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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.

Do I Need To Be Re-Tested?
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3 posts in this topic

Howdy all,

Some background before I get to my question: I was diagnosed with hypothyroidism in the late '90s, am currently taking a daily dose of 112mcg Synthroid. I have 2 kids, one of which is a 8-month old who is still breast feeding. I'm also on the progesterone-only birth control pill. Up until a few days ago, I was not taking any other medications or supplements, including vitamins. After I got my test results back, I started taking a generic multivitamin and vitamin D.

Pre-pregnancy, I went to see my GP for what I considered an exorbitant amount of gas. I'd had no change in diet or anything else that I could blame for this sudden change in the way my body was working, and in my research on the subject, I started to read more about celiac disease and gluten intolerance. I asked this GP if I could be tested for these. Her response was basically no, but you can do an elimination diet if you want. I left the office very frustrated. I felt an elimination diet required time and energy I just didn't have at that time, not to mention how fallible they can be. So I washed my hands of the whole thing and just dealt with the gas as much as I could.

Fast forward to last month; I got a letter in the mail that this GP was no longer with that office and would I like to schedule an appt. with a new doctor? Heck yes. My new GP was much more amenable to testing. She diagnosed me with PCOS on the spot, and wanted to check for iron levels, vitamin deficiencies, and pre-diabetes. She said that gluten intolerance was "really low on [her] radar," but that she'd test me if I wanted, which I did. She didn't seem very knowledgable about it; she had to pull out a giant reference manual to look up the insurance codes. And therein lies my question. I don't think they tested me correctly. This is what my results say:

IGA/IGD/IGG/IGM-EACH

Immunoglobulin A, Qn, Serum = 385 mg/dL (range 91-414)

Immunoglobulin D, Quant, Serum = 4.16 mg/dL (range <14.11)

***Immunoglobulin G, Qn, Serum = 1670 mg/dL (range 700-1600)***

Immunoglobulin M, Qn, Serum = 178 mg/dL (range 40-230)

ENDOMYSIAL ANTIBODY

values were all <1:20, which is negative

GLIADIN ANTIBODY

Deamidated Gliadin Abs, IgA = 8 (range (0-19)

Deamidated Gliadin Abs, IgG = 5 (range 0-19)

FERRITIN

Ferritin, Serum = 31 (range 13-150)

VITAMIN-D

***Vitamin D, 25-Hydroxy = 28.7 ng/mL (range 30.0-100.0)***

T4, FREE

T4, Free (Direct) = 1.21 ng/dL (range 0.82-1.77)

TSH

TSH = 2.630 (range 0.450-4.500)

INSULIN, TOTAL

***Insulin = 27.7 uIU/mL (range 2.6-24.9)***

The results I starred we're all highlighted in my lab reports, yet I got a note from the nurse that my results were all "normal." Sheesh. It doesn't seem that they did a total IgA test, so now I'm left to guess if that high IgG result is because of my hypothyroidism, non-celiac gluten intolerance, or a false positive that doesn't mean anything. I'm a little apprehensive about asking to be retested, though, not just because they seem a little inept at this, but also because I just got a bill in the mail from the first round...apparently my insurance doesn't want to cover this stuff. :/

What do you think, those of you with the experience I lack? Can you glean anything from these piecemeal lab results, other than the fact that I am dancing on the edge of all sorts of problems?

-Becca

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Hi Becca,

It looks like your new GP didn't bother with a full celiac panel, which is normal... and frustrating! What is strange is that the GP decided not to run tTG IGA and IGG...that one is usually pretty common and also quite an important piece of the celiac puzzle, IMO. It does look like your celiac tests were all negative, though. The celiac tests are only accurate if you are not taking a steroid, have sufficient immunoglobulin levels, and have been on a gluten containing diet (equivalent to 2-4 slices of bread per day) for 4+ months. Also, keep in mind that the celiac tests have a 25% false negative rate. :ph34r:

She did test your immunoglobulin quantities (IGA, IGG, IGM and IGD)... this is usually done to look for immunodeficiencies. Yours are all in the normal range, except for IGG. High IGG levels can sometimes indicate an infection, but it could also simply be a fluke, as it is not all that high. I'd keep an eye on it though.

If you choose to get retested, the full celiac panel includes (so far there are no tests for gluten intolerance):

EMA IGA (they do offer EMA IGG but it is much less common)

DGP IGA & DGP IGG

tTG IGA & tTG IGG

Serum quantity IGA

If you do choose to pursue further testing (blood or biopsy) make sure to continue eating gluten! After you are satisfied with the extent of the testing, go ahead and try a gluten free diet (especially given your symptoms)! Most people say you should give the "diet" a good 6 months before deciding whether it helped or not.

http://www.celiac.co...ewbie-info-101/ - This thread is a godsend...

Welcome to the forum and good luck! :)

Laura

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I think the only tests she missed, as Ninja said, was the ttg IgA and ttg IgG; the serum IgG test was just to ensure you are not deficient in those so your other tests will be accurate.

As of now, it appears that you are not a celiac but there is a 25% false negative rate (approximately) with the blood tests so there is a chance you are in that minority. If you are concerned that gluten is an issue for you, go gluten-free when your testing is complete. There is a good chance that you are Non-Celiac Gluten Intolerant (NCGI) which has all of the same nasty symptoms but doesn't involve an autoimmune attack (we think). The first few weeks gluten-free are tricky, but I can honestly say that it was pretty smooth sailing after a month or so.

How are your hypothyroid symptoms? Many with Hashi's say they feel best when their TSH is close to a 1 and the Free T4's are at 50-75% or the refernce range (closer to 75 is often cited as best). Your TSH could be a tad bit high for one who is being treated, and your FT4 is just below 50%. Hypo slows down digestion and metabolism so it could be the cause of some problems too.

I would question your doctor about your vitamin D levels. They are way too low. You might want to look into taking a few thousand IU of D a day; it is generally safe to take 4000UI or so a day.

Also, your insulin is high, that could indicate pre-diabetes and the need to reduce your processed foods, flours and sugars before you get sicker...

Good luck. :) I hope you feel well soon.

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