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Advice For My 5 Year Old

HappyMomma

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HappyMomma Newbie
HappyMomma
Posted

I just wanted to get some advice for my child. Quick history, when she was 18 months I started noticing her spitting up a lot. Around 2 1/2 years we finally saw a GI specialist , did many tests including endoscopy. Diagnosed with classic reflux, but none of the meds helped some made it worse. By the time she was 4 she was throwing up around 25 times a day, it wasn't full stomach contents but alot. We tried many elimination diets none helped until we did gluten-free. Within 5 days she was down to vomiting 4 times/day. We went back to GI he wanted to do another endoscopy to confirm, so we put her back on gluten for 6 weeks prior to the endoscopy. After the procedure she suffered huge complications from the biopsies and ended up at Children's Memorial for 2 weeks with a hematoma completely blocking her intestines. Now we are seeing another doctor did saliva and stool test and her Gliadin SIgA was at a 3 which is negative. Every doctor says it is not gluten causing the problems, she is structurally fine and we have done basic allergy testing and nothing there either. I would be fine with this diagnoses if she didn't show great improvement when on gluten free. I know everyone will say you do what works, and I know the diet is doable, but I don't want to be missing something else that it could possibly be. Any suggestions would be so greatly appreciated. Thanks

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mommida Enthusiast
mommida
Posted

I apologize to everyone for my Eosinophilic Esophagitus rants. :rolleyes:

My daughter was diagnosed with "probable" celiac when she was about 16 months. All was great on a gluten free diet until she was 5 1/2, right after Halloween. Then it seemed like she was having gluten reactions. Pain in the stomach, "D", vomitting up to 12 times a day with a lot of severe GERD symptoms, tired, headaches. She had even been vomitting blood when she had a virus with a fever.

She had to have another endoscopy with biopsy that actually had the lab test for eosinophils. The eosinophils can be embedded in "normal, healthy" looking tissue.

The diagnoses for EE is increasing. Air born or food "triggers" are believed to be stimulating the eosinophil production. Once activated eosinophils remain active for at least 12 days. For the ped. EE patient there are some patterns like usually the symptoms get worse during a seasonal allergy time of year. i.e. (fall hay fever) Allergy testing can show the child is not allergic to anything. (Good thing they do use a control. Nothing came up for my daughter. NOTHING.)

If you research EE, don't freak out! My daughter's is relatively under control for 2 years. It was hard at first to do an elimination diet. At one point she was gluten free all top 8 allergen free, and peas (to be safe we avoided all leguemes), and avoided food dyes. She is not on a feeding tube. We determined she needs to be gluten free, egg free, fish and shellfish free.)

HappyMomma Newbie
HappyMomma
Posted
  • Author

We have gotten two endoscopies done, the first when she was 2 1/2 was just to see if there was any structural damage, and I think they did biopsies of the esophagus as well as the intestines. The last endoscopy we had I know they took 12 biopsies of the intestines, but not sure of the esophagus. They always say there is irritation of the esophagus which I understand due to the vomiting. Do you think with the two endoscopies they would have found if she had eosinophilic esophagitis? I have never heard of it before, so I have never brought that up to the doctor. Thanks for the advice.

Staceyshoe Apprentice
Staceyshoe
Posted

EGID was the first thing that came to mind when I saw your post also. When I was researching the disorder, I found a Yahoo group that was FAR FAR more helpful than the vast majority of articles online. Like celiac disease, EGID doesn't always follow the stereotypical pattern of symptoms. While the esophagus is the most common location, eosinophils can be anywhere along the GI tract and cause problems. It might be worth doing some reading about it.

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