Questions About My 5 Year Old's Test Results - Md Not Helpful!

[Cara in Boston]

My 5 year old son recently was tested for Celiac and came back positive on two of the three blood tests. From what I could gather (checked out several books from the library) our results seem to suggest that he is gluten intolerant (for sure) and may or may not have celiac disease. We finally got in to see a "specialist" (Pediatric GI/Nutrition) and I had lots of questions, but he seemed more interested in just focusing on the Celiac diagnosis . . . more tests, don't change his diet because we will probably need to do a biopsy, etc. etc. etc.

Frankly, I don't really need to know if he has celiac or not, since I would be changing his diet to gluten free ANYWAY based solely on his suspected intolerance.

When I asked the MD about this he was very condescending ("Lets not get ahead of ourselves with any changes or anything . . . lets find out if he actually has Celiac or not . . . the biopsy is no big deal, etc. etc.")

In any case, we will be finding a new doctor - Boston Children

[srall]

Um, I'll certainly defer to others' opinions since my daughter was diagnosed based on dietary response. We have a wonderful pediatrician. She was so so so so sick that I personally didn't give a rat's ass what the doctors ended up saying. If gluten free helped her feel better, then that was going to be the plan.

My brother went through all the testing and because he had a negative blood test for celiac the GI told him he could continue to eat gluten, even though he had so many symptoms that I feel could have cleared up through a gluten free diet. In fact, the only time he's felt healthy in years was at the beginning of the Adkins diet. But because he's not diagnosed he won't change his diet.

I just think so many people here have similar stories with unhelpful doctors. It's very very frustrating. Good luck.

[Roda]

My youngest son does not have an "official diagnosis" either, however I do. I also have a very supportive allergist and he wrote a note for the school for his need to avoid gluten and the school is being really accomidating. I had changed allergists and requested allergy testing because I felt food might be at the root of some of the issues he was having. Skin testing (3rd time and he is now 6) all negative again. Allergist said really that those negative tests didn't mean much if he had an intolerence. Our's feels that his food issues he had as a baby didn't go away, just are manifesting themselves differently as he gets older. He ran a celiac panel on him and he had his ttg show up positive (it was negative 2 yrs prior). He mentioned referring to a GI and I declined. Knowing what I know now since my diagnosis, I felt alright putting him straight on the diet full knowing what it would mean for future testing. He is doing wonderful, and the "melt downs" you describe in you child, mine used to have also, are very few and far between now. He had one recently and a few days later he was diagnosed with strep tonsillitis (behavior is the first thing to go when my kids get strep too). He otherwise didn't "seem" to have many issues recently either except the complaints of his stomach hurting off and on since last June. He rarely complains now. It is coming up on almost 3 months gluten free for him soon. The beginning of March I am going to do a gluten challenge. I plan on keeping him gluten free after it is over, but I want to use the challenge for diagnostic purposes since we didn't do the scope and biopsy.

[Roda]

Just fyi, the moodieness and meltdowns for about a week after removing gluten got a little worse then started getting better. I also noticed a spike in his appetite. Others on here have experienced similar things and I believe it was a result of detoxing from the gluten. The appetite has stabalized. It has increased some recently, but not like right after gluten removal, as I think he is going through a growth spurt.

[cassP]

When I asked the MD about this he was very condescending ("Lets not get ahead of ourselves with any changes or anything . . . lets find out if he actually has Celiac or not . . . the biopsy is no big deal, etc. etc.")

Here's what his report said:

IgA - 69

TTG Ab, IgA 9.96

Gliadin Ab(s), IgG 58.88

Gliadin Ab(s), IgA 11.58

ok, so, i am not familiar with the Iga Serum range for kids. your son's is at 69- i know for an adult- that would mean a slight Iga deficiency which would mean that any Iga test (be it ttg or antigliadin) would be innacurate or false negative. but idk- 69 for a kid may be in range. also i dont see the ranges for his results- so i cant say for sure- but in my amateur opinion- it looks like he's either weak positive or negative on the ttg (but they only tested his ttg IGA and not also his ttg IGG). and it looks like he is positive on the Antigliadin Igg, and either WEAK positive or negative on the AntiG IGA. so, to me it looks like he's definitely Gluten Intolerant. he could be celiac too- but a lower ttg MAY mean that he doesnt have enough detectable damage in his small intestine yet?? that's my guess.

and these medical people saying we shouldnt rush to make any "drastic" changes crack me up really- like it would be such an unhealthy thing to not follow the crappy food pyramid with large doses of wheat & dairy...

i think you should have him go gluten free... AND i think you should have you and his father properly tested, and any other siblings... maybe even consider gene testing thru enterolab... all of these pieces to the puzzle may better help you down the road- because one day your son may want more definitive answers- or maybe someone else in the family will get sick- it's good to get the whole picture you know- so you can prevent crappy side effects & secondary diseases that many of us have regrettably ended up with including Depression/Anxiety, Autoimmune Thyroid Diseases, etc, etc....

[Marlie]

I personally would not go Gluten Free until you test further especially if you can get it all done within the month and he isn't showing many symptoms. The reason being is your child is quite young and having a confirmed diagnosis is going to make things easier in terms of dealing with schools and other doctors. This would prevent any doubt down the road. Some individuals have 504C's (I think that is what it is called) for schools for accommodations under the american disability act but I would imagine getting one these would be easier with a confirmed diagnosis. Going Gluten Free prior to the testing will very likely effect the test results. You can easily go gluten free after you have finished testing no matter what the test results show.

My child's Total IgA was in the 60's which was in normal range but on the low side.

[raeskids]

We just went down this road with my 16month old. I didn't take him off gluten till after he had his biopsy. However, we ended up at the Children's Hospital because Samuel was so sick. Once in there, we ended up with a pediatric GI doctor immediately. We had a biopsy done within 2days of being discharged. Then Samuel ended up back in the hospital for 4days -- they believe it was celiac crisis.

Samuel had been off of wheat (not gluten) for about 3weeks in December because I suspected wheat allergy. Not celiac. However, that little bit of time skewed his biopsy slightly....so if you think you'll do a biopsy...I wouldn't eliminate gluten till afterwards.

Good luck!

[seezee]

We go to Children's Hospital Boston and they have been great. Be sure to get a GI doctor who specializes in celiac. We see Dr. Dascha Weir there and she is really nice. If the bloodwork is positive it's unlikely to be something else.