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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.


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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.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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