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So Many Questions
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2 posts in this topic

I will try to keep this post from being very long but I also feel like everything stems off each other so that will be hard. I really need some help though please!

My 15 mos old was diagnosed several months ago as failure to thrive. We spent all summer doing many tests with a GI and did an endoscopy in July....GI was convinced she had Celiac. She is DQ8 positive but everything else including the endoscopy have come back negative. My DD was not gaining weight, has a very distended belly, and was pooping 4-7 times a day. After the endoscopy we decided to try a gluten free diet as the GI threw his hands up and didn't know what the problem was. He laughed at me when I suggested just trying a diet change (yes, we have fired him). He doesn't believe in just intolerances....it's either Celiac or nothing. She's been gluten and wheat free for 5 weeks now and at her 15 mos check up last week she had gained 2 pounds and grown 1 1/2 inches....huge growth for her! She also went from pooping 4-7 times a day to only 1-2 times. Ped was thrilled and said to keep her gluten free.

She had a seizure back in March (no answers why). She has had questionable seizure like behavior since (waiting on EEG results and is scheduled for a MRI). She was hospitalized 3 weeks ago because her blood sugars crashed to 43. Drs finally began to take me seriously after that. She was diagnosed with ketotic hypoglycemia. Endocrinologist doesn't know if it is caused because of an underlying issue of "Failure to Thrive" or something completely separately.

The last 2 weeks she has been giving me such a hard time eating ANYTHING. She used to have a huge appetite and would eat anything and everything (which also didn't make sense because she wasn't growing). I feel like removing gluten is definitely helping but I still feel like there's a problem. Here are my questions.....Is there such thing as just a gluten allergy/intolerance or does it mean she has Celiac? I have removed gluten/wheat but haven't gone strict with worrying about cross contamination or trace amounts in things.....can this be affecting her not wanting food at all? Her belly is still so distended...how long would this take to get better? Even things that used to be her favorites/treats she is fighting me on. I've heard that removing gluten can temporarily make people sensitive to dairy....could this be it? In the last week she has lost over a pound of the 2 pounds we worked so hard to gain :( Per the advice of the nutritionist we saw in the hospital she is also on Pediasure which I don't offer until I've spent a good deal of time trying to get her to eat solid foods.

I'm open to any suggestions or tips! We are in the process of getting a new GI now. I just don't know what to do. Obviously when she doesn't eat it also makes her blood sugars low which can't be happening.

TIA!

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There are a ton of issues which can cause failure to thrive in infants. I think you are doing an excellent job finding a new GI and working so hard to offer her solids before the Pediasure. There are some pretty strange allergies out there, aside from the eleven you hear about all the time, and its hard to diagnose allergies in infants (Corn, Oats, molds...etc.) . If you are waiting on test results for the EEG and an MRI my course of action would be the following; keep up the pediasure and offering solids, and pretend you are a nurse. Keep a chart/ notebook of her intake and her temperature three times a day. If blood sugar is an issue, start taking that as well. Sending you hugs and support.

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    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
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    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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