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 To The Forum


RSE8

Recommended Posts

RSE8 Newbie

Hi...I'm a 35 year old male, recently diagnosed with celiac's....well, they think. I should start from the beginning. October 2006 I went on a family vacation to Disney World for 10 days. On the second day, I started having horrible stomach pains. I tried to suck it up because we were at one of the parks and I didn't want to ruin everyones time but I couldn't and pretty much ended up on a bathroom floor rolled up in a ball it hurt so bad. My brother took me to the Emergency Room. After spending hours there, the doctor came in and told me I have diverticulitis. They would admit me for IV antibiotics. So, I spent 5 days in the hospital. When they let me out, I was feeling better. Still a little tender in the stomach, but not too bad. November 2006 I started having the pains again. Not as bad as Florida but close. I went to the ER at the hospital I work at. They admitted me for Diverticulitis for 7 days. They sent me home taking cipro and flagyl and dilauded for pain. I got into a gastroenterologist who did a cholonoscopy and a sigmoidoscopy. She told me there was nothing wrong with me. Yet, I was still on the antibiotics and pain meds. I found another gastroenterologist. He had me quit taking the antibiotics (I was on them for months). He did another colonoscopy and sigmoidoscopy. In the mean time, my stomach would be alright for a couple weeks then start hurting again. This doctor told me he thinks I may have Chron's. Put me on some medicine for it. October of 07 I was visiting family around Pittsburgh and started with the stomach pains again. I went to the ER there and they said it was diverticulitis. Gave me more antibiotics and pain meds. I refused to take the pain meds because I was scared of getting addicted....When I went off the dilauded after taking it for months, I went thru withdrawals that were horrible. So I went back to the doctor who did a small bowel endoscopy. They called a couple weeks ago and said they THINK I have Celiac Disease....I am so sick of them not knowing what it is....there is something going on and I just want to get it better. My stomach hasn't been too bad since maybe right before Xmas. Then this past week it started bothering me again....most of the time it just feels like there is a lot of pressure in it....then other times I get sharp pains. I thought I'd start the glutoen free diet this week...well, I wasn't prepared. I went to the grocery store and pretty much just walked up and down the isles for what seemed like forever....not knowing what i could get or what I am able to eat. I am just frustrated and sorry for rambling on but I honestly don't think I have Celiac's but I just don't know where to turn for help anymore. I don't know....Thank you for listening and any advice you can give me would be great.


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



Celiac.com Sponsor (A8-M):



Electra Enthusiast
Hi...I'm a 35 year old male, recently diagnosed with celiac's....well, they think. I should start from the beginning. October 2006 I went on a family vacation to Disney World for 10 days. On the second day, I started having horrible stomach pains. I tried to suck it up because we were at one of the parks and I didn't want to ruin everyones time but I couldn't and pretty much ended up on a bathroom floor rolled up in a ball it hurt so bad. My brother took me to the Emergency Room. After spending hours there, the doctor came in and told me I have diverticulitis. They would admit me for IV antibiotics. So, I spent 5 days in the hospital. When they let me out, I was feeling better. Still a little tender in the stomach, but not too bad. November 2006 I started having the pains again. Not as bad as Florida but close. I went to the ER at the hospital I work at. They admitted me for Diverticulitis for 7 days. They sent me home taking cipro and flagyl and dilauded for pain. I got into a gastroenterologist who did a cholonoscopy and a sigmoidoscopy. She told me there was nothing wrong with me. Yet, I was still on the antibiotics and pain meds. I found another gastroenterologist. He had me quit taking the antibiotics (I was on them for months). He did another colonoscopy and sigmoidoscopy. In the mean time, my stomach would be alright for a couple weeks then start hurting again. This doctor told me he thinks I may have Chron's. Put me on some medicine for it. October of 07 I was visiting family around Pittsburgh and started with the stomach pains again. I went to the ER there and they said it was diverticulitis. Gave me more antibiotics and pain meds. I refused to take the pain meds because I was scared of getting addicted....When I went off the dilauded after taking it for months, I went thru withdrawals that were horrible. So I went back to the doctor who did a small bowel endoscopy. They called a couple weeks ago and said they THINK I have Celiac Disease....I am so sick of them not knowing what it is....there is something going on and I just want to get it better. My stomach hasn't been too bad since maybe right before Xmas. Then this past week it started bothering me again....most of the time it just feels like there is a lot of pressure in it....then other times I get sharp pains. I thought I'd start the glutoen free diet this week...well, I wasn't prepared. I went to the grocery store and pretty much just walked up and down the isles for what seemed like forever....not knowing what i could get or what I am able to eat. I am just frustrated and sorry for rambling on but I honestly don't think I have Celiac's but I just don't know where to turn for help anymore. I don't know....Thank you for listening and any advice you can give me would be great.

If they think you have Celiac they should be trying to get you in for a biopsy very soon. If that is the case you may not want to stop eating gluten because you may heal up before the biopsy.

I had pain constantly before I was diagnosed with Celiac and I also was diagnosed with diverticulitis, and the pains I used to have are completely gone and I haven't had any of the diverticulitis symptoms since I've gone gluten free. I personally think I only had diveriticulitis symptoms because celiac was irritating my entire system and everything was getting weak.

I was also rushed to the ER once after purposely infecting myself with gluten because I had a nurve test coming up and I wanted to initiate symptoms, and those pains were so much different. I was doubled over in pain!! They couldn't find a diagnosis or cause, but the dr. said he thought it was ulsers which I don't buy because I've never had a problem with them before and I just know it was from the crackers I ate. The ER dr. also said if I did have celiac one cracker could initiate pains like that, so I'm now sure that's what it was.

Good Luck and I hope you get some answers soon!!

RSE8 Newbie

Thanks for the reply....I think that is why I am confused, they did biopsies and they came up showing everything was good. I just think he is grabbing at straws.

Guest j_mommy

Hello!!

Did they do the blood tests too???? Maybe that would help clarify if they are questionisng the results of your biopsy.

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. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,156
    • Most Online (within 30 mins)
      7,748

    mike101020
    Newest Member
    mike101020
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.