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

Query Re Possible Celiac Diagnosis


JC1967

Recommended Posts

JC1967 Newbie

I have just had a positive blood test for celiac disease (my specialist said my celiac marker was more than 50% over the 'no celiac' threshold!) and am waiting on my gastroscopy results (my specialist took numerous biopsies from my small intestine). My specialist could see no obvious physical damage etc based on the gastroscopy alone, but said to wait for the biopsy results. I have continued to eat gluten products as normal leading up to (and after) the gastroscopy.

My query is - if my biopsies come back normal, should I still go on a trial gluten-free diet to see if my symptoms improve? I am seeing my specialist in 2 weeks time to discuss the biopsy results etc.

Some background on me:

Last year I had a previous celiac blood test (which came back negative) and a gastroscopy/biopsy (which also came back negative although only one sample was taken). I have also had a colonoscopy last year which came back negative as well.

My symptoms have been various - loss of weight (10 kg in one year), lots of gas (from both ends), steathorrhea, nausea, pain/stomach discomfort, abdominal bloating etc.

While its likely that my digestive issues may also be due to chronic pancreatitis (I have had acute pancreatitis attacks in the past but my pancreas is normal on scans etc), I want to rule out the possibility of celiac disease given my recent positive celiac blood test. I am taking pancreatic digestive enzymes at the moment.

Any advice would be appreciated.

JC


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

Yes try going off gluten no matter what the biopsy says. You may be in the process of developing celiac, with the antibodies but not a lot of damage accumultated yet. Also, the underlying problem behind your pancreatic issues is probably celiac disease.

Roda Rising Star

Yes try going off gluten no matter what the biopsy says. You may be in the process of developing celiac, with the antibodies but not a lot of damage accumultated yet. Also, the underlying problem behind your pancreatic issues is probably celiac disease.

I was thinking the same thing!

JC1967 Newbie

Thanks.

A further query - how long on a gluten-free diet should I stay before noticing any positive symptom changes? Or will this vary from person to person?

JC

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,991
    • Most Online (within 30 mins)
      7,748

    ZENken
    Newest Member
    ZENken
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • 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.