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suzyq63

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suzyq63 Apprentice
suzyq63
Posted

Hi. My 11-year-old daughter, Alison, is scheduled for an endoscopy and biopsy on July 3. She has had episodes of loose stools for some time now but had gotten worse this spring; the gas was horrendous. I took her to the gastro who ordered a celiac panel. The only test that came back positive was the antigliadin antibodies; they were 18. He ordered the gene test from Prometheus and we found out that she does carry one celiac gene. I don't know any more details yet other than that according to Prometheus she is "very high" risk for celiac. She was also diagnosed with Type 1 diabetes in January of this year. This is turning out to be a very challenging year!

Alison has also been losing weight - 3 pounds in the last two weeks for a total of 9 pounds since April. Thankfully she had a little extra weight on her but that's pretty much gone now.

It would sound strange to many people, but I'm sure you all will understand: I am actually hoping that the endoscopy gives her a diagnosis of celiac. If it doesn't, I think I still want to put her on a gluten-free diet. With the blood test results and the fact that Type 1 diabetes increases the risk of celiac, I hate to have her keep eating gluten until she gets worse. An official diagnosis would make it easier in one sense. On the other hand, I feel bad putting her on a gluten-free diet because she's already had to adjust to a new lifestyle recently. I think gluten-free will be harder for her.

Anyway, hello and I am sure I'll have plenty of questions!

Paula

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MELINE Enthusiast
MELINE
Posted

Hello and welcome to the forum.

Me too I hope you get an official diagnosis. It does sound strange, but we all know that getting a diagnosis is many times a relief. Generally speaking, a gluten-free diet has only benefits. Even if you are totally healthy, you have nothing to lose. In alison's case, I mean diabetes, a gluten-free diet may be helpful. I know it is hard to explain to a kid that pizza is a no no but there are so many alternatives. If the tests for celiac come back negative, then she may follow a gluten - light diet, not a completely gluten free. Just some ideas....

Any way I hope you soon have your results, and that she will feel better after going gluten-free. After all. soon she will be able to take her own decisions! Till then she has a caring mother.

Feel free to ask anything.

Meline

CeliacMom2008 Enthusiast
CeliacMom2008
Posted

Just wanted to chime in to say I hope the biopsy went well! Let us know if we can help in any way!

suzyq63 Apprentice
suzyq63
Posted
  • Author

Thanks for the well wishes. Alison's endoscopy went quickly and smoothly. The dr. did not see any visible damage so we'll have to wait for the biopsy results, which should be available Tuesday or Wednesday. He said he didn't want to put Alison on a gluten-free diet without a confirming biopsy since she already has to deal with the diabetes. I did tell him that I was seriously considering trying the diet anyway due to the fact that her intestinal issues are getting in the way of life more often now. In addition, she has lost another 3 pounds in the past two weeks for a total of 9 pounds since the end of April; she can't keep losing weight. She has also had a couple of episodes of her blood sugar going too low right after eating. The reason for blood sugar dropping like that is that she had insulin to "cover" her food intake but she didn't absorb the food so she had too much insulin which caused her blood sugar to drop (a fairly common reaction for a Type 1 diabetic with celiac). The dr. did seem to understand where I was coming from so I don't think he'll have any objections to giving the diet a try. It would still be easier if the biopsy confirms celiac, so that's what I'm hoping for.

I am sure I will have questions. I'm just waiting for those biopsy results and then it's off in search of gluten-free foods, a new toaster, a new frying pan, etc.

mouth Enthusiast
mouth
Posted
Hi. My 11-year-old daughter, Alison, is scheduled for an endoscopy and biopsy on July 3. She has had episodes of loose stools for some time now but had gotten worse this spring; the gas was horrendous. I took her to the gastro who ordered a celiac panel. The only test that came back positive was the antigliadin antibodies; they were 18. He ordered the gene test from Prometheus and we found out that she does carry one celiac gene. I don't know any more details yet other than that according to Prometheus she is "very high" risk for celiac. She was also diagnosed with Type 1 diabetes in January of this year. This is turning out to be a very challenging year!

Alison has also been losing weight - 3 pounds in the last two weeks for a total of 9 pounds since April. Thankfully she had a little extra weight on her but that's pretty much gone now.

It would sound strange to many people, but I'm sure you all will understand: I am actually hoping that the endoscopy gives her a diagnosis of celiac. If it doesn't, I think I still want to put her on a gluten-free diet. With the blood test results and the fact that Type 1 diabetes increases the risk of celiac, I hate to have her keep eating gluten until she gets worse. An official diagnosis would make it easier in one sense. On the other hand, I feel bad putting her on a gluten-free diet because she's already had to adjust to a new lifestyle recently. I think gluten-free will be harder for her.

Anyway, hello and I am sure I'll have plenty of questions!

Paula

Dear Paula

Oh my goodness. this has not been a good year for you.. I hope that u get the test results soon. I know we went thru hell my daughter had 3 endoscopies before she went from negative to the gray area,but her numbers were way up there so the pathologist had said go with the blood work.so we did. And boy are we glad.. she gained so much weight and grew so much and her health improved so drastically! So, yes you have it even harder.. but think of the benefits after the outcome!!!

WELCOME AND GOOD LUCK.. LET ME KNOW HOW TEST COMES OUT..

LYNN

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