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:
    Help Celiac.com:
    eNewsletter
    Donate

inver

Recommended Posts

inver Apprentice

My daughter (age 12) was diagnosed 5 years ago as a celiac.  Five years on a gluten free diet and she continues to have reactions, severe stomach aches, constipation.  The past few months have been really bad.  Eliminating dairy and a lot of processed gluten-free foods have helped a lot.  Sticking to whole foods helps.  However, she is still reacting to something .  Our house is gluten-free so not cross contamination.  Has anyone tried food sensitivity testing, like the ALCAT test?  Was it helpful?  Do you feel you got accurate results?   Did insurance pay for it?  Who prescribed the test? We're going crazy with the elimination diet, it is just too hard...also I feel that she eats some foods and doesn't react for a few days.  Impossible to figure out!  She has had all conventional testing and allergy testing....everything negative.

Thank you!!!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Lucas Newbie

Hi!

I used to have the same problem as well. I would recommend a simple blood test that can be done by an allergist. This will show if your daughter has a true allergy to other foods. If she just has an intolerance, it may not appear. I have allergies to gluten, corn, soy, peanuts, and shellfish. Going gluten free did not fix my issues, which is why I needed the blood test. If you do not want to get the blood test, I would recommend cutting these foods out of your daughter's diet. I will say it is very hard at first, but it is definitely worth a shot. Corn is not a "top allergen" in the U.S. so it does not need to be listen on labels under "Contains". Soy and peanuts will be listed however. 

I hope this helps! It worked for me and I went from having years of stomach issues to finally feeling like a normal human being. I wanted to share my story in hopes that it helps your daughter.

Link to comment
Share on other sites
tessa25 Rising Star

Has she had a repeat of the blood testing for celiac? Have the numbers gone down? If she hasn't had a repeat blood test perhaps she should so that you could see if she still getting gluten. If her blood tests are normal perhaps her doctors could check her for other issues. If her blood tests are high then she could be getting gluten from somewhere like school or at her friends house

Link to comment
Share on other sites
Ennis-TX Grand Master

 

Try the blood test for the gluten antibodies as mentioned above first to make sure there is no gluten sneaking in.

Might try extending the elimination diet trial runs by a few days. ALSO random thought, I personally sometimes get a flare up from eating a food that did not bother me for days and it bothers my UC just randomly. And I have to remove it and any kind of spice for a few days then I am fine eating them again once it calms down and the inflammation goes down. Along this line she might be reacting at seemingly random to a spice or ingredient just at certain times. If she has damaged intestines it is not uncommon to react to spice, or certain high histamine or acidic foods at first, Hate to say it but try a more bland and very very simple diet of nut butters, seed butters, egg, steamed veggies simple unprocessed meats (not grilled but baked or steamed) for a few weeks cooking them really soft by using microwave, steamer, baking dish. to prevent making them hard and avoid any spices or condiments. Also avoid stuff that can irritate the gut like onions, garlic, tomatoes peppers, fruits. I find doing this sort of "resets" me faster.

Link to comment
Share on other sites
inver Apprentice

Yes she has had repeat blood work and everything was normal.  I've gone to top doctors in the area (NYC). She's been tested for everything all negative.  Wondering if another food sensitivity.  Ennis-- I'm going to try this-- put her on a bland diet for a few days.  Everyone is great! Thank you!

 

 

 

 

Link to comment
Share on other sites
inver Apprentice

Lucas, had no idea that corn does not have to be listed.  Hard to believe right? Thanks for the info!!! 

Link to comment
Share on other sites
Ennis-TX Grand Master
4 minutes ago, inver said:

Lucas, had no idea that corn does not have to be listed.  Hard to believe right? Thanks for the info!!! 

I also have a high allergy to corn....it is in everything and everywhere. Really makes life tough as it is undeclared ingredient in some proprietary blends, spices, etc. Also used under many many other names, from fiber, matodextrin, vegetable fiber, and some that make no sense at all.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



RollingAlong Explorer

You might also consider histamine.  That can aggravate things and it is tricky to test for.  However, eating "anti-histaminically" is fairly easy and healthy.    My spouse solved a lot of mysterious reactions when he started trying to take histamine into account.  

We found this website to be very helpful.  Open Original Shared Link

Histamine  could be an additional variable to your hunt - good luck! 

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,457
    • Most Online (within 30 mins)
      7,748

    Kitty-Kat001
    Newest Member
    Kitty-Kat001
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      And the fact is, no two celiacs will necessarily respond the same to gluten exposure. Some are "silent" celiacs and don't experience obvious symptoms. But that doesn't mean no harm is being done to their gut. It just means it is subclinical. 
    • AlyO
      Thank you, Trents.  I appreciate your helpful and friendly reply. It seems more likely to be a bug.  It has been a pretty severe bought. I feel that I don’t have enough experience to know what signs my little one shows after exposure to gluten. 
    • trents
      Hannah24, be aware that if you are on a gluten free diet, you will invalidate any further testing for celiac disease (except genetics) and would need to go back to eating significant amounts of gluten for weeks or months to qualify for valid testing.
    • knitty kitty
      Hello, @Hannah24 Have you had a DNA test done?  Celiac Disease is genetic.  You must have at least one gene to develop celiac disease.  You don't have to be consuming gluten for a genetic test.   Anemia, diabetes and thiamine deficiency can cause false negatives.  Some lucky people are seronegative, but still have celiac disease.  Peripheral neuropathy, tingling in hands and feet are symptoms of vitamin deficiencies.  Vitamin C, Thiamine B1, Niacin B3, Pyridoxine B6, and Cobalamine B12 can each cause peripheral neuropathy.  These same vitamins are needed to produce blood cells.  Most undiagnosed Celiacs suffer from nutritional deficiencies. The DNA test would be helpful.
    • trents
      We do hear of cases of remission but they generally eventually revert back. I wouldn't push your luck.
×
×
  • Create New...