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 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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,197
    • Most Online (within 30 mins)
      7,748
    Seeeye
    Newest Member
    Seeeye
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…                 
    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Fayeb23
      Waiting Gastroenterology review

      By Fayeb23 · Posted

      I’ve recently had bloods test due to fatigue. Iron was found to be low Serum ferritin level 4 ug/L so doctor sent for Coeliac test. Results have come back TTG ABS NUMERICAL > 250.0 U/mL is this a high reading? Am not waiting a Gastroenterology referral but this could take 10 weeks! This is all total new to me, didn’t think for a second I would have coeliac disease. Been advised not to change diet until seen by specialist 
×
×
  • Create New...