Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Glutened Before Biopsy?

ana

Recommended Posts

ana Rookie
ana
Posted

I was the one who asked if a biopsy was really necessary. I had made an appointment and was chickening out because of my fear of anesthetic etc. I have to wait a while before i see the doc again so i need