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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.

Initial Blood Work Results
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8 posts in this topic

My Primary mailed me my initial blood work...the test she took which made her send me to a GI specialist in the first place.

I have been reading and researching how to read it, so I will just put it here. I understand the test to be totally negative

It says: Celiac Panel (Quest)

TransglutaminaseIgA Autoantibodies:

<3.0 U/ml (<4.0 U/ml)

less than 4.0 U/ml negative

4.0-10.0 U/ml weak positive

>10.0 Positive

Reticulin Ab (IgA) screen

Negative

Endomysial Ab (IgA) screen

Negative

Deamidated Antibody IgG

4units (<20 units)

Deamidated Antibody IgA

1units (<20 units)

IgG and IgA

<20 units antibody not detected

>20 or greater units antibody detected

The reason my primary sent me to the GI was because she also took a test of my IgA itself which says:

<6.67 (low)

with a normal range of 70-420 mg/dl

So she said I am IgA deficient and therefore this test was invalid.

She said my iron is low as well as my vitamin D, which was EXTREMELY LOW.

My thyroid is wacky, but it has always been. I have been on levothyroxine for 13 years. I have some years where my levels are stable and others where it is crazy high, like right now. She cant seem to get a good handle on it and my prescription dosage is at an all time high. I think it is time to actually go to an endocrinologist instead of just my primary for that :(

Anyway...So I went to the GI specialist, making sure to tell her I have a thyroid issue and I am apparently IgA deficient, but she seems to forget all that and is shocked when my thyroid level comes back all high and tries to get me to start a presciption and I am like..hi..I already do. And then she forgets that I told her I am IgA deficient.

So we retake all the blood work, which I took AFTER going gluten-free. I called yesterday to get those results, as well as my endoscopy but I am still waiting.

I am preparing to go back to gluten free and seeing if that helps again. I know you have all been listening to me whine and whine about the same thing but it really helps me just to type it all out and I appreciate anyone who listens. My neice has also gone gluten free despite being told she is "fine" and has been feeling so much better. we have come to believe that gluten just may be "evil" after all. Anyway.thanks!

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It is evil. And I think almost everybody would feel better with less of it in their diet! Hope you will soon!

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My thyroid is wacky, but it has always been. I have been on levothyroxine for 13 years. I have some years where my levels are stable and others where it is crazy high, like right now. She cant seem to get a good handle on it and my prescription dosage is at an all time high. I think it is time to actually go to an endocrinologist instead of just my primary for that :(

Would you have a little more detail on your thyroid? What does your doctor mean when she says your thyroid is "HIGH". Is she measuring your Free thyroid hormone? Or is she just measuring your TSH? A person on supplementary thyroid hormone should be dosed based on free thyroid levels, NOT TSH alone. The TSH feedback mechanism gets changed with the introduction of thyroid meds.

I think that endocrinologists are not always the best choice for thyroid care, but that is just my opinion from personal experience and remembering the experiences of many thyroid friends. Might want to check out some good thyroid forums for doctor advice (there's a good one at about.com).

Have you had thyroid antibodies tested? (anti-TPO and anti-thyroglubulin antibodies)

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Would you have a little more detail on your thyroid? What does your doctor mean when she says your thyroid is "HIGH". Is she measuring your Free thyroid hormone? Or is she just measuring your TSH? A person on supplementary thyroid hormone should be dosed based on free thyroid levels, NOT TSH alone. The TSH feedback mechanism gets changed with the introduction of thyroid meds.

I think that endocrinologists are not always the best choice for thyroid care, but that is just my opinion from personal experience and remembering the experiences of many thyroid friends. Might want to check out some good thyroid forums for doctor advice (there's a good one at about.com).

Have you had thyroid antibodies tested? (anti-TPO and anti-thyroglubulin antibodies)

I am currently on 175mcg of levothyroxine..

the levels she took are:

TSH 8.12 (high) 0.35-5.50 uIU/mL

FREE t4 1.17 (0.89-1.76 ng/dl)

T3 Total 0.98 (0.6-1.81 ng/ml)

Thyroid Peroxidase Autoantibodies

325 U/mL (high) (<60 U/mL) I am guessing this means the "normal" is less than 60 U/mL and I am at 325...which is high?

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I am currently on 175mcg of levothyroxine..

the levels she took are:

TSH 8.12 (high) 0.35-5.50 uIU/mL

FREE t4 1.17 (0.89-1.76 ng/dl)

T3 Total 0.98 (0.6-1.81 ng/ml)

Thyroid Peroxidase Autoantibodies

325 U/mL (high) (<60 U/mL) I am guessing this means the "normal" is less than 60 U/mL and I am at 325...which is high?

Ahhh...I see now. When your doc says your thyroid is "crazy high" she is saying your TSH is high. That actually means you are probably suffering from low thyroid. The body makes more TSH in the attempt to whip the thyroid gland into producing more hormone. And if your doc is dosing based on TSH, she is trying to hit a moving target. And rocking the boat while trying to hit it.

