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Two Sick Kids And No Diagnosis

fripp017

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fripp017 Apprentice
fripp017
Posted

So, after being diagnosed with Celiac I noticed my children had similar symptoms. So, I had blood work done on them. The blood test had some higher levels of antibodies, so they were both refered to a pediatric GI specialist at Yale Hospital. I kinda thought that since they would be going to a specialist for children, at a well funded medical facility that the doctors would know more of what was going on with the whole gluten thing. When my children went to meet the doctor he said the anitbodies were "non-specific." However, these are the same blood results that got them the referal. Because I was Celiac, he chose to do endoscopies on both of them. When I met with the doctor the day of the edoscopy I asked him if he had read the book Healthier Without Wheat. He said no!! The doctor didn't even seem to have any concept of gluten intolerance or "non-Celiac" responses to gluten!! Shouldn't a doctor have to so research too!?! My 2-year-old daughter went in first. It was a heart wrenching experience to see her go under general anesthia, but I thought it would help her in the long run. When it was done, the doctor said her intestine looked okay and she didn't have Celiac (since he doesn't know of any other possibilities). Then went my 4-year-old son. The doctor said that his intestine looked "perfect" but he had a "non-specific" rash on his stomach. He even showed me the pictures. He also declared that my son did not have Celiac. I TOLD him that I was switching them onto the diet when I returned from the hospital. He gave me a confused look and continued to go over post-endoscopy instructions.

My first complaint is - Why don't doctors keep up with research?? As soon as they are done training, they are done learning?? Don't lawyers have to learn new laws? Don't teachers have to teach new history and theories? Don't scientists have to learn new methods? UGH!! Do alittle more studying! I'm not saying that the research is where the answer right now, but at least know what is going on and have an opinion on it! My children actually started showing AMAZING improvements on the diet within the first week! I just wish they had a real diagnosis for school and outings. It's hard to explain to people why they can't eat that way for "no reason."

My second complaint is - Why can't my son's stomach rash be Celiac Disease? In Crohn's, people have a "normal" area in which they have inflamation. I believe it is the colon and lower part of the large intestine. I have read that some people with Crohn's actually have inflamtion in their esophagus and stomach. Why isn't it a possibility that some people with Celiac's may have their stomach attacked instead or in conjuction with the intestine?

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balmerhon Rookie
balmerhon
Posted

Did he take biopsies? That's the only way to 'see' if there is celiac damage - under a microscope!

Even then, false positives are common in the under 5s.

If you look at some of my previous posts, you'll see my son had negative blood work and biopsies. But they did find allergy cells. So right now we're looking at allergies. But if nothing pans out there, we'll go back to suspecting gluten.

As for the doc, I'm a bit speechless, but I'm fortunate to have my son at one of the best dept's in the country so I've not encountered that. Still, Yale ought to be much better than that!

NYCCeliacMom Apprentice
NYCCeliacMom
Posted

That doctor sounds kind of like the ignorant one I saw 4 years before my celiac diagnosis...did an endoscopy but didn't do biopsies because he felt I "didn't fit the profile" of a celiac. If you are near New Haven, I would suggest a consultation with a pediatrician at the Celiac Center at Columbia at W. 168th St in Manhattan. My teenager sees Dr. Amy DeFelice and I think highly of her, but the other doctors there are all good. The fact is, if you have celiac, your children have the genes. They need to be monitored carefully. Also, damage to the vilii may show up visually but the small intestine is long and if the damage is patchy, it might well be missed. Bloodwork is also not perfect. It can matter a lot which lab does the tests. That is why some people send their bloodwork to Prometheus Lab in CA (some hospital labs here send their samples there). You need medical care where the doctor is listening to you.

tifftonea Newbie
tifftonea
Posted

My 3 year old daughter just had her endoscopy done at Yale on Aug 18th. They did the biopsies and got the results back yesterday. Balmerhon is right, the only way to confirm Celiac is to take a biopsy. It dosen't make sence if they didn't take the biopsy. They're already there doing the endoscopy they might as well do the biopsy. Do you mind me asking who your doctor at Yale was? Just curious if it's the some one we had. Good luck with your kids!

DanAbimytwomiracles Newbie
DanAbimytwomiracles
Posted

If a child shows improvement on a gluten-free diet, there is no other proof needed IMHO. I chose to not put my DD under anesthesia and instead did an elimination diet, which CLEARLY showed gluten intolerance both in the elimination portion and the challenge portion. I dearly wish more GI doctors and peds would accept an elimination diet as proof.

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