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Is Biopsy Worth The Trouble At This Point?

WatercolorMist

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WatercolorMist Newbie
WatercolorMist
Posted

Hi, I'm new to this forum. I am a cervical cancer survivor with a history of radiation proctitis and ulcerative colitis. I have a brother positively diagnosed with celiac. I have been on the specific carbohydrate diet (SCD) for a year to cure the colitis. The proctitis is more difficult to manage but doing well nevertheless.

As part of the SCD I was naturally gluten-free and continue to be gluten-free for a total of at least 18 months now with good results. I tried having some wheat after a year on the SCD but quickly went back gluten-free.

The SCD claims to cure celiac in some after strict adherence for a year. I don't know what to do now other than go back on gluten and have a biopsy. With my damaged rectum (from the proctitis and attendant scars on the rectum from radiation treatment for the cancer) I am concerned that I will not be able to tolerate going back on gluten for an extended period of time.

I'm seeing a rheumatologist who is interested in helping me with the celiac. I have radiation burns to my pelvis which resulted in osteoporosis. I have medical insurance and a well meaning rheumatologist.

I scored 66 on a tissue transglutaminase Ab, IgA blood test. But I was already off gluten 3 months or more. Is having a biopsy worth the trouble at this point?

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Jestgar Rising Star
Jestgar
Posted

uh....no. In my opinion.

Your diet is yours to arrange, if you don't want to eat gluten, then don't.

TrillumHunter Enthusiast
TrillumHunter
Posted

So, you're not a diagnosed celiac? If a biopsy doesn't show celiac would you want to eat gluten again? The SCD is pretty hardcore. If you're happy and feel well on it, why change? If you had celiac before you started it, you may have healed enough that a biopsy could miss the damage. It won't cure celiac but it will allow the small bowel to heal.

Sounds like you've been through the mill. :blink: If you feel well now, why change?

ravenwoodglass Mentor
ravenwoodglass
Posted

I have to agree with the others. If your Ttg was 66 after 3 months gluten free I can only imagine how high it must have been beforehand. That combined with your response to the diet and the family history is pretty diagnositic. I would not risk the effects of a gluten challenge and just stay with the diet. If the SCD is getting to be too much for you perhaps you could try adding in some other gluten free foods and see how you tolerate them but I would leave the gluten alone.

WatercolorMist Newbie
WatercolorMist
Posted
  • Author

Thank you so much for your kindness in responding to my concerns. I respect and trust your opinions as I know you have really heard me. It is a comfort.

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      results from 13 day gluten challenge - does this mean I can't have celiac?

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      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
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