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

Need Information Quickly Please!

Noni

By Noni
in Coping with Celiac Disease

Recommended Posts

Noni Rookie
Noni
Posted

To all the wonderful people I've met on this awesome site!

Since joining, you've all been so supportive and helpful to me that I'm coming to you today for help again. Here's the situation:

I have a 4 y/o niece who has suffered with stomach issues since birth. These problems have become severe. We took her to a large children's hospital this week where they ran blood work on her, an a stool specimen. The specialist just contacted my sister to inform her that the blood work was extrememly abnormal; says it shows Celiac Disease.

However, he still wants my niece to have an endoscope. The doctor claims the blood test is without doubt. I have no clue about how the accuracy of the blood test. We don't see why she should have to endure this invasive procedure. She's been traumatized enough.

Another main question for you: How can I send a link to my sister so that she can join this website to get help on the "Gluten-free Diet". I don't know how to do that. Would someone please respond quickly so that she can be helped also? Thank you in advance.

Noni

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Here is the link to the main forum page:

https://www.celiac.com/gluten-free/

Skylark Collaborator
Skylark
Posted

There is also great information on the main site. Send her to https://www.celiac.com/. Right in the middle of the front page, there is a series of links on the gluten-free diet.

As for the endoscopy, your sister needs to find out whether the doctor will positively diagnose celiac disease without it. Your niece will likely need doctors notes for school, especially if her celiac is severe enough to have positive bloodwork that young. If she was positive on anti-endomysial IgA or anti-deamidated gliadin peptide, she is almost certainly celiac as those two tests are about 98% accurate. Some doctors still want the "gold standard" of a positive biopsy, and they also want to get an idea of how bad the damage actually is. Bloodwork and villous damage are not very well correlated. If the result was anti-TTG (tissue-transglutaminase) she does need the endoscopy to rule out other problems because that test is less specific. Also, endoscopy isn't just for celiac. Your sister can talk to the GI doctor and see if he has a suspicion of any other GI problems and his clinical experience is suggesting he should have a look.

Celiac is genetic, so your sister and her husband need to be tested.

Noni Rookie
Noni
Posted
  • Author

Here is the link to the main forum page:

https://www.celiac.com/gluten-free/

'

Thank you so very much!!!! I appreciate it more than you

could know. She will be so happy. Noni :D

Noni Rookie
Noni
Posted
  • Author

There is also great information on the main site. Send her to https://www.celiac.com/. Right in the middle of the front page, there is a series of links on the gluten-free diet.

As for the endoscopy, your sister needs to find out whether the doctor will positively diagnose celiac disease without it. Your niece will likely need doctors notes for school, especially if her celiac is severe enough to have positive bloodwork that young. If she was positive on anti-endomysial IgA or anti-deamidated gliadin peptide, she is almost certainly celiac as those two tests are about 98% accurate. Some doctors still want the "gold standard" of a positive biopsy, and they also want to get an idea of how bad the damage actually is. Bloodwork and villous damage are not very well correlated. If the result was anti-TTG (tissue-transglutaminase) she does need the endoscopy to rule out other problems because that test is less specific. Also, endoscopy isn't just for celiac. Your sister can talk to the GI doctor and see if he has a suspicion of any other GI problems and his clinical experience is suggesting he should have a look.

Celiac is genetic, so your sister and her husband need to be tested.

Thank you so much! I have Celiac Disease myself. Could Hannah (my niece), have got it from me? I also have Crohn's Disease. My feelings about the endoscope are that the doctor only wants to do it because he is a "Gerd" specialist. The blood test he ran was the 2 you named. He stated they were extremely high results. His words were: very abnormal for a child her age. My concern with getting the diagnosis in writing without the endoscope is great, as he has a strange personality. When we took her in, she had been vomiting for 10 days straight.....he did nothing, offered no remedy. She also has had either loose green stool or diarehha. I wasn't impressed with him. Hannah cries daily that her belly hurts.

