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

New Here -couple Of Questions


Rocco C

Recommended Posts

Rocco C Newbie

Hi Everyone,

I was diagnosed after birth and was put on a gluten free diet. In the latter years of grade school, my family doctor tld my mother I had likely grown out of it. I am now 32 and have been having some severe problems the last few years. I have heard that you can not grow out of Celiac disease and so, resumed the gluten free diet.

I must admit that I had never taken Celiac seriously. I had always assumed it was just a food allergy and had o serious short term or long term effects.

For the past four years, I have had kidney stones. Six months ago, I started to have pain in my lower left abdomen. The pain got worse and worse. I then started to get extremely bloated whenever I ate anything. In the past month I have lost 18 lbs. I also have itchiness (no hives), severe knee pain and mouth sores.

I have been to emergency and was released ... they said the pain was from diverticulosis. I was then admitted to the hospital a few days later and was in there for a week, until I could get in for an endoscopy/colon. I got back from the hospital last night and the doctor said there was no evidence of any ulceritus, crohnes or other stomach disorder. He said the pain in my abdomen could not be from celiac because celiac does not hurt. He said he took a few biopsies from my upper and lower areas and would get to me in a couple of weeks. So here are my questions.

1. Is it possible that a person can out grow their celiac disease?

2. Can a person have celiac disease and be overweight?

3. In some instances, can celiac disease cause severe abdominal pain, in the lower left area ... painful enough to require narcotic painkillers? I was prescribed endocet, ibuprofin, and morphine and none seem to really get rid of the pain.

4. Has anyone else experienced severe pain in any of the following areas:

-knees

-lower left abdomen

-pilodinal cist

5. Has anyone had frequent cases of kidney stones associated with celiac disease.

6. Is there any way to connect/test the numbness in my lower left leg to show that it is celiac disease related?

7. I have read in some parts, that inhaling gluten can cause a reaction. Is there any documented proof of this? I work around grain railway cars. Could inhaling this affect me?

Sorry for all the questions. I have been taking this really seriously now and realize that I am very lucky to not have any of the more serious complications after not following a strict diet.

Thank You All :)

Rocco


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



Celiac.com Sponsor (A8-M):



kbtoyssni Contributor

In the latter years of grade school, my family doctor tld my mother I had likely grown out of it. I am now 32 and have been having some severe problems the last few years.

-This was a very common misconception that doctors used to have.

1. Is it possible that a person can out grow their celiac disease?

-No.

2. Can a person have celiac disease and be overweight?

-Yes. Some studies have shown 40% of celiacs are overweight.

3. In some instances, can celiac disease cause severe abdominal pain, in the lower left area ... painful enough to require narcotic painkillers? I was prescribed endocet, ibuprofin, and morphine and none seem to really get rid of the pain.

-Yes, I think so. I never experienced this, but I'm sure it can happen.

4. Has anyone else experienced severe pain in any of the following areas:

-knees

-lower left abdomen

-pilodinal cist

-Yes. I had chronic joint and muscle pain (including knee joints) and chronic fatigue.

5. Has anyone had frequent cases of kidney stones associated with celiac disease.

-I haven't, but I'm sure someone here has :)

6. Is there any way to connect/test the numbness in my lower left leg to show that it is celiac disease related?

-Hmmm, not sure if there's a way to test for it. If you go gluten-free and it goes away, is that enough proof for you? Try searching for numbness on this site - I know I've seen threads about this before.

7. I have read in some parts, that inhaling gluten can cause a reaction. Is there any documented proof of this? I work around grain railway cars. Could inhaling this affect me?

-Not sure if there's documented proof, but if you inhale it, it gets in your nose and drains down into your stomach, then you can get glutened. Many people who worked around flour in bakeries or pizza places didn't get better until they quit. Wearing a face mask may help.

Rocco C Newbie

Wow,

Thanks for the time you took for that detailed response!

Really happy to have found this site.

kenlove Rising Star

Its great you already got some good answers, Just wanted to say that for me inhaling flour, grain dust or anything with gluten gives me the abdomen pains. Can't even go into a kitchen until a day after something was breaded.

Good uck

ken

Wow,

Thanks for the time you took for that detailed response!

Really happy to have found this site.

Lisa Mentor

#6 - Peripheral Neuropathy - Open Original Shared Link

Causes of PN are diabetes, excess alcohol and other autoimmune illness ( i.e Celiac Disease)

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 Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,212
    • Most Online (within 30 mins)
      7,748

    Melissa McGowan
    Newest Member
    Melissa McGowan
    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

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • 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.
×
×
  • 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.