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RSE8

By RSE8
in Coping with Celiac Disease

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RSE8 Newbie
RSE8
Posted

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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Electra Enthusiast
Electra
Posted
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
RSE8
Posted
  • Author

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
Guest j_mommy
Posted

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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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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