Gluten Problems And Autoimmune Thyroiditis?

[Enigma33]

Hello all... I was diagnosed almost 2 months ago as hypothyroid (TSH was 15.4 with RR .4-4.0, FT4 .8). I recently had my thyroid antibodies tested (TPO) and they came back crazy high (869.7 on a RR of 0-9, no that is not a typo!). I am only 27 and have had hypothyroid related symptoms since at least age 17 (when they first tested my TSH).

Anyway, I have been doing a lot of reading lately and discovered that many of my intestinal symptoms are similar to Celiac's disease, along with MANY other symptoms that I have. Apparently autoimmune thyroid people have a higher risk for Celiac's.

I have tried to go gluten-free for a few days, and even on those few days I feel SO much better - no diarrhea, no bloating/gas, brain is much more "on top" of things, less muscle aches, and not as tired. On the days that I've "slipped" (having bread or pasta) I have felt worse the rest of the day, and the next day been in a complete brain fog and exhausted, and nauseous.

I asked my doc for a Celiac's test, and he did the TTG IGA w/reflex (Endomysial) blood work (just writing exactly what it says on the sheet!). My results came back at 9 on a RR of 0-19, which he says is normal and I do not have Celiac's.

I am wondering what to do from here? All of this thyroid stuff is so new to me, that I just don't have time to thoroughly research Celiac's as well. But I feel so much better when I don't eat bread or pasta, and almost have a visceral reaction even when thinking about eating those again.

Can anyone tell me more what these test results mean? Or where (if anywhere) I should go from here?

THANK YOU!!

[mommida]

You should have been eating gluten to have the test. We you eating gluten when you had the test done?

[Enigma33]

Yeah, I only had maybe 3 gluten free days prior to the test. Other than that, I've been eating gluten my whole life, typically bread in the morning for breakfast, some pasta at night.

[Bubba's Mom]

My blood tests came back in the normal range. An endoscope with biopsy showed severe Celiac Sprue. Blood tests can be wrong!

If you feel better without gluten..just treat yourself as if you had gotten a positive result. The treatment is the same. No gluten

I hope you feel better soon.

[beachbirdie]

  On 7/17/2011 at 6:48 PM, Enigma33 said:

Hello all... I was diagnosed almost 2 months ago as hypothyroid (TSH was 15.4 with RR .4-4.0, FT4 .8). I recently had my thyroid antibodies tested (TPO) and they came back crazy high (869.7 on a RR of 0-9, no that is not a typo!). I am only 27 and have had hypothyroid related symptoms since at least age 17 (when they first tested my TSH).

Anyway, I have been doing a lot of reading lately and discovered that many of my intestinal symptoms are similar to Celiac's disease, along with MANY other symptoms that I have. Apparently autoimmune thyroid people have a higher risk for Celiac's.

I am wondering what to do from here? All of this thyroid stuff is so new to me, that I just don't have time to thoroughly research Celiac's as well. But I feel so much better when I don't eat bread or pasta, and almost have a visceral reaction even when thinking about eating those again.

Can anyone tell me more what these test results mean? Or where (if anywhere) I should go from here?

THANK YOU!!

Yes, there is a very clear connection between autoimmune thyroid and gluten. If you have high thyroid antibodies, you'll definitely want to consider being gluten free. Crud, I keep running into the need to post information about this but haven't saved citation links to the articles that support this! But the gluten can cause the body to generate many organ-specific antibodies, such as the thyroid ones.

You can google something like "Hashimoto's celiac" and you'll get a ton of stuff. Even if you confine your search (using advanced) to something like PubMed, there you'll get just journal articles.

Blood tests don't always tell the whole story. A gluten free trial for 3 months or so will tell you a LOT. And you don't need a doc's prescription to do it!

Best,

beachbirdie

[cahill]

Most doctors will not do an endoscopy with a negative blood test but talk to your doc and see if he will.

Some of us ( my self included ) have negative blood test but are clearly celiac.

Be sure to be done with any testing BEFORE going gluten free. A gluten challenge is beyond a nightmare.

