Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

New Here


suzyq63

Recommended Posts

suzyq63 Apprentice

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

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



MELINE Enthusiast

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

Link to comment
Share on other sites
CeliacMom2008 Enthusiast

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

Link to comment
Share on other sites
suzyq63 Apprentice

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.

Link to comment
Share on other sites
mouth Enthusiast
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

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

    2. - trents replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

    3. - mishyj replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

    4. - mishyj posted a topic in Coping with Celiac Disease
      3

      Why?

    5. - cristiana replied to Aussienae's topic in Coping with Celiac Disease
      64

      Constant low back, abdominal and pelvic pain!


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,216
    • Most Online (within 30 mins)
      7,748

    William day
    Newest Member
    William day
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      "her stool study showed she had extreme reactions to everything achievement on it long course of microbials to treat that." The wording of this part of the sentence does not make any sense at all. I don't mean to insult you, but is English your first language? This part of the sentence sounds like it was generated by translation software.
    • trents
      What kind of stool test was done? Can you be more specific? 
    • mishyj
      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
    • mishyj
      My daughter has celiac disease and has had for a long time. She fell loses strictly gluten-free diet and recently got rid of all cutting boards in any gluten in her house at all. She just had a stool test and it came back showing of gigantic response to gluten in her diet. What could be going on since she doesn't eat any gluten and is very careful about any kind of hidden glue? Help!
    • cristiana
      I think sometimes the pain described here can be a result of a sort of 'perfect storm' of contributing factors.  Recently I had an appalling bout of lower back pain, lower burning gut pain and what felt like cramps.  I then started to think about what could have caused it and I realised it was several things that had set it off: I'd been carrying heavy luggage (back strain); I had been sitting down in a car for too long and wearing a tight belt (I have pudendal nerve issues and sacroiliac issues and this exacerbates the pain), and I had bloating and burning pain in my colon caused by eating too much soy, latte and caffeine, I guess putting further pressure in the lower abdomen.  I had this same pain prior to my diagnosis and a couple of years post-diagnosis, I'd quite forgotten how unpleasant it was. 
×
×
  • Create New...