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

Is Biopsy Worth The Trouble At This Point?

WatercolorMist

Recommended Posts

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?

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

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748
    ChrisMary
    Newest Member
    ChrisMary
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!
    • knitty kitty
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By knitty kitty · Posted

      Some people prefer eating gluten before bed, then sleeping through the worst symptoms at night.  You might want to try that and see if that makes any difference.   Several slices of toast for breakfast sounds okay.  Just try to work up to the Ten grams of gluten.  Cookies might only have a half of a gram of gluten.  The weight of the whole cookie is not the same as the amount of gluten in it.  So do try to eat bread things with big bubbles, like cinnamon rolls.   Yeah, I'm familiar with the "death warmed over" feeling.  I hope you get the genetic test results quickly.  I despise how we have to make ourselves sick to get a diagnosis.  Hang in there, sweetie, the tribe is supporting you.  
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thank you, a little expensive but glad to have this source. 
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      @knitty kitty  Thank you very much for the advice. I did the exam this morning, my doctor actually suggested me to take something called "Celiac duo test" in which I first do the genetic test and if it's positive, then I'll have to do the antigen blood test. I have to attend 1 month until my results are ready, so I have some weeks to increase the amount of gluten I eat daily. It will be hard because my health is not the best right now, but I also did a blood test to cheek my nutritional deficiencies. The results will arrive on Tuesday, so I can ask my doctor what should I do to control my symptoms and blood levels during this month. For now I'm resting and paying attention to what I eat— at least I don’t look like a vampire who just woke up, like I did yesterday. I'm still scared because is the first time I've felt this sick, but this is the right moment to turn things around for the better.  I realized that if I eat gluten at lunch I cannot finish the day properly, I become severely tired and sometimes my stomach hurts a lot - let's not talk about the bloating that starts later. Do you think is it ok to eat gluten just in the morning, like some cookies and slices of bread for breakfast? 
    • knitty kitty
      Help I’m cross contaminating myself,

      By knitty kitty · Posted

      I suffer from Dermatitis Herpetiformis, too.  Like @Rogol72, I had to cut out all gluten-free processed foods, dairy, oats, and eggs before my skin cleared up.  I followed the Autoimmune Protocol Diet. I also supplement with the eight essential B vitamins.  (Meat and liver are great sources of B vitamins.)  Low levels of certain B vitamins ( B12, Thiamine, Pyridoxine, and Niacin) can affect the nerves, resulting in itching and tingling.  Niacin especially helps with the itching and healing the blisters.  Tallow Balm helps with the healing, too.  Zinc and Vitamin A also help with skin health.   I've gotten such good results with Niacin and the other vitamins mentioned that I've never had to go on Dapsone.
×
×
  • 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.