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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New Bloodwork Says My Tsh Is Low...what Does This Mean?
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9 posts in this topic

Because of my continued exhaustion, my doc did a new blood panel to check for other probs. (I was diagnosed Celiac by blood work and biopsy and have been on the gluten free diet for a little over 2 months.) He did TSH and T4, but not T3. I was diagnosed with Hashimoto's 15 years ago and have been on meds since then. Both of my brother and my sister also have been diagnosed with Hashis. 2 months ago, tests showed my thyroid was low, so doc upped it. Now he says it's high. TSH was .35. T4 was 1.3. He is lowering my meds to back where they were. In addition, my AST was 49 and ALT was 61, so he has sent me for an ultrasound of my liver. The other tests that were out of whack were one called RDW, which was 16.2, and my B12, which shocked me at a 1844. I had been taking extra per day, thinking it would help with the exhaustion.

Is it normal for the thyroid levels to fluctuate that much once you go on the gluten free diet? Have any of you also had the liver levels show up higher after being diagnosed?

Because of almost daily headaches from the time I was 13 or so, I have taken Ibuprofen regularly, compounded by falling and hurting my back in December and the aches and pains associated with Celiac I think. Almost hoping the high liver levels are from Celiac, not the Ibuprofen.

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Your TSH looks good for me, but how do you feel? Are you having hyper symptoms? You mentioned fatigue, what about the more typical hyper symptoms? Knowing your freeT3 would help, if that is high you might want to reduce meds but if it is fine, then go with it.

Hashi's can cause the TSH to change, and gluten-free can lower your med requirements....

I hope you get more help.:)

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Your TSH looks good for me, but how do you feel? Are you having hyper symptoms? You mentioned fatigue, what about the more typical hyper symptoms? Knowing your freeT3 would help, if that is high you might want to reduce meds but if it is fine, then go with it.

Hashi's can cause the TSH to change, and gluten-free can lower your med requirements....

I hope you get more help. :)

Thanks. I had been on the same dosage of thyroid meds for 15 years before going on the gluten free diet. Never could get my doc to see any differently even though I still struggled with not feeling ok. I recently tried to go to my sister's doc for the Hashimotos (he doesn't accept new patients unless they are related to someone else and does research). He said he would see me, but won't look at the celiac disease. I feel I need to see someone who look at both. We live in an isolated area and my choices have been limited without going 120 miles away (which is where my sister's do is too). There is one endocrinologist in our area, but no one seems to know anything about them except that the office wait time is 2 to 2 1/2 hours (common here). I could drive the 120 miles in that time. Would it be best to see someone for both? My current doc is an internist that I see for everything.

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You TSH is just of the "normal" range that many doctors feel comfortable about but it's in the newer "normal" that many endocrinologists are embracing.  Mary Shomon in About.com has good information:  http://thyroid.about.com/od/thyroidbasicsthyroid101/a/confusion.htm

 

I have Hashi's (dx in 1997) and over the years my dosage of Armour Thyroid has slowly increased -- until the last years of perimenopause or un diagnosed Celiac Disease.  Who knows (certainly not my doctors)?  During the last two years, my thyroid has been swinging rather wildly.  At one point for several months, I think it was swinging on a daily or weekly basis.  It was driving my doctors nuts and making me nuts!  I felt much worse  being hyper!  I experienced muscle weakness, anxiety (not the norm for me), eye pain, sleep issues and believe it or not, fatigue!  I was probably hampering my bone building process too!  I worried because my mother had Grave's and she has permanent eye damage.   Finally, I became very hypo (better than hyper).  For the last six months, we've been carefully adjusting my Armour and now I feel much better.  

 

At first I thought that celiac disease was preventing me from absorbing my meds, but now I think it had to do with the wild hormone ride going through that last year just before menopause.  

 

I'd say that during this time of healing, you need to get tested on a regular basis.  When I last got tested 6 weeks ago or so, I was at a 4.3.  That wasn't low enough for me to function (if I need a nap or coffee to get me through the afternoon, then my TSH is usually too high).  My dosage was slightly increased and I'm due for another test.  The good news is that I feel normal finally!

 

As far as your B-12, lots of people on this forum are deficient.  I never was, but I was low on Ferritin (iron stores). So, on the advice of my doc, I'm taking iron until my intestines heal and the ferritin levels are up -- and not to look at my hemolglobin levels since I have a genetic anemia anyway.  I guess lesson learned -- don't take supplements until you get the lab results!  I confess that I added Vit. D and took over 2,000 i.u./day, but I asked my doc to check my levels.  I'll get re-tested in another six months, as I may be taking too much now that I'm healing from celiac disease.

 

Sorry to hear about your back injury.  I'm assuming you were checked out.  The one shocking thing about celiac disease is that I recently fractured a vertebrae doing NOTHING!  Getting a bone scan in two days.  My only celiac disease symptoms were anemia and Hashi's.  Who would have thought that my bones were being compromised by celiac disease and my thyroid (hyper times)?  

