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

Sound Like Celiac Disease?


Jaey

Recommended Posts

Jaey Newbie

So last year I went out with a friend and walked around all day shopping at some giant strip mall.  Came home and at night I had a tingle in my right calf.  I stretched it a bit and the next day my ankle was stiff and hurt.  I chalked it up to a sprain of some sort and it was hurting for about 2 months.  The pain would reach up my entire leg.  Then it started to go away and then it spread to my other ankle.  Now I started worrying that it couldn't be an ankle sprain it must be arthritis or something.  So both my ankles ached a bit.  Then my feet and hands would tingle with pin pricks.  Also my muscles would start twitching all over my body.  Little spasms.  That lasted about a week.  Then finally I started getting this pain in my lower rib area over my gallbladder or liver.  It was becoming so intense like this burning ache.  My back around the kidney areas was starting to ache as well.  I did some research and first thought diabetes but stopping all sugar didnt help.  So I tried gluten free and the tingling, twitching, ankle pain, and intestine pain all lessened.  Well the twitching and tingling stopped completely and the ankle pain is only very slight.  But my intestine pain is still there and sometimes it flares up for reasons that I do not know.  I could swear I don't touch gluten but still sometimes the intestine pain worsens and it makes me wonder if it really is gluten after all.  I eat out alot so I don't know if it's cross contamination that's getting me or what.  Does this sound like Celiac to you or something else?  I should have health insurance through obama care very soon so I've been waiting on that to come through for me before I go for a diagnoses.  Should I be stopping all dairy as well just to be safe?

 

 


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



Celiac.com Sponsor (A8-M):



indianaharlegirl Newbie

Hello: you need basic blood work panels to check your liver and kidney functions and white and red blood counts and they need to do an A1C and other tests for diabetes and many other things. I have researched Celiac and it really is different for everybody and they usually don't test for it unless you ask or they have ruled out everything else.....unfortunately. Good luck. Hope you find your answer but those symptoms could be many different things....

nom Newbie

It is easy to get Gluten contamination in restaurants.  Even those who have Gluten Free menus and do everything they can to avoid it, there's still a chance because accidents happen.

 

If you want to give Gluten Free a serious go, you need to stop eating out for at least a couple of weeks, but before you do so you have to scrub your kitchen completely.  I tried it half-heartedly at first a while back, and didn't get as dramatic a change as I did recently.  I went through a fierce withdrawal, which tells me I didn't do it properly the first time.

 

Just my $0.02 anyway.

ravenwoodglass Mentor

It could be celiac or a it could be something else. You need to start eating gluten again if you are going to be tested for celiac. If you are not eating gluten your body won't have the antibodies that the doctors will be looking for to diagnose you. Hope this gets figured out for you soon. 

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
      133,600
    • Most Online (within 30 mins)
      7,748

    C RYLES
    Newest Member
    C RYLES
    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.