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

Glutenizing...


shaleen

Recommended Posts

shaleen Rookie

Not sure if that is what you would call it but I just got back from the GI doc who wants me to put my 18 month old back on gluten for 2 months before they'll do the endoscopy. I was wondering how I'm going to deal with all the ill side effects he gets for a whole 2 months!!! Any help would be appreciated...he usually gets diarrhea and mad rashes. Plus they are putting him on a antihistamine to increase his appetite!


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



Celiac.com Sponsor (A8-M):



Dixiebell Contributor

I would call it torture. Did your doc tell you to take him off gluten before the endo ? I bet if that doc was having problems, he wouldn't go back to eating gluten. Are you wanting the endo to see if maybe something else could be going on too? If not, if it was me having to make that decision, I would keep him gluten free. Keeping him gluten free will not mask other problems he might still be having or may have in the future. My son is 9 and we decided to try the diet instead of the endo because the tests can miss the damaged areas or there might not be enough damage to start with. His blood tests were negative too. Best wishes.

SGWhiskers Collaborator

I'm not a mamma yet, but I wouldn't put a developing child on gluten or through the endoscopy just for the label. Why did the doc say he/she wanted the endo done? Are they looking for confirmation, or suspicious of something more. Just because medicine CAN do something, does not mean that it SHOULD do it. With that said, there may be very good reasons for doing the test now.

MacieMay Explorer

Not sure if that is what you would call it but I just got back from the GI doc who wants me to put my 18 month old back on gluten for 2 months before they'll do the endoscopy. I was wondering how I'm going to deal with all the ill side effects he gets for a whole 2 months!!! Any help would be appreciated...he usually gets diarrhea and mad rashes. Plus they are putting him on a antihistamine to increase his appetite!

I feel your pain. I just went through it. It's heartbreaking to give your child something that you know could be causing them harm. But...if you think he has celiac then he has to be on the gluten for you to get the diagnosis. He is young and any damage done to his small intestine will surely heal and he will be OK. The antihistamine will help with rashes. It is very difficult to diagnosis kids under two because they have not consumed enough gluten to cause extensive damage or built up enough antibodies in the blood to show up in blood work. I believe my 18 mos daughter has DH, her rash is not responding to antihistamines, hydrocortisone, or moisturizer. It has all the typical characteristics of DH. A few weeks back she had a endo and a colon( to rule out hidden food allergies ) and everything has come back negative (including two celiac panels). I had her on and off the Gluten before hand, eventhough I knew for test purposes she should be on. But her skin was getting so bad, I just couldn't bare to see it.

Try to take it one day at a time. Down the road you will be thankful that you have a correct diagnosis. I hope this helps.

my3monkees Rookie

If you know your child reacts to gluten. I wouldn't put him thru 2 months of torture. He is too young to even understand why he feels so bad. My then 11 yr. old said she would starve herself before she would go back to eating gluten, so ped. and I agreed an official diagnoses wasn't necessary, it wasn't going to change anything. Official diagnosis or not, she can't eat gluten. As she gets older, if she wants an official diagnoses, she can make that decision. HTH Wish you well!

THernandez Newbie

Not sure if that is what you would call it but I just got back from the GI doc who wants me to put my 18 month old back on gluten for 2 months before they'll do the endoscopy. I was wondering how I'm going to deal with all the ill side effects he gets for a whole 2 months!!! Any help would be appreciated...he usually gets diarrhea and mad rashes. Plus they are putting him on a antihistamine to increase his appetite!

Yeah, you know what? They wanted me to do that with my son too and I said no freaking way! My kid was so sick when he was on gluten that I wasn't even going to consider it. Her reasoning was that without the biopsy (which in itself seemed like a tortuous thing to do to a toddler) I couldn't get a definitive diagnosis. My question to her was, if the gluten-free diet made every symptom go away, what good is a definitive diagnosis. She said, "So you can write off the difference in the price of gluten-free food off your taxes." Seriously, that was the best reason she could offer me to put my kid on gluten. I never went back to see the pediatric GI again.

As far as the antihistamine goes, it does the opposite to me, it decreases my appetite. That seems kind of odd to me.

shaleen Rookie

So yes, I think the pediatrician is deciding to call it a day with my little one. He has rashes covering his arms and legs...just 3 days after starting the gluten. He just started with an ear infection and has been smashing his head on anything and everything. If this continues, she said to discontinue the gluten on Thursday of this week. THanks for everyone's comments and help on my LO!


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



Celiac.com Sponsor (A8-M):



SGWhiskers Collaborator

Get him to a good dermatologist and have those rashes biopsied for DH. I think they have to do just outside or the edges of the rash. DH is as good as a celiac diagnosis. Go to the DH part of this forum and I suspect you will find the information you need. A little skin biopsy is nothing compared to 2 months of gluten and an intestinal biopsy. Consider the rash an easy way out of your dilemma. As a bonus, if it is DH, the rash will serve as a good motivator in the teenage years for staying gluten free.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748

    Betty Siebert
    Newest Member
    Betty Siebert
    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

    • Scott Adams
      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.