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Immunosuppressants

Celiacandme

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Celiacandme Apprentice
Celiacandme
Posted

I'm just curious if anyone here has had to take immunosuppressants because of their celiac disease? If so, were you able to come off it after some time? What made the determination that your body needed to take it? Did you notice a difference?
 

If anyone has anything to share regarding celiac disease and immunosuppressants, I'd love to hear it.

 

Thanks so much!

  • 1 month later...
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Nicki Raeleen Rookie
Nicki Raeleen
Posted

Omg finally someone!!!! YES! I have just been  prescribed  them for my celiac. My GI doctor told me it's extremely rare.

they determined I needed to take it because even after blood test, food long, simple diets, and MRIs looking for  lymphomas, my body was still producing an extremely high level of antibodies (about 27-35). I haven't started them yet, but my sister has chrons so she takes a much high does of them and tell me the side effects are worth the results (if it even works). 

CeliacBurger Newbie
CeliacBurger
Posted

Have you looked into Low Dose Naltrexone?  Or LDN.  My understanding is that it can be extremely helpful as an immune modulator for people with celiac, without resorting to prednisone or other heavy duty immune suppressants.   Google it and see what you think. 

Nicki Raeleen Rookie
Nicki Raeleen
Posted

I looked it up and it looks very fascinating. I couldn't find much correlation between it and suppressing immune systems. Something did occur to me though ( I feel a bit silly saying it out loud), that maybe my Celia isn't the problem at all. They are putting me on the immune suppressants to make me feel well enough to do more testing. Even though my tTG, Atg, and other levels related to celiac are extremely high, maybe it might be something more serious. The Celiac was just the scapegoat. 

I have head of some non-responsive celiac patients developing other autoimmune diseases over time ( like Crhons, lupus, and cancer) witch would explain why the go to would be immune suppressors. 

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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