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

I'm New Here, Just Saying Hi

jmomee99

Recommended Posts

jmomee99 Rookie
jmomee99
Posted

Hi Everyone,

To make a long story short. My 7 yr old has always had constipation problems. His has autism and his diet was very limited and he never ate fruits and vegggies.

WHen he was 5 he was so constipated he did not go for 13 days. We brought him to the ER and the dr there told us about Miralax. This does help his constipation but as soon as we stop he is constipated again.

Now at 7yr I took him to a GI dr because I need to find out whats going on. The GI dr did blood work and it came back negitive for celiac disese so I thought great. I kept trying to find out what the problem was.

My next step I took him to an allergist and had him tested for food allergies. Well she tested all the main things he eats and the only one that came back with an allergy was wheat. I was confused. She explained to me that the gi testing for celiac is to test to see if he had the enzimes to break down the wheat, so he does. She said she test for an allergy to the food.

Anyway since there is many people with autistic children who are on a gluten free diet I thought it was a good idea to go gluten free and not just wheat free.

I have been reading your posts to try and learn and get some info. I read on 1 of the other boards that if the person has a small amount of gluten they are constipated for a week. I wonder if gluten is his issue.

Well any info or suggestions are appreciated.

Thanks!

Julie

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Welcome.

Many parents have found that a strict gluten- and casein-free diet is beneficial to children with autism. It does not cure the disease, but appears to make a significant difference in the severity of the symptoms.

The diet is challenging, but there is a huge amount of information here, and there are many experienced people to help with your questions.

dandelionmom Enthusiast
dandelionmom
Posted

Welcome! This forum is so very helpful! I'd be lost without it! I'm eager to hear how your son responds to the diet. Best wishes! :)

Darn210 Enthusiast
Darn210
Posted

Welcome Julie . . . any questions, just ask! If you would like to know the best replacements for your sons favorite foods, just give us a list of what he likes. I wasted a lot of money in the beginning trying foods that weren't that great. I should have just asked . . . what's the best kind of chicken nugget? . . . or whatever . . . and I would have gotten a better idea where to start in the beginning. Lots of people are gluten-free/cf here, not necessarily because of autism but because so many have issues with both. Ask away, we are here to help.

jmomee99 Rookie
jmomee99
Posted
  • Author
Hi Everyone,

To make a long story short. My 7 yr old has always had constipation problems. His has autism and his diet was very limited and he never ate fruits and vegggies.

WHen he was 5 he was so constipated he did not go for 13 days. We brought him to the ER and the dr there told us about Miralax. This does help his constipation but as soon as we stop he is constipated again.

Now at 7yr I took him to a GI dr because I need to find out whats going on. The GI dr did blood work and it came back negitive for celiac disese so I thought great. I kept trying to find out what the problem was.

My next step I took him to an allergist and had him tested for food allergies. Well she tested all the main things he eats and the only one that came back with an allergy was wheat. I was confused. She explained to me that the gi testing for celiac is to test to see if he had the enzimes to break down the wheat, so he does. She said she test for an allergy to the food.

Anyway since there is many people with autistic children who are on a gluten free diet I thought it was a good idea to go gluten free and not just wheat free.

I have been reading your posts to try and learn and get some info. I read on 1 of the other boards that if the person has a small amount of gluten they are constipated for a week. I wonder if gluten is his issue.

Well any info or suggestions are appreciated.

Thanks!

Julie

Thanks for all the info. I am basicly checking the ingrediants for wheat rye barley triticale spelt kamut mir farina. The companies that I have called so far say that if their products contain gluten it would be in one of these words.

I am trying to find regular foods that do not have gluten. I have found bologna and bacon that are gluten free. He likes choclate pudding, icing for cake. he likes pizza but I have not found a replacement yet that he likes. any info would be helpful for regular things to buy for kids in a regular food store.

Cheri A Contributor
Cheri A
Posted

Welcome to the boards. My daughter's celiac testing was inconclusive, but she is allergic to wheat. We decided to go gluten-free anyway, because I didn't want to put her through the scope.

For us, I fed her mostly meat, veggies, and fruit at the beginning. Others will have to help you with the store-bought brands, because the only things I really buy are Glutino pretzels and Tinkyada pasta.

I'll be interested to hear how he does on the diet too!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,671
    • Most Online (within 30 mins)
      7,748
    Paul1567
    Newest Member
    Paul1567
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      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
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      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
      Inconclusive results

      By Scott Adams · Posted

      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.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.