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dharmamomma

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About dharmamomma

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  1. Hi there! I'm so happy to find this forum! About 5 months ago we realized that that something just wasn't right with our now 20 month old. 2-3 hour crying spells, loose stools, headaches, joint pain, night waking, rashes and speech issues. For those first 15 months we thought her problems were due to natural childhood things: teething, roseola, pediatric diarrhea and so on. Our family practitioner was the first one to suggest food issues, but suggested we go to specialists to be sure. At the same time, I found out that family members had/have Celiac/food issues/liver problems/digestion issues. Our PCP suggested pulling gluten and dairy from her diet. We saw positive changes, but not enough for me to feel like our daughter was on the mend. I decided to pull eggs and soy from her diet as well. After a month of being gluten/dairy/egg/soy free we have seen a drastic change in her health and behavior. To me this is the most telling tale - but not to the medical profession. Luckily our PCP is on board with our path. Over the past 3 months we have been told that we are insane (after a visit to the ER with high liver levels and dehydration), that she has Autism or Cerebral Palsy and much more. We got her allergy tested but we were told, "oh, this isn't a sure thing, you can still be allergic to a food but not test positive. A food elimination diet is the best way to test food allergies." We have averaged 2 doctor's office visits a week for the last 4 weeks. Frustrating every one. Yesterday we finally had a chance to meet with a pediatric GI specialist. I told him our tale, and he listened nicely, but wanted to do a blood panel anyway (she has been gluten-free for over a month, so there is a really good chance she will be negative). So I ask him what his next step is if she does test negative. He told me that we would add gluten back into her diet and see how she reacts. I told him that we already did that, and she got sick again. He just looked at me and said, "well we will try again to see what happens." To his credit he did know that not all Celiac kids look the same. My daughter has no outward signs - growth is good, very chubby, and so on. It was the constant loose stool (during one of our many ER trips, we found out she was also constipated...all through her GI tract) and other issues that brought our primary doc to the diagnosis of Celiac. As I was looking on our doctor's notes for the lab, he diagnosed my daughter with Celiac, but still had her panels run. It was so frustrating to me to see this. Why didn't he just say, "sounds like it is all working out, let's just keep an eye on her as she grows"? Instead I had to take her in for more blood work and more tests? It is no joke when I say that she has been to the doctor more in her life than the rest of my other kids have been in theirs combined. I know this must seem like a total ramble, but I'm just so frustrated with the medical community and their lack of compassion and desire to help. "More tests, more blood work, sit in my office (we have been in doctor's offices for up to 5 hours before seeing a doctor), you don't know anything because I'm the doctor..." and so on. Thanks for reading...I just wanted to get that out. Also, I'd love to know how other parents deal with having a Celiac kiddo with the rest of the kids are not. Half of the family is Gluten-free Casein-free, while the other half is not. Do you turn your house/kitchen over to the gluten-free side of the family, in order to avoid contamination? Thanks! Peace, Kim
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