 

Good luck!  

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You TSH is just of the "normal" range that many doctors feel comfortable about but it's in the newer "normal" that many endocrinologists are embracing.  Mary Shomon in About.com has good information:  http://thyroid.about.com/od/thyroidbasicsthyroid101/a/confusion.htm

 

I have Hashi's (dx in 1997) and over the years my dosage of Armour Thyroid has slowly increased -- until the last years of perimenopause or un diagnosed Celiac Disease.  Who knows (certainly not my doctors)?  During the last two years, my thyroid has been swinging rather wildly.  At one point for several months, I think it was swinging on a daily or weekly basis.  It was driving my doctors nuts and making me nuts!  I felt much worse  being hyper!  I experienced muscle weakness, anxiety (not the norm for me), eye pain, sleep issues and believe it or not, fatigue!  I was probably hampering my bone building process too!  I worried because my mother had Grave's and she has permanent eye damage.   Finally, I became very hypo (better than hyper).  For the last six months, we've been carefully adjusting my Armour and now I feel much better.  

 

At first I thought that celiac disease was preventing me from absorbing my meds, but now I think it had to do with the wild hormone ride going through that last year just before menopause.  

 

I'd say that during this time of healing, you need to get tested on a regular basis.  When I last got tested 6 weeks ago or so, I was at a 4.3.  That wasn't low enough for me to function (if I need a nap or coffee to get me through the afternoon, then my TSH is usually too high).  My dosage was slightly increased and I'm due for another test.  The good news is that I feel normal finally!

 

As far as your B-12, lots of people on this forum are deficient.  I never was, but I was low on Ferritin (iron stores). So, on the advice of my doc, I'm taking iron until my intestines heal and the ferritin levels are up -- and not to look at my hemolglobin levels since I have a genetic anemia anyway.  I guess lesson learned -- don't take supplements until you get the lab results!  I confess that I added Vit. D and took over 2,000 i.u./day, but I asked my doc to check my levels.  I'll get re-tested in another six months, as I may be taking too much now that I'm healing from celiac disease.

 

Sorry to hear about your back injury.  I'm assuming you were checked out.  The one shocking thing about celiac disease is that I recently fractured a vertebrae doing NOTHING!  Getting a bone scan in two days.  My only celiac disease symptoms were anemia and Hashi's.  Who would have thought that my bones were being compromised by celiac disease and my thyroid (hyper times)?  

 

Good luck!

Thanks so much for your reply. It has been an interesting couple of months. While I was going thru all of the testing for Celiac, I was going to my dermatologist and my internist. They kind of battled each other for a while. Neither believed I had DH or celiac. Dermatologist even said "Who told you that you have Hashimotos?" Your blood work doesn't show that, but all she had was TSH. She took a biopsy of two spots, but said they turned out negative for DH. I did not have active blisters at the time. I still feel I have DH. It's been much better on the gluten-free diet. Internist said my D3 was low, so put me on that. Said my thyroid was low and he upped it. Now he has cut back on my thyroid. It's just kind of been nuts, I'm assuming because of the celiac. But I'm doing better. I know it will take some time. I think I'll try to get in to see the endocrinologist, then if that doesn't work, I'll try the big city.

My back was feeling much better before going on the gluten-free diet. That's why I was worried about it. I was even worried about some of the other Auto Immune diseases. After reading some of the posts here, maybe it is just withdrawal and I just need to wait it out. I hope so.

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I have a back injury too. they`re a real drag. i hope it heals well and soon.  :)

 

Thanks. I had been on the same dosage of thyroid meds for 15 years before going on the gluten free diet. Never could get my doc to see any differently even though I still struggled with not feeling ok. I recently tried to go to my sister's doc for the Hashimotos (he doesn't accept new patients unless they are related to someone else and does research). He said he would see me, but won't look at the celiac disease. I feel I need to see someone who look at both. We live in an isolated area and my choices have been limited without going 120 miles away (which is where my sister's do is too). There is one endocrinologist in our area, but no one seems to know anything about them except that the office wait time is 2 to 2 1/2 hours (common here). I could drive the 120 miles in that time. Would it be best to see someone for both? My current doc is an internist that I see for everything.

 

I don`t have a family doctor doing anything for my celiac disease either, except run a few more nutrient level tests than normal.  I did go to an orthomolecular doctor who is considered àlternative` and he ran a few extra tests on me. For most celiacs, all you need to know is if your potassium, calcium, iron, ferritin, folate, B`s, D`s, zinc are okay. my doc discovered my A was low but I don`t know if that is common in celiacs.

