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

Could I Still Have Celiac?


shmlaura

Recommended Posts

shmlaura Newbie

hey all,

i am twenty years old and have had food problems since i was born. i was on a special rotational diet when i was a child, and was diagnosed with lactose intolerance, and a host of other allergies. As i grew up, i grew out of most of my allergies, but still had pretty bad digestive problems that have always been attributed to IBS. About three years ago i was diagnosed with Anorexia and as i have been on the road to recovery, trying to find foods that i had stopped eating, that would not make me sick now was a big issue. My mom suggested i go wheat free because as i child i had had a biopsy done, at 18 months, which came back negative, but as i have gathered from research, that does not necessairly mean i don;t have a problem. I have read research that eating disorders could help with the onset of diseases such as celiac because your body goes with out gulten for a long time, and then you try and reintroduce it, and your body just says no essentially. Well i have gone wheat free and my depression went away within two days, no joke, and i just felt so much better overall. I ocassionally "cheat" and will have crackers once a week, majority of the time i get sick, other times, my body doesnt seem to care. Sorry for the long history, but i would really like your opinions. My doctor has been of NO help, and i was wondering basically if i could still have celiac disease even though i can tolerate gluten once in a great while in a handful of crackers form. Thanks for your help in advance.

Laura


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



Celiac.com Sponsor (A8-M):



Dwight Senne Rookie

Hi Laura,

You say "wheat free" - is that the only gluten product you have avoided? If so, it is more likely that you have a wheat sensitivity, and not Celiac Disease.

If you are completely gluten free (meaning no wheat, rye, barley, oats, spelt, etc.) then it is my unprofessional opinion that you should not be gluten free right now. It will be very difficult to get a diagnosis if you remain gluten free.

I would suggest you take a two pronged approach if you are completely gluten free: First, start trying to slowly re-introduce gluten in your diet. Second, if you have not yet seen a gastroenterologist, go see one. If you have seen one, get a different one! Call around and find one who is experienced with Celiac. Inform him/her of your situation of being relatively gluten free so they do not waste a blood test on you right away. I'm thinking you will need to be on gluten for at least a month or two before the blood test can give accurate results.

Depending on those results and your doctor's impressions of your situation, you may then undergo an endoscopy to get biopsies of your small intestines. For that test, you may need to be on a gluten containing diet for several months!

It seems horrible to have to go through all of that, I know, but it is the only way to get an accurate diagnosis that will be legally and medically recognized.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

    2. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Second chance

    3. - Scott Adams replied to elisejunker44's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Schar's products contain wheat!

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,598
    • Most Online (within 30 mins)
      7,748

    Caroline Alexandria
    Newest Member
    Caroline Alexandria
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
    • Scott Adams
      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
    • Scott Adams
      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
    • Scott Adams
      I understand why that feels concerning. Some Schär products use specially processed wheat starch that has had the gluten removed to meet strict gluten-free standards (under 20 ppm in the U.S. and EU), which is why they can legally and safely be labeled “gluten free” for people with celiac disease. However, wheat must still be listed in the ingredients and allergen statement because it is derived from wheat, even though the gluten protein has been removed. For individuals with a true wheat allergy, these products are not appropriate—but for those with celiac disease, properly tested gluten-free wheat starch is considered safe under current medical guidelines. That said, it’s completely reasonable to prefer products made without wheat starch if that gives you greater confidence, and clearer front-of-package communication could certainly help reduce confusion for shoppers.
    • elisejunker44
      I have enjoyed Schar's gluten free products for years. However, some items Do contain Wheat and are not clearly labeled on the front. Indeed the package states 'gluten free' on the front, and it is not until you read the ingredient label that one see's wheat as the first ingredient. Some celiacs may be willing to take a chance on this 'gluten free wheat', but not me. I strongly feel that the labeling for these wheat containing products should be clearly labeled on the front, with prehaps a different color and not using the 'no gluten symbol on the front. The products are not inexpensive, and also dangerous for my health!
×
×
  • 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.