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Hi! New With Questions

Virgie

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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

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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:

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