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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

32 posts in this topic

Just to be clear, I did not say the TSH level is bull.

 

I said that the statement "it should be close to 1"  is  not really true.

 

The many symptoms I exhibited when I was ill from celiac --which mimicked those of hypothyroidism exactly---AND the 5.3 TSH  reading

the endo doctor saw that ONE TIME gave him the impression I "needed to be " on thyroid medication.

It was a gross error. 

 

A TSH reading can bounce around for any number of reasons. I believe some people rush to be on medications when there is no need

because they read a lot of internet sites claiming the reason for all their problems is low thyroid. 

 

If you actually have thyroid disease, yes...medications are necessary, of course.

 

I am using the "you" here editorially.  :)

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Just to be clear, I did not say the TSH level is bull.

I said that the statement "it should be close to 1" is not really true.

The many symptoms I exhibited when I was ill from celiac --which mimicked those of hypothyroidism exactly---AND the 5.3 TSH reading

the endo doctor saw that ONE TIME gave him the impression I "needed to be " on thyroid medication.

It was a gross error.

A TSH reading can bounce around for any number of reasons. I believe some people rush to be on medications when there is no need

because they read a lot of internet sites claiming the reason for all their problems is low thyroid.

If you actually have thyroid disease, yes...medications are necessary, of course.

I am using the "you" here editorially. :)

Well, I think the tsh is bull.

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Well, I think the tsh is bull.

 

okay ,if you say so.... .that is your opinion and you have a right to it.

:)

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TSH isn't the most reliable. Many thyroid patients (and authors) are of the opinion that many doctors have lost the ability to treat thyroid patients by their symptoms since the almighty TSH was created. I agree with that based on my own experiences.

I posted that the TSH should be near a 1, and you are totally right that I did not word that well. I tend to slip into broad,sweeping statements like that when I am getting lazier with my responses. I should have written: Many hypothyroidism patients tend to feel their best when their TSH is close to a 1... I don't believe I have ever read that the same rule applies to euthyroid (normal) patients.

As for endocrinologists, I live in an area where they really only see patients with diabetes so thyroid patients just use their family doctors for the most part. Most of these doctors are discouraged from prescribing natural thyroid or T3. Many have to find a naturopath to give them that. It is a broken system (IMHO).

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Theres no holistic doctors which would deal with this that I know of :( . In what way do you feel better by adding t3? Although, apparentely my levels are "fine" my symptoms sway from hypo to hyper and I never know what kind of day I'm going to have and some of the symptoms interlink with celiac so its confusing on whether I've been gluttened or not!

I've even thought about buying t3 from ebay but then I would'nt know what dosage (Ive read it can be dangerous if you take too much) and of course there could be anything in those bottles! :( . I will try and find an holistic doctor though, thanks, thats a good idea :) .

By adding T3, my thyroid is more stable with regards to the T3 and T4 levels and I have more energy.  I was draggy and symptoms returned on T4 only.  My nails start to split and that's a sure sign for me that my thyroid is low.  I also can become anemic as thyroid function plays a role in red blood cell production.

I swung from hypo to hyper also for awhile.  It was after I had healed and started to absorb my meds better.  Then the dose became too high and it was no picnic.  It took about 6 months to re-figure the dose and I was going from high to low.  It happens with Hashi's but luckily, it happened only once to me. Once was enough.

 

Do not take any T3 that is bought over the counter.  You really need to be having blood levels checked and get a good starting dose from a doctor. The trouble is finding a doctor, I know!  Be patient because you are newly gluten free and things can be wonky until your gut heals and things settle out. I hope you can find someone that may be able to help you better......I know how frustrating that can be.

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TSH isn't the most reliable. Many thyroid patients (and authors) are of the opinion that many doctors have lost the ability to treat thyroid patients by their symptoms since the almighty TSH was created. I agree with that based on my own experiences.

I posted that the TSH should be near a 1, and you are totally right that I did not word that well. I tend to slip into broad,sweeping statements like that when I am getting lazier with my responses. I should have written: Many hypothyroidism patients tend to feel their best when their TSH is close to a 1... I don't believe I have ever read that the same rule applies to euthyroid (normal) patients.

As for endocrinologists, I live in an area where they really only see patients with diabetes so thyroid patients just use their family doctors for the most part. Most of these doctors are discouraged from prescribing natural thyroid or T3. Many have to find a naturopath to give them that. It is a broken system (IMHO).

 

IrishHeart had some excellent advice and I agree that TSH is not the same for everyone.  But, then again, I think that TSH should be included in the diagnosis process for thyroid disease, along with the rest of the panel but not relevant when re-testing once on medication. Geez.......I keep mine suppressed because once it starts to rise just a little, symptoms return.  I think the last testing I had, earlier this spring, it was around .01....yes, you read that right.  My T3 and T4 are in good range, mid to upper and that's when I feel good with no symptoms.  Like Celiac for me, when things aren't right, I pop with in your face symptoms.  Makes it easy for me to keep track of things.

 

Thyroid can be a bit of a trick to stabilize because other hormone glands all work with it in a loop and they need to all play together well. Not so easy.......

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As for endocrinologists, I live in an area where they really only see patients with diabetes so thyroid patients just use their family doctors for the most part. Most of these doctors are discouraged from prescribing natural thyroid or T3. Many have to find a naturopath to give them that. It is a broken system (IMHO).

 

It's the same here, N. and I agree about the "broken system" part! 

 and I was going from high to low.  It happens with Hashi's but luckily, it happened only once to me. Once was enough.

 

Do not take any T3 that is bought over the counter.  You really need to be having blood levels checked and get a good starting dose from a doctor. The trouble is finding a doctor, I know!  Be patient because you are newly gluten free and things can be wonky until your gut heals and things settle out. I hope you can find someone that may be able to help you better......I know how frustrating that can be.

 

same here. That swing thing was the worst. And, agree on the getting a baseline for a starting dose. Many people on here report having to adjust their meds (and those are meds of all kinds) after going gluten-free.

 

 

Thyroid can be a bit of a trick to stabilize because other hormone glands all work with it in a loop and they need to all play together well. Not so easy.......

 

which is why you need someone who understands how all the hormone glands work together  (which is supposed to be the ever-popular endocrinologist)

 

maddening, isn't it?  <_<

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