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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.

Thoughts On My Son's Most Recent Labs?
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2 posts in this topic

So I've posted quite a few times about my celiac diagnosis process and that of my son, who's four. But just for background, he's had failure to thrive, markedly small stature since he was one. I thought he was tested for celiac because it was discussed but looking back see all they did was stool testing for fats. In addition to slow growth, he has motor and speech delays, weak (stained) teeth, dark circles under the eyes, pale skin and starting in August has had terrible diarrhea frequently (constantly until we took him off gluten following endoscopy). He's very clumsy (and so am I).

I started reading about celiac and also realized I have it, which blood tests confirm across the board (deciding on the endoscopy still). I saw a celiac specialist who confirmed it and have my boys scheduled to see a pediatric celiac specialist at the end of the month. His GI swears he doesn't have it based on biopsies (more than six of duodendum). But she also doesn't really offer any other idea of the problem (I think she actually thinks I'm making up the diarrhea to a degree).

After some nagging she did run another celiac panel for me (the first she ran through quest was negative, but not the full panel).

Here are his results from Prometheus:

Notes: "Results may support a diagnosis of celiac", "Serological markers for celiac disease detected" (I'm no expert but I think I can interperet this part...)

DGP lgG .5 EU/mL: negative: referenc range <4.9EU/mL

DGP lgA 15.0 EU/mL: positive: reference range <6.1 EU/mL

TTG lgA .4 U/mL: negative; reference range <10.3 U/mL

EMA lgA: negative: Reference range "negative"

Total lgA: 294 mg/dl (3-13 years 41-395 mg)

Genetics: DQ2/other low risk gene, relative risk low

I think it looks like a duck, quacks like a duck...No matter what I'm doing gluten free indefinitly with him. I would like to have a clearer diagnosis for people who will ask about it (meaning people who might be feeding my son and think I'm crazy) but I believe this kid has celiac.

Also, we saw the GI two weeks ago today, went gluten free about 12 days ago, following endoscopy. According to her nurse he's grown 3/4" in that time. Guess it was the Halloween candy?

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Positive DGP with obvious symptoms and a duck for a Mom - I'd say you've got a duckling with a great Mom!

I was only weakly positive at 43 with total villous atrophy - my teen sons had different symptoms for years, but both tested negative upon my diagnosis. They were older so each removed gluten at different times and each has had symptom resolution - had they decided to wait until they tested clearly celiac - they would have likely ended up as sick as myself and my eldest daughter.

The tests are far from perfect.

Keep up the great work and watch him grow :)

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    • Newbie Mom - How is my son feeling?
      I agree. As an adult its a little easier to withstand the rolling of eyes and exaggerated sighs from people who think you are over reacting and being too fussy.  My youngest has anaphylaxis to fish and seafood and people are incredibly understanding and careful - but it seems celiacs has become a "fad" due to gluten intolerant people removing credibility from true celiacs.  Adults can argue but kids are vulnerable. Socially its really isolating for them.    I totally relate to the waiting on endoscopy. For my very sick 12 year old the 8-9 weeks we waited for sheer hell and I felt I was feeding him rat poison. Now my 17 year old is waiting on his, booked for later this week.  Its a total nightmare waiting knowing you can start the healing if only you could stop feeding them gluten.  But I figure for future reference, having a solid diagnosis via biopsy is important. Good luck to you and your son.
    • Newbie Mom - How is my son feeling?
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    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
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    • Newbie: mother to coeliac kids
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