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

Help! Cc Vs Other Allergies, (Company Name Removed - They Spammed This Forum and are Banned)?


Ashlynn6

Recommended Posts

Ashlynn6 Rookie

I've been gluten free for about 3 months. I've had blood work and endoscopy/colonoscopy both coming back perfect with no problems. My dr and I agreed to try a gluten free diet and it's been a night and day difference. He has me diagnosed as gluten intolerant. I'm eating mostly fresh foods like fruits, veggies, meat, and none to very little processed foods. I've noticed I seem to be very sensitive to what I think maybe cross contamination and still get awful headaches every once in a while.

My nutritionist is suggesting I take the A. L. C. A. T. Test to look for other things I maybe having problems with. Maybe it's not cc but something else?

The test is like $800 is it worth it? Am I just too new to gluten free I need to wait and allow body to settle in? But my endoscopy was clean and saw no damage. Could I really be that sensitive to cc with gluten intolerance? Also my dr only recommended a 2 week gluten challenge before the endoscope, is it possible that was too short and the damage was already healed?


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



Celiac.com Sponsor (A8-M):



sa1937 Community Regular

I've been gluten free for about 3 months. I've had blood work and endoscopy/colonoscopy both coming back perfect with no problems. My dr and I agreed to try a gluten free diet and it's been a night and day difference. He has me diagnosed as gluten intolerant. I'm eating mostly fresh foods like fruits, veggies, meat, and none to very little processed foods. I've noticed I seem to be very sensitive to what I think maybe cross contamination and still get awful headaches every once in a while.

My nutritionist is suggesting I take the A. L. C. A. T. Test to look for other things I maybe having problems with. Maybe it's not cc but something else?

The test is like $800 is it worth it? Am I just too new to gluten free I need to wait and allow body to settle in? But my endoscopy was clean and saw no damage. Could I really be that sensitive to cc with gluten intolerance? Also my dr only recommended a 2 week gluten challenge before the endoscope, is it possible that was too short and the damage was already healed?

Welcome, Ashlynn! A two-week gluten challenge is clearly not long enough to even hope that you'd get a positive biopsy if you'd been gluten-free for three months. I think you already have your answer with a positive response to your gluten-free diet.

That said, there's no way I'd pay $800 out of pocket for any test. But then I'm cheap and if insurance doesn't cover it, I'd skip it. From all I've read here on the forum, food intolerance tests aren't really all that accurate. Of course, that's just my opinion and your mileage may vary. It's possible that other food intolerances/sensitivities may crop up after we've gone gluten-free. CC is always a possibility. Is your household gluten-free or are you eating out a lot?

GFinDC Veteran

I don't think there are many food intolerance tests around that are reliable. Maybe lactose intolerance hydrogen breath testing and fructose intolerance testing,. Enterolab does some stool testing, but I don't know what heir reliability is on them. An elimination diet is a pretty good way to go though and doesn't cost any money.

You are still pretty new to the gluten-free diet at 3 months. It may just take some time for things to heal and settle down. Probiotics can be helpful, and also avoiding starch and sugars of any kind in the diet. Taking out dairy is generally a good idea at the beginning, although you may be able to add it back later. I don't think people should eat soy either, but some people have no problem with it. Eating a simple diet without lots of food colors, preservatives, enhancers, and fillers, is easier on your digestive system. Foods with 3 or less ingredients on the package are generally a safe bet. (As long as they are not gluten containing).

Ashlynn6 Rookie

My household is 90% gluten free. I've redone my kitchen and haven't gotten sick at home in a long time. But I do notice if I eat a gluten free bar, baking mix, Or anything that has a "flour" replacement I still get sick. I do also get sick if I try to eat out too half the time. Once from outback, Boston market and Wendy's potatoe. I went to a bakery that has gluten free cupcakes and she reviewed all the precautions they take and I still got sick.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,201
    • Most Online (within 30 mins)
      7,748

    Judy Wysocki
    Newest Member
    Judy Wysocki
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.