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
Rocco C
Posted

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
kbtoyssni
Posted

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
Rocco C
Posted
  • Author

Wow,

Thanks for the time you took for that detailed response!

Really happy to have found this site.

kenlove Rising Star
kenlove
Posted

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
Lisa
Posted

#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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,034
    • Most Online (within 30 mins)
      7,748
    CE1963
    Newest Member
    CE1963
    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

    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Scott Adams · Posted

      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      Fighting for a name

      By Scott Adams · Posted

      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Celiac getting dentures

      By NanCel · Posted

      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.