Advice For 1St Doctor Visit?

[MikkiB]

Hello, I am new here after finding this site on a web search. We are taking my 5 year old son to his pediatrician next week with the suspicion that he has celiac disease, and I'm hoping that 'those who have been there' can give some advice on how to talk to our doctor about his symptoms, any tests to ask for or avoid, etc.

Without giving his entire life history, he's a fraternal twin who presented as premature while his twin was born healthy (they were both 19" and 6.4 lbs at 36 weeks, born by c-section). After 8 days in NICU for lung treatments, he's been healthy but had 'silent reflux' as a baby and was always fussy/colicky. From age 2 months-4 years he's been on a 50th height and 25th weight percentile while eating twice as much as his robust twin. Both of them have been extremely healthy (not even ear infections), although the typical viral infections present in Ryan with much higher fevers than in my other kids.

In the past several months he has just stopped growing. He's been falling behind even more in height and not gained any weight - now at 5.5 years old he is 43" and 33.8 lbs (BMI in bottom 1% for his age), even though he complains of always being hungry. He also has a history of tiring easily when walking (although frankly, until recently I thought he just *liked* being carried!), gets dark circles under his eyes. He doesn't have diarrhea (although back in the diaper days and when he still needed help on the toilet we were amazed that such BIG poops could have fit inside his itty-bitty abdomen!) and doesn't get upset tummy or vomit except when ill.

Once we realized that he wasn't gaining weight or growing as much as expected, we started watching his intake and it seems that if he eats bread/starches, he eats very little before saying that he's full, but is starving 30 min-2 hrs later. If we give him high protein/high fat meals with no starches, he eats much more and stays satisfied much longer. I've also recently realized that I'm gluten-sensitive, and there are several type I diabetics in my family.

From my research so far, his symptoms match mild celiac disease so we set up a doctor appointment for next Friday. However, since there is so much out there about how celiac disease is under-diagnosed etc, what should I ask for? I'm still letting him eat bread and such for now, since going gluten-free could throw off any testing ... other than that I'm at a loss!

Thanks so much!

Mikki

[buffettbride]

Here's my two cents:

1. Make sure he keeps eating gluten throughout the entire diagnosis process.

2. There's no such thing as "mild" celiac. You either have it or you don't (not to say there's no such thing as gluten intolerance). What I am meaning to say is, any diagnosis of Celiac means following the gluten-free diet for life.

3. I forget the exact blood tests (hopefully someone will post them here), but there is a whole series of blood tests to request in association with preliminary Celiac diagnosis.

4. Ask the pediatrician if he/she has ever treated a patient with Celiac disease and how familiar they are with it. This is very important because honestly, not many general medical professionals seem to have it on their radar.

5. Find a good pediatric GI specialist. That is the person who is more likely to know about Celiac in children than anyone else. We would have been lost (and were lost for about 3 years of stomach aches) without him.

6. Don't pigeon-hole yourself into thinking it's Celiac. Sure, some symptoms are there, but keep an open mind that there may be other issues going on as well.

I wish you the best in your son's diagnosis and hope you find a healthful way to make him feel better.

[mushroom]

I agree with the previous poster that probably the most important thing in diagnosis is finding a doctor who is familiar with celiac disease and its manifestations. This is a disease that flies under the radar of a good percentage of medical professionals, although they do seem to be more willing to consider it in children than in adults because the "failure to thrive" syndrome is one manifestation of celiac disease they have been taught in medical school.

The tests in the celiac panel consist of the traditional of

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

plus the newly developed deaminated gluten peptide (DGP) which shows promise of being more effective than the others.

The diarrhea/constipation/stomach pain symptoms are but one manifestation of celiac disease; many people do have these. Often people are surprised when they are diagnosed because the diagnosis is incidental to other problems they were having which they did not relate to celiac - they were lucky enough to have a thorough doctor who thought to test them for it. Can you talk to the doctor's nurse and find out if he is used to diagnosing celiac disease or has ever diagnosed celiac disease?

And you should think of getting yourself tested, too, especially if your son's testing is positive.

You are correct to have him keep eating gluten right up to the time that all testing is complete.

Good luck and hopefully you will find the answers for your little guy.

[MikkiB]

Thanks ladies! I do hope the tests come back negative, because celiac disease is no fun ... but better to know sooner than later!

Mikki