With Hashimotos my endocrinologist recommends eating gluten and soy free ,even if someone is not "officially" diagnosed with celiac's .

There is a clear connection between Hashimotos and Celiacs,, both are autoimmune diseases.

I was diagnosed with Hashimotos before I was diagnosed with Celiacs.

[Skylark]

  On 7/18/2011 at 4:26 PM, beachbirdie said:

Yes, there is a very clear connection between autoimmune thyroid and gluten. If you have high thyroid antibodies, you'll definitely want to consider being gluten free. Crud, I keep running into the need to post information about this but haven't saved citation links to the articles that support this! But the gluten can cause the body to generate many organ-specific antibodies, such as the thyroid ones.

We put some references in this thread.

Sadly, my own experience is that gluten-free does not necessarily lower autoimmune thyroid antibodies. Mine appeared after I went gluten-free and have been steadily rising to titer over 400.

[beachbirdie]

  On 7/18/2011 at 7:51 PM, Skylark said:

We put some references in this thread.

Sadly, my own experience is that gluten-free does not necessarily lower autoimmune thyroid antibodies. Mine appeared after I went gluten-free and have been steadily rising to titer over 400.

Thank you so much for the link. Makes it a little easier to reach information that gets used a lot!

I don't know what happened to my thyroid antibodies, I was only ever tested once, and both my anti-TPO and anti-thyroglobulin were sky high. Scary high. Not that it is an indicator of the severity of disease, but it does indicate a lot of inflammation.

I am sure that getting the antibodies down doesn't work the same for everyone. I've heard many people say their antibodies go up if they use porcine thyroid for their replacement and they feel better on synthetic. My experience was opposite, I was able to reduce neck irritation quite a bit when I switched to natural thyroid (I use nature-throid; it's like Armour but without Armour's corporate disregard for their patients ).

[Enigma33]

Thank you everyone for all of your feedback. I guess, at this point, I am going to work on getting my thyroid levels and meds all even. After that has been figured out, I'll ask the doc for more celiac testing. But, in the meantime, I am just going to avoid gluten. I feel so much better without it, I can't even describe it. My energy is better (not great, but that has a lot to do with the hashimotos, too, I think). My brain fog is MUCH less, and I am not as tired. Then, on the days I eat something with gluten, I feel miserable- stomach rumbling right away, occasional diarrhea, and eventually muscle aches and complete fatigue and brain fog the next day. I guess I don't really need a "diagnosis" to go gluten free, but it might be nice down the road just so if there are complications from it, all of my docs are clear on everything that is going on with me. I also have to avoid soy, since that messes with the absorption of hormone meds... and I also am definitely lactose intolerant (give me a glass of milk, and I am cramped up within minutes, and diarrhea within about 1/2 hour. Give me lactaid milk, and I am ok).

Oh, and I am weaning off of Effexor, now, too, so that throws a whole new dimension into all of this!!

If anyone can recommend a good step-by-step of going gluten free, I'd really appreciate. I get really overwhelmed easily, and i have to admit, that going gluten-free has me very worried and overwhelmed. i need to find a methodical approach to making the switch..

Thank you again!!!

[beachbirdie]

  On 7/19/2011 at 4:06 PM, Enigma33 said:

If anyone can recommend a good step-by-step of going gluten free, I'd really appreciate. I get really overwhelmed easily, and i have to admit, that going gluten-free has me very worried and overwhelmed. i need to find a methodical approach to making the switch..

Thank you again!!!

It can make the transition easier if you just think about eating "whole foods", foods that are least processed, foods that don't come from the freezer department at the warehouse store. Easier to go all the way, "whole hog", "cold turkey", no easing.

Fresh fruits and vegetables, fresh lean meats, nuts and nut butters with apples or celery, eggs if not allergic. We have learned,for example, that a hamburger patty on a lettuce bed,with pickles, onions and ketchup/mustard/mayo tastes just as good to as without the bun as with it. We do "roll ups" with large-leaf lettuce and lunch meat, just as if we were using a tortilla.