 

You don`t need much to treat your celiac. I would say it is much much more important to have a really good doc for your thyroid issues. not many docs realize that TSH isn`t super helpful unless you also look at the free T4 and free T3 as well (T4 and T3 are not very helpful). TPO Ab tests for an autoimmune attack on your thyroid but I don`t put much stock in it. My TPO Ab has never been tested outside of the normal range even though my thyroid barely functions (I am on a full replacement dose of natural dessiccated thyroid). Because my TPO Ab is not high, my doctors claim I don`t have hashis but they have absolutely no idea why my thyroid is a dud.   :rolleyes:  When I was diagnosed with celiac disease and hypothyroidism my TPO Ab was 33.8 with a range of 0-34. After one year gluten-free my TPO ab was 24 (I think) so my doctor claimed it cured my hashis... even though he said I didn`t have it in the first place.  LOL

 

So get a good doctor for your thyroid (not always an endocrinologist) and then manage your own care. there aren`t many doctors out there who can, or will, address it all. get copies of all your labs and start a file with symptoms and meds - it makes it easier to manage your own care.

 

Best wishes

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I have a back injury too. they`re a real drag. i hope it heals well and soon.  :)

 

I don`t have a family doctor doing anything for my celiac disease either, except run a few more nutrient level tests than normal.  I did go to an orthomolecular doctor who is considered àlternative` and he ran a few extra tests on me. For most celiacs, all you need to know is if your potassium, calcium, iron, ferritin, folate, B`s, D`s, zinc are okay. my doc discovered my A was low but I don`t know if that is common in celiacs.

 

You don`t need much to treat your celiac. I would say it is much much more important to have a really good doc for your thyroid issues. not many docs realize that TSH isn`t super helpful unless you also look at the free T4 and free T3 as well (T4 and T3 are not very helpful). TPO Ab tests for an autoimmune attack on your thyroid but I don`t put much stock in it. My TPO Ab has never been tested outside of the normal range even though my thyroid barely functions (I am on a full replacement dose of natural dessiccated thyroid). Because my TPO Ab is not high, my doctors claim I don`t have hashis but they have absolutely no idea why my thyroid is a dud.   :rolleyes:  When I was diagnosed with celiac disease and hypothyroidism my TPO Ab was 33.8 with a range of 0-34. After one year gluten-free my TPO ab was 24 (I think) so my doctor claimed it cured my hashis... even though he said I didn`t have it in the first place.  LOL

 

So get a good doctor for your thyroid (not always an endocrinologist) and then manage your own care. there aren`t many doctors out there who can, or will, address it all. get copies of all your labs and start a file with symptoms and meds - it makes it easier to manage your own care.

 

Best wishes

Thanks, you make a lot of good points. Hope you feel better soon too.
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Dermatologist even said "Who told you that you have Hashimotos?" Your blood work doesn't show that, but all she had was TSH. 

 

Yikes. Does she know 90% of all adult hypothyroidism is caused by an autoimmune disease?! (Hashimoto's or Graves). Sigh. You might want to ask her why you have a thyroid problem. If it's not congenital hypothyroidism (i.e. you were born without a thyroid), thyroid cancer (i.e. you had to remove your thyroid) or a problem elsewhere (such as in the pituitary gland) the only reason you have thyroid disease is *because* of antibodies against your thyroid. Doctor's don't look at the autoimmune aspect of thyroid disease at all, despite the fact that it is very much an autoimmune problem.

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Yikes. Does she know 90% of all adult hypothyroidism is caused by an autoimmune disease?! (Hashimoto's or Graves). Sigh. You might want to ask her why you have a thyroid problem. If it's not congenital hypothyroidism (i.e. you were born without a thyroid), thyroid cancer (i.e. you had to remove your thyroid) or a problem elsewhere (such as in the pituitary gland) the only reason you have thyroid disease is *because* of antibodies against your thyroid. Doctor's don't look at the autoimmune aspect of thyroid disease at all, despite the fact that it is very much an autoimmune problem.

I've had the same problems as everyone else on this forum with my thyroid problems and doctors. I went to her initially because I thought I might have DH...blisters on my elbows and back of neck popped up seemingly out of nowhere. By the time I got in to see her and she was able to biopsy the spots, the blisters were only crusties. She told me from the beginning she didn't think it would do any good. Didn't look like any DH she had seen before. She said most labs don't know how to do the test properly. It was actually the DH that led me to ask for the tests for celiac. Still think I have DH too. I flares up when get gluttened, but is much better otherwise. I haven't been back to see her pretty much since then.

I know what I went thru before being diagnosed with Hashimotos. It was my GYN that actually figured that one out...actually my sister's GYN, my GYN and regular doc told me it was all in my head:) Sound familiar? I went to my sister's doc in a large city 120 miles away and he found both the Hashis AND a tumor on my ovaries that required removal the next week. Ended up with a hysterectomy at 35...OH, happy day! I had started to think I was losing my mind.

Luckily, the blisters got me researching and I found this forum. I went to my doc armed with the right things to ask for and tests have shown positive and I am now getting better. Thank God.

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