I've tried for a while to get my sister to start her on a gluten-free diet, as Hannah has Asperger's Syndrom. It took the trauma of the ER visit and the doctors visit w/ blood work to get her attention, sad! I'm Hannah's support system right now. Thanks for writing, please keep in touch. Noni

curiousgirl Contributor
curiousgirl
Posted

Thank you so much! I have Celiac Disease myself. Could Hannah (my niece), have got it from me? I also have Crohn's Disease. My feelings about the endoscope are that the doctor only wants to do it because he is a "Gerd" specialist. The blood test he ran was the 2 you named. He stated they were extremely high results. His words were: very abnormal for a child her age. My concern with getting the diagnosis in writing without the endoscope is great, as he has a strange personality. When we took her in, she had been vomiting for 10 days straight.....he did nothing, offered no remedy. She also has had either loose green stool or diarehha. I wasn't impressed with him. Hannah cries daily that her belly hurts.

I've tried for a while to get my sister to start her on a gluten-free diet, as Hannah has Asperger's Syndrom. It took the trauma of the ER visit and the doctors visit w/ blood work to get her attention, sad! I'm Hannah's support system right now. Thanks for writing, please keep in touch. Noni

Hopefully, Mom will take the same interest as Auntie! (learn how to pronounce those big words and what they mean)

cassP Contributor
cassP
Posted

Thank you so much! I have Celiac Disease myself. Could Hannah (my niece), have got it from me? I also have Crohn's Disease.

your neice didnt get it from you- but she recieved genes from your sister.. and possibly her father too. the genes are obviously in your family- and your sister is either a celiac too- or just carrying one or more genes.

i have celiac, i got 2 DQ8s- one from BOTH my mom & dad. im trying to get them tested. MY AUNT on my mom's side was just diagnosed with Crohns.. i wrote her a LENGTHLY letter explaining the genetics- and that her GI should test her for Celiac- and she never replied :(

i hope your neice gets on the diet, and i hope her parents get tested too. good luck :)

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

Thank you so much! I have Celiac Disease myself. Could Hannah (my niece), have got it from me? I also have Crohn's Disease. My feelings about the endoscope are that the doctor only wants to do it because he is a "Gerd" specialist. The blood test he ran was the 2 you named. He stated they were extremely high results. His words were: very abnormal for a child her age. My concern with getting the diagnosis in writing without the endoscope is great, as he has a strange personality. When we took her in, she had been vomiting for 10 days straight.....he did nothing, offered no remedy. She also has had either loose green stool or diarehha. I wasn't impressed with him. Hannah cries daily that her belly hurts.

I've tried for a while to get my sister to start her on a gluten-free diet, as Hannah has Asperger's Syndrom. It took the trauma of the ER visit and the doctors visit w/ blood work to get her attention, sad! I'm Hannah's support system right now. Thanks for writing, please keep in touch. Noni

Hannah couldn't have gotten the celiac gene from you because she is not your child. It means your sister is probably also carrying the genes and needs to be tested. Your parents should be tested as well.

Hannah almost certainly has celiac if both those tests were high. If your sister doesn't want Hannah to have the endoscopy, she needs to talk to the doctor about getting a diagnosis without it for school. Also, gluten free might help her Asperger's and your sister should consider casein-free as well. A lot of autistic kids do better off both.

  • 2 weeks later...
Noni Rookie
Noni
Posted
  • Author

Hannah couldn't have gotten the celiac gene from you because she is not your child. It means your sister is probably also carrying the genes and needs to be tested. Your parents should be tested as well.

Hannah almost certainly has celiac if both those tests were high. If your sister doesn't want Hannah to have the endoscopy, she needs to talk to the doctor about getting a diagnosis without it for school. Also, gluten free might help her Asperger's and your sister should consider casein-free as well. A lot of autistic kids do better off both.

Thanks so much for all the advice. I truly appreciate it. Will definately find a way to pass the info on.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    Jane02
    Newest Member
    Jane02
    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
      Unexpected gluten exposure risk from cultivated mushrooms

      By trents · Posted

      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
      Unexpected gluten exposure risk from cultivated mushrooms

      By Matthias · Posted

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

      By trents · Posted

      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
      IBS-D vs Celiac

      By Scott Adams · Posted

      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
      Question

      By Scott Adams · Posted

      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.