses from food intolerances will hold that nonsense at bay..
Nancy, why do you think you might have lupus? You've likely already found these sites, but in case not:
WrongDiagnosis.com and emedicine article on lupus. I did some reading about lupus after I had a positive ANA test a few years back, but apparently that test has a lot of false positives. Plus the symptoms were not a good fit - recurring rash, yes, but not on face or scalp, gastrointestinal issues, but no pain (well, they were a pain, but not the way that counts), etc.

There are so many closely related autoimmune diseases, all having the same general symptoms - it's enough to drive you nuts! I saw in some of your previous posts that you've had gene-testing done. Expensive, but you may be right that it's the only way to get a definitive diagnosis.
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