Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Worriedtodeath

A Poll Of Sorts

Rate this topic

Recommended Posts

HI!!

Our 18 month old is considered to have Celiac even though her blood test was neg. After receiving the neg, we did food trials thru the allergist and discovered that she can not handle wheat. She will be removed from wheat with approval from her ped, ped gi, and allergist as it is causing diaherra, failure to thrive etc. The ped gi feels postive that she will have a positive biopsy but of course agreed that it could just as easily be neg as pos due to the nature of the biopsy.(which is making wonder if the biopsy is the gold standard because of how much "gold" is put in their pockets with such a test) Given our history of problems being knocked out, we are vary wary of the scope. So we were wondering how many with those under 2 who did a biopsy had it acutally turn out positive???

Thanks!!!

Share this post


Link to post
Share on other sites

Two of my dd's were diagnosed w/ Celiac under 2 yrs old. My older toddler was 16 months old. She only had a blood panel done. It was barely positive. I opted not to get the biopsy because I didn't want her to have to get an IV, and also because I was diagnosed w/ it. If I hadn't been diagnosed, we would have had the biopsy. My younger dd had the endoscope done at 14 months old. Her celiac tests were negative, but the dr did see ulcers in her tummy, and her siad she most likely had celiac and that is what caused the ulcers. She was just too young to have a positive test.

The actual "gold standard" is through a food elimination diet. Take her off all gluten for a while (say 2-3 months), and then do a challenge and see if she reacts. If she has a reaction, then you know she has a problem.

Keep us updated and welcome to the board!!

ptkds

Share this post


Link to post
Share on other sites

HI!

We only eat wheat around here so other than "hidden" gluten, taking out wheat elimanates it for us. After she was so sick in June, we fed her fruit/veggies and the improvement was like night and day. Thus we thought food allergy and when we gave her cheerios and pasta again took her for allergy testing when the bowels went crazy again. He said to do 3 week food trials of egg, diary, and wheat to rule out those three. She passed the first two but postivley without a shadow of a doubt cannot eat wheat. She is still on wheat since I knew that she had to be on it for Celiac testing. With all of our research, we are discovering that her age is a major factor in making the blood and biopsy neg or inconclusive. Our Gi didn't have "stats" on how many of his 2 and under patients had positive, neg, or inconclusive biopsy results. My husband doesn't see the need to do the biopsy since we will take her off of wheat and that 3 drs believe her to have "classic manifestation" of Celiac. So we were wondering if we could find just how many positive biopsy 2 year olds are out there. Quite frankly, the biospy for her age sounds like it is as unreliable as the blood panel and to take a test that will cost a ton of "gold" and possibly damage her beyond repair sounds wrong to us. While none of us have a Celiac diagonis, it has simply amazed me that when hearing other moms describe their biopsy proven older kids, they are describing my oldest children to a t. THey both stopped growing when we introduced "regular" food i.e. wheat loaded but neither of them had chronic constant diaherra jsut spells of it on and of like I have. They did grow very very slowly with my 5th grader now the size of an average 3rd grader. Their ped at the time said that kids settle into a new growth pattern and not to worry about it. We are just trying to see if the biopsy at this point in time is really worth the risk and cost. Or find out just how many go against the medical advise and refuse the biopsy.

Thanks

Stacie

Share this post


Link to post
Share on other sites

Obviously YOU know that feeding her gluten is not helping her so it sounds like she will go gluten-free regardless of what you decide re: biopsy--and that is a good thing.

A positive diagnosis from a doctor is nice, but a positive dietary response and a healthy child trumps that any day.

Share this post


Link to post
Share on other sites

hey there!

i had a positive biopsy at 18 months. I'm not sure what my parents would have choosen to do if there had been the option of a blood test, stool test, or a dietician who knew a lot about celiac at the time. but i have been gluten free since then.. :D

Share this post


Link to post
Share on other sites

well i have celiac disease my 6 yr old my 8 yr old my 3 yr old and my 1 yr old all have it and Megan has a appt with the stomach doctor monday as does my teen daughter, im going to have them both tested for it just to be safe, because the stomach doctor said that they can have it and not know it because they dont have any signs of it better be safe then sorry

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Member Statistics

    • Total Members
      86,787
    • Most Online
      4,125

    Newest Member
    OrangesAndMelons
    Joined
  • Forum Statistics

    • Total Topics
      112,058
    • Total Posts
      956,630
  • Who's Online (See full list)

  • Forum Discussions

    I recently started a medication that's known to cause hypothyroidism, and in me, it has. As I increased the dose, my TSH went higher, in an almost lockstep fashion. On the most recent set of blood tests, after my TSH had gone over the threshold, my GP decided to chuck a coeliac test in there since hypothyroidism can be linked to coeliac disease, even though it seems pretty much certain the hypothyroidism is caused by the medication. So essentially this test result was something neither he n
    TDZ, that is interesting that you mention weed-eating as coinciding with the start of your husband's rash, as about 12 years ago I had a possibly similar experience.  It was in the spring (meaning late May here in SC Alaska), and I was cutting the lawn.  Rather than bagging up all the lawn clippings, I would just take the filled bag off the mower, walk into the woods behind the house, and pull out the clippings with my hand and then scatter them around (so that they didn't just all rot and feste
Not a clue, other than normal eating. He ate a fair amount of bread, and pasta and pizza and such. Right before the massive outbreak in November, there was a peppermint/chocolate-drizzled popcorn that I got at Walmart, and it gave both of us horrible diarrhea, and within a few days he was covered with more rash than ever before. Might have been unrelated, but it's the only unusual thing that times out right for any causality. Otherwise, he wasn't eating anything different. The first thing t
  • Blog Entries

  • ×
    ×
    • Create New...