Does My Toddler Have Celiac Disease Or Not?

[sebastians-mommy]

Hello,

I have a two-year-old son with many, many food allergies (milk, soy, eggs, wheat, barley, peanuts, treenuts, coconut, sesame, barley, oats, peas, bananas, pears, cherries, safflower oil, rice, fish, shellfish, etc, etc.). Needless to say, the last two years have been harder for my family than I ever imagined they could be.

Last summer, we finally had my son scoped and flex sig'd to find out why he was tolerating nothing. He was NOT eating (or had ever eaten) gluten, except for two bowls of baby oatmeal before we found out he was allergic. His results read:

1) Colon (biopsy of sigmoid colon): colonic mucosa with non-diagnostic findings. No prominence of eosinphils (mother's note: this ruled out suspected Eosinophilic Esophagitis, whic is why he underwent the tests).

2) Rectum (biopsy): colonic mucosa with lymphoid aggregate. No prominence of eospinophils.

Bloodwork:

IGA serum: 12 mg/dl (normal range was 81-463 for his age/weight at the time).

Endomysial Antibodies: negative

Tissue Transglutaminase IGA: 0 units (I guess because his IGA was so low??)

He had a very high platelet count (497 K/cu mm, with 150-350 being the normal range)

He also had a high white blood cell count (17880 /cu mm, with 6000-17500 being the normal range).

Based on these results, his gastroenterologist diagnosed him with Celiac Disease.

Based on these results, his allergist (leading pediatric allergist in the world) diagnosed him with severe food allergies and removed all solid food from his diet (My son was then Neocate hypoallergenic formula-fed only from 9 months of age to 17 months of age). We are slooooowwwwly introducing foods - we are at 12 right now, with many fails in between. We are obviously avoiding gluten because he is allergic to everything that contaisn gluten anyway, except for rye - we never gave him rye, nor do I plan to. His allergists insists that he is allergic and NOT a Celiac.

I myself was tested last year, and I tested normal for IGA and the Tissue Transglutaminase, and equivocal for IGG. So that was obviously no help. I was retested three days ago and hope to get results later this week.

My question is this - how do I know if my son has Celiac or not? These two doctors totally disagree. I am just wondering if I should hold out hope that my son just has many grain allergies that he could very well outgrow OR if I should accept that he has Celiac?

Thanks for your time and advice. I appreciate it!!!

~Melissa

[lovegrov]

Well, your GI knows more about celiac disease and your allergist knows more about allergies. Only you know them. I gues you could opt for a third opinion, but I'm not sure who you would see unless you want to try to get into one of the top celiac disease guys in the country.

I don't see any way to determine whether your son will be able to tolerate grains later in life until, well, he ages and reaches that point.

richard

[sebastians-mommy]

Thanks for your reply. I guess I am just trying to figure out if "colonic mucosa with lymphoid aggregate" always means Celiac. From my own research, that doesn't seem to be the case. This is also the only "proof" the GI has, so I just don't know if it DOES mean Celiac.

It's hard when to doctors have such conflicting opinions, especially when my son has an entire other host of issues thrown into the mix.

Thanks,

Melissa

[lovegrov]

Thanks for your reply. I guess I am just trying to figure out if "colonic mucosa with lymphoid aggregate" always means Celiac. From my own research, that doesn't seem to be the case. This is also the only "proof" the GI has, so I just don't know if it DOES mean Celiac.

It's hard when to doctors have such conflicting opinions, especially when my son has an entire other host of issues thrown into the mix.

Thanks,

Melissa

I agree that your situation is very tough and I'm so sorry for you. I'm afraid I'm no help on the phrase you asked about, but it sounds like different very competent physicians could come to different conclusions.

richard

[mommida]

You could opt for the genetic testing to determine if your son has the genes associated with Celiac. It is not a fool proof test and is not fully covered by most medical insurances.

My daughter has Celiac and Eosinophilic Esophagitis. So it is possible to be dealing with Celiac and another disorder/disease/allergy.

Like Richard has pointed out, each doctor has their own specialty. They are making the diagnoses from their experience.