New Here With Questions About My 2yo

[EthansMom]

Hi there, my name is Ashley Im mother to Elliott and Ethan.

My youngest son Ethan has been sick on and off his entire life. He has alot of the celiac disease "markers" but were awaiting yet another visit to his Gastro Dr. He had a fever of 105 off and on since Jan 4, 08. Finally his fever broke about two weeks ago after a five day visit to the hospital. He presents with failure to thrive, poor weight gain (turned 2 on the 21st and weighs 22lbs, he was 9lbs15oz at birth) distended abdomen, very foul stool, and chronic fatigue. He is also developmentally delayed and has "asthma-like" symptoms that calls for him to be on the nebulizer (pulmicort) twice daily, he has had countless URI. He also has iron deficiency anemia that calls for him to take ferous sulfate three times daily.

They did extensive blood work on him this last time he was in the hospital, including IgG, IgA, IgE, exc and his IgA levels were "positive" (they did the Immunoglobulin tests because they felt he could possibly have a PIDD which they have ruled out, they have also ruled out Cystic Fibrosis, they did both sweat and DNA tests, among several other things they have also ruled out) Im having difficulty understanding the results as I have found conflicting information online as to what that means. The range is over 31=positive. his number was 53, but he also had another sheet with the same results on the same day with a different reading (were talking 27pages worth of results to blood work, urine, stool, exc over the course of 5 days and there is still blood work pending) He does have good absorption and they do not believe its a malnutrition issue although anything is possible. He is on a high caloric diet until we go to all the follow-up appointments.

My mother has been diagnosed with diverticulitis but i have heard of celiac disease being misdiagnosed as diverticulitis, she is contacting her dr about having further blood work done to know for sure, they diagnosed her with it based on a CT scan alone. My husbands Aunt has fibro mialgia (spelling?) My paternal medical history is unknown.

WOW that became long winded, I just wanted to say hello and hopefully can get a bit more information about celiac disease.

[Ursa Major]

Hi Ashley, and welcome to these boards. I don't understand why the doctors claim that he doesn't have malabsorption, when he has iron deficiency anemia? The only way a child has anemia would be malabsorption! (other than losing a lot of blood)

Anemia is one of the most common celiac disease symptoms. So is every other symptom you describe. Failure to thrive is a red flag for celiac disease!

He has had all the testing done, some of which was positive for celiac disease. There is absolutely NO good reason to wait to put him on the gluten-free diet right now. It can't possible harm him, and he might start improving immediately!

Make sure you remove dairy and soy as well, as they can stop him from healing (and I mean ALL dairy, not just lactose). You can reintroduce dairy after a couple of months or so to see if it is okay.

I am glad your mother will get tested for celiac disease as well. Ethan obviously inherited it from somebody, and it may well be your mother.

And while you are at it, why don't you join Ethan in eating gluten-free? You may find that you will feel better than you know you could. Many parents here have found that obviously they have a gluten intolerance as well, when they joined their children in the gluten-free diet.

It is much easier to cook only gluten-free, as there is less risk of cross contamination for the person with celiac disease, and easier for the cook to just cook one meal.

I hope that Ethan will feel better soon and start growing and thriving.

[NewGFMom]

It's the TTG test that is the most accurate for celiac. I think TTG is short for transglutaminase. If you go through his test results, can you find a line item for that?

[Darn210]

The blood tests can get confusing, especially when you are wading through all the othe nonCeliac testing that was done, too.

There are several tests that can be generalized as IgA. Did your different Iga readings have any other notations such as

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

[EthansMom]

ok, here is the most recent blood work results..

gliadin AB IGA results were 36 and on the next page it was 53. the range was

19 units or less....negative

20-30 units.........weak positive

31 units greater...positive

his tissue trans. ab IGA says 1

19 units or less: negative-no signifigant level of detectable IgA antibodies against human tTG.

20 units or greater: positive, exc.

he did have a different test as a yearling that was:

CELIAC DISEASE PANEL

TISSUE TRANSGLUTAMINASE ANTIBODY, IGA, TTG ANTIBODY, IGA that was in normal range

(result was <3,

reference range: <5 negative

5-8 equivical

>8 positive

at that time his IGA serum was 51 (range was 12-75) and the gliadin antibody was <3 and reference range was <11.

his IgG and subclass tests were all within normal range, his ENT was pretty sure he had IgG subclass 2 or 4 deficiencies and as it turns out he doesnt

so if someone can help me decode that information I would be thrilled.. right now I just have a book of several numbers and tests and have no clue what the terms mean. They (doctors) have tried to pin so many different things on him and so many of them fit perfectly to later be disproven which is wonderful but we do wish we could have a concrete answer. thanks so much everyone for your help thus far its greatly appreciated.

[gfgypsyqueen]

Hi Ashley and Ethan. Sounds like you have a little Celiac too. We also had battles with the Drs over the baby, but finally tried the diet and she is also a CEliac. The change is huge. I don't understand why Drs fight the possibility that an infant or toddler could have Celiacs! It sounds like your little guy is having a really hard time. Try the diet for 6 mths. Do it 100% gluten-free/CF. You should start to see small changes pretty quickly if it is Celiacs, but keep him gluten-free/CF for a few months. With mine, the accidental glutneing happened within a month or two and she had absolute reaction to Gluten! So she is a CEliac. The pediatrician is slowly believing me that she has changed on the diet.

What part of Florida are you in? I am in the SouthWest near Fort Myers.

[EthansMom]

Im in South East Florida, near Ft. Lauderdale. about an hour north of Miami.