We just stopped thinking about bread for a while, and didn't try to substitute gluten-free for regular. That helped prevent us from doing constant comparisons of "real" vs. "gluten-free" breads.

Those are just a couple of ideas. Do you cook much? If you are used to thinking about cooking, it's probably a little less daunting than if you are accustomed to using a lot of ready-made stuff. There are a few versions of gluten-free packaged foods out there, Amy's does a great frozen mac & cheese, Annie's makes a rice pasta version of boxed mac and cheese which is pretty good.

Lots of different ways to combine the basics and still have variety.

If you are one who likes structure and planning (I am a total loser at structure!) then sit down with pen and paper (or, in front of an Excel Spreadsheet or word processor) and make a menu of foods you love to eat. Look at them one by one, then think about a gluten-free alternative to each one.

Make a meal plan a week ahead, so you have time to think about what you might need from the store as well as being able to think logically about how much time to allow yourelf for meal preparation. That was probably the hardest thing for me, because we often did a lot of last-minute meals which was difficult because we didn't always have the right ingredients on hand.

[Gemini]

  On 7/19/2011 at 3:38 AM, beachbirdie said:

Thank you so much for the link. Makes it a little easier to reach information that gets used a lot!

I don't know what happened to my thyroid antibodies, I was only ever tested once, and both my anti-TPO and anti-thyroglobulin were sky high. Scary high. Not that it is an indicator of the severity of disease, but it does indicate a lot of inflammation.

I am sure that getting the antibodies down doesn't work the same for everyone. I've heard many people say their antibodies go up if they use porcine thyroid for their replacement and they feel better on synthetic. My experience was opposite, I was able to reduce neck irritation quite a bit when I switched to natural thyroid (I use nature-throid; it's like Armour but without Armour's corporate disregard for their patients ).

I agree with your opinion on this as this was my experience....one year before my Celiac diagnosis, I had my thyroid panel done (I have had Hashi's for almost 20 years and the Celiac diagnosis came 6 years ago) and my TPO antibody was 1200, with a normal range being under 40. I was miserable and couldn't understand why my thyroid was so out of control. I had been taking synthetic Levoxyl but it wasn't doing much because I wasn't absorbing.

After my celiac diagnosis, I kept getting re-tested for thyroid antibodies and they slowly came down the longer I went gluten free. I did have some blips in recovery and had episodes where I would swing from low to high, which is normal for autoimmune thyroid disease. I switched to Nature-throid

thyroid hormone because I discovered I do much better getting T3 along with T4. I went back a month ago for my repeat testing and I was shocked but delighted to discover there were no detectable antibodies found! Finally, after 6 years of the gluten-free diet, I had success. However, I have been playing with my dose for the past year again as I started an exercise program and needed to increase dosage. I have found changes in habits or activity level can affect what you need and sometimes it's hard getting the balance correct. I had it down to 90 mcg but now am back up to 130, yet the increase in dosage was not caused by antibody activity. It can be very frustrating trying to balance a thyroid!

[Skylark]

You two are so lucky. I went gluten-free in 2005. Anti-TPO appeared in 2008, and doubled when I had it run again this year, plus I have anti-thyroglobulin now. I agree about T3/T4. I take synthetic because my doctor seems to prefer it and now that we have the dose titrated again it seems to be working OK.

My advice for going gluten-free is to get yourself a rice cooker! They're wonderful. Measure rice, hit the button, come back to the kitchen for perfect rice an hour later. No boiling water, watching pots, or forgetting and having it boil over or stick to the bottom of the pot. Keep a bag of potatoes around to microwave or boil & mash too.

Try to go easy on mainstream processed foods. The label-reading isn't much fun until you're more used to it. There are a few, like Progresso soups that are clearly labeled gluten-free. Mostly shop the outside of the grocery store, where all the fresh, whole food is. Vegetables, fruits, nuts, meats you cook yourself, cheese, rice, and potatoes are all naturally gluten-free. So are most seasonings like onions, garlic, and plain herbs.