My doc always runs the Free T3 test, it is a better measure of your function than the Total T3. You see, most of the T3 in our bodies is "bound", meaning it is useless to the cells. And the cells use Free T3 for metabolism. All the rest is just storage that is inaccessible to the body. You don't know how much of your T3 is available for use...I'd bet dollars to donuts your Free T3 is VERY low.

You might talk to your doctor about adding some T3 to your regimen. Either a little bit of synthetic T3 (brand-name Cytomel in the USA), a combination of desiccated thyroid (Armour, Nature-throid, Erfa in Canada/UK) and synthetic T4, or simply switch to desiccated thyroid. Not everyone can do straight porcine thyroid because the T4/T3 ratio is a bit different in pigs than humans. But many people thrive on it. Most endocrinologists won't touch the stuff with a ten-foot pole.

I love my natural/synthetic combination, it gave me my life back; I was a mess.

Perhaps, if your doc is really "with it", she might be persuaded to run a Reverse T3 and Free T3. If you have a messed up Reverse T3 Ratio (RT3 ratio) you might need a little different treatment. You can read more about reverse T3 (and thyroid treatment in general) at Stop the Thyroid Madness. Lots of really good information over there. Poke around and look for the stuff on reverse t3. And read about how patients with thyroid disease are woefully mistreated much of the time.

With you having Hashimoto's, having the elevated thyroid antibodies, low Vit. D, low iron, LOW IgA, you are sure looking like you are in the right place here in a celiac community!

There's lots more, it's really complicated, but maybe this will give you some stuff to think about and ideas for more questions to ask your doctor.

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I hace never been told I have Hashimotos...is that what you.see?

I feel so out of.control of myself :(

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I hace never been told I have Hashimotos...is that what you.see?

I feel so out of.control of myself :(

Oops. I can't say it is Hashimoto's because I'm not medical! One of the sets of antibodies that can point to Hashimoto's is the thyroid peroxidase that is listed in your tests. The other one would be anty-thyroglobulin, which they did not run. Interesting your doc did not say anything about it though.

Your TPO level is not terribly high, but it does mean you have autoimmune activity going on. Sometimes thyroid antibodies are stimulated by the body's reaction to gluten. I read about it in one of the medical journals I've been digging up, but can't get my hands on it just this minute. Ah...here's one...http://www.ncbi.nlm.nih.gov/pubmed/?term=Tissue%20Transglutaminase%20Antibodies%20in%20Individuals%20with%20Celiac%20Disease%20Bind%20to%20Thyroid%20Follicles. That article talks about tissue transglutaminase antibodies in celiac patients binding with thyroid tissue.

That is what creates the suspicion for gluten problems even with those negative celiac tests. Autoimmune thyroid and celiac often go together.

Do not despair!

I know it feels overwhelming, but for me, I feel much less crummy about having celiac/Hashimoto's than I would feel about many other conditions. With Hashi's and celiac, it is relatively easy to treat, and doesn't have to be limiting or expensive. And a lot of people with hashimoto's find great improvement with the gluten-free diet.

Hang in there, it WILL get sorted out for you! Just keep asking questions, as you know there are so many people here with so much experience and wisdom, and they are ready and willing to advise! Y

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Thank you so much. I am so enjoying all the help here and the research I have been doing on my own. My primary is very.good, I am just a new patient of hers, and she has been.instrumental in getting me to actually be involved in what is going.on with my body. Ally other drs just threw pills at me but this one runs tests and calls to check.on.me. Ive only been with her for 6 mos, so I guess thats why I dont have solid answers yet, but shes willing.to listen, unlike the GI O just saw. I have always been raised to trust doctors, that they were smarter than me and experts in their field so I never questioned.them. But now I.realize I.really.do need to be my own advocate!

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