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Please Help! I Need Some Expert Opinions.

pinkdljj

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pinkdljj Rookie
pinkdljj
Posted

My daughter, Julia, had diarrhea when she was 14 months old for 7 weeks. I finally figured out it was the gluten. I have celiac disease myself and it took me 10 years to finally diagnose it after being sick for way too long. Once I stopped her gluten and had enterolab test her stools, her diarrhea stopped. Her enterolab tests revealed she has antibodies against gluten and has 1 celiac gene and 1 gluten sensitivity gene.

Now she has been off gluten for 8 months. She has been accidentally gluttened and she vomited and had diarrhea within the first 24 hours.

This last weekend I found her in the bathtub with ritz crackers while we were on vacation. I was waiting for the diarrhea and vomiting, but nothing happened. So I was confused so I gave her a chocolate chip cookie at the grocery store the next day. Still nothing. Then I gave her a graham cracker and nothing. What is going on? Did the sensitivity leave? I don't know what to do. She loves the gluten, of course, but is it really hurting her in ways I can't see? After convincing her doc she had a sensitivity and now this, it is strange.

Please, if anyone has experienced with this it would help me understand. What is the best thing to do for her? Do I treat her as if it is poison or let her have some? Any help would be much appreciated.

I want her to live a normal "child" life, but I'm determined to not let her get sick from gluten.

Thanks for any input. This whole thing is very confusing. The ped's tests all came back negative for celiac and gluten allergies but enterolab came back positive.

Leslie

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Ridgewalker Contributor
Ridgewalker
Posted

I know how confusing it is. I've been there, and I still go through it. But you've got to stop giving her the gluteny food. You know she is gluten intolerant. Let me sum up what you just wrote:

-Your daughter had diarrhea for 7 weeks, and it stopped when you took her off gluten.

-Her mother has Celiac, which is more hereditary than doctors will have you believe.

-She has a Celiac gene and a gluten intolerance gene.

-Her gluten intolerance was confirmed when she was accidentally glutened, which gave her GI illnesses.

The sensitivity didn't leave. Unless it was caused by another underlying disease, the intolerance/Celiac can't leave. What's happening right now is confusing, I know, but some people's bodies apparently heal enough that they don't have a VISIBLE reaction every time they get glutened. But damage can still occur on the inside.

Other people keep the strong reaction their whole lives... it's so individualized.

If you keep feeding her gluteny foods, though, she's going to get sick eventually.

slmprofesseur Apprentice
slmprofesseur
Posted

The gluten could affect her growth long term, motor skills, and behavior. Is it worth the risk?

Lockheed Apprentice
Lockheed
Posted

I know I got celiac disease from my mom's side of the family.. at 5'2" I'm the tallest female even though my dad is 6'3" after having had polio as a kid. I shouldn't be this short. And if you tell me it's not the celiac's disease I'll point out that at 20 I was diagnosed with osteoporosis because no one thought to check my complaints and they kept on feeding me wheat anyways. Just because she's not having outward signs or symptoms doesn't mean that there isn't internal damage being done. Not to mention that sensitivities are more a dosage response issue. A smaller dose triggers a smaller response but frequent small doses lead up to a large dose in the system and an inevitable large response. So low gluten is not even an option.

pinkdljj Rookie
pinkdljj
Posted
  • Author

Thanks everyone for the advice. It's sometimes hard to do the right thing when there are no outward symptoms, but I know that keeping her gluten free is the very best for her. I didn't have symptoms until I was really sick. If I can prevent that from happening to her than it is my responsibility as her mom.

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