Jump to content
  • 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 Our Content
    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


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

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!

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.

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

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

    2. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    5. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    Ellen Palo
    Newest Member
    Ellen Palo
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.