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

Hi! New With Questions

Virgie

Recommended Posts

Virgie Apprentice
Virgie
Posted

Hi! I'm new here. On my daughters 13th birthday the nurse called and told me that the lab results were in and that she tested positive for Celiac. Not quite the present she wanted to get :( !! My son already sees a PEDGI at Mayo so they recommended that we call Mayo to make an appt. So I did and she will have an endoscopy done in August. My son also has EE (Eosinophilic Esophagitis) so I wonder if they will test for that too?? Do any of you "experienced" Moms have any words of wisdom or advice for me in regards to what I should ask at her appt.?? We've been doctoring for 3 years with my son who also has an Inflammatory Bowel Disease so I now understand that disease but Celiac is something different to learn about. So anything you can tell me I will appreciate it very much.

Thanks. B)

Stay Cool!!

Virgie

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

Celiac.com Sponsor (A8-M):


Guest j_mommy
Guest j_mommy
Posted

Hi and WELCOME!!!!

Are you going to go gluten-free for the entire house or just for you daughter????

Books: Living Gluten Free for Dummie by Dana Korn & Celiac Disease:A Hidden Epidemic by Peter Green.....both great books. gluten-free for Dummies is humerous and easy to read with some great starter recipes. THe Dr. Green book is technical but TONS of great info!

New: Toaster, pans if they have scratches, wooden utensils, plastic utensils if they have sratches, colander if plastic.

Cross Contamination is hard, so beware.

READ LABELS....there is a great forbidden food list on this site(that I still take shopping with me) Here's the link:

https://www.celiac.com/st_prod.html?p_prodi...-40107303998.17

Always call/email companies if you're not sure of an ingredient.

i'm sure others will add more!!!

Welcome again!

Jess

Virgie Apprentice
Virgie
Posted
  • Author

Thanks so much for the info. I am especially concerned with the school lunches. I'm sure that I will be sending lunch most of the time. This was very unexpected but probably a better diagnosis than my sons Inflammatory Bowel Disease. At least she won't have to take 18 pills a day.

Thanks again for the info. I will check out that link.

Virgie

Hi and WELCOME!!!!

Are you going to go gluten-free for the entire house or just for you daughter????

Books: Living Gluten Free for Dummie by Dana Korn & Celiac Disease:A Hidden Epidemic by Peter Green.....both great books. gluten-free for Dummies is humerous and easy to read with some great starter recipes. THe Dr. Green book is technical but TONS of great info!

New: Toaster, pans if they have scratches, wooden utensils, plastic utensils if they have sratches, colander if plastic.

Cross Contamination is hard, so beware.

READ LABELS....there is a great forbidden food list on this site(that I still take shopping with me) Here's the link:

https://www.celiac.com/st_prod.html?p_prodi...-40107303998.17

Always call/email companies if you're not sure of an ingredient.

i'm sure others will add more!!!

Welcome again!

Jess

Electra375 Newbie
Electra375
Posted

Remain on gluten until the biospy, lots of it, especially in smaller children as they heal quickly and begin healing between meals of gluten.

Are they sure your son's IBS is not Celiacs? Or possible Gluten Intolerance? I always wonder about that now that I know about celiac disease.

Virgie Apprentice
Virgie
Posted
  • Author

Unfortunately he definitely does have an IBD :( !!! He has had 4 colonoscopies which showed Ulcerative Colitis throughout his entire colon. He did have the blood test for Celiac first and he was negative. It still would probably not hurt him to go gluten free though.

I'm glad that you said that about eating gluten before the test as my hubby thinks I am nuts to keep letting her eat gluten. But I thought the same thing. I don't want it to show up wrong after going through the test.

Thanks.

Virgie

Remain on gluten until the biospy, lots of it, especially in smaller children as they heal quickly and begin healing between meals of gluten.

Are they sure your son's IBS is not Celiacs? Or possible Gluten Intolerance? I always wonder about that now that I know about celiac disease.

Guest lorlyn
Guest lorlyn
Posted

Just make sure before the biopsy that you realize that if it turns up positive she will have it on her medical records for life, which could mean being turned down for health and life insurance in the future. I wish I would not let my 10 year old daughter have the biopsy because she is now labled for life. It is just something else to think about. The up side of being tested positive it will help if she misses alot of school because it falls under the ADA. Good luck and I hope everyone feels well soon :rolleyes:

Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      4

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

      Researchers are working on T cell modification therapy that could one day let celiacs eat gluten.
    2. chrisinpa
      - chrisinpa commented on Scott Adams's article in Additional Concerns
      4

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

      It's like a double edged sword.......we do one thing to improve a problem and cause another problem. I'd like to think the ultimate cure might be something that would train or modify the body to prevent the damage that gluten causes.
    3. Flash1970
      - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

      You might try Heallix. It's a silver solution with fulvic acid. I just put the solution on with a cotton ball. It seemed to stop the nerve pain. Again, not in your eyes or ears. Go to heallix.com to read more about it and decide for yourself Also, I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out...
    4. trents
      - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being...
    5. Roses8721
      - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,501
    • Most Online (within 30 mins)
      7,748
    MarisaMR
    Newest Member
    MarisaMR
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Flash1970
      Shingles - Could It Be Related to Gluten/ Celiac

      By Flash1970 · Posted

      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      Help

      By Scott Adams · Posted

      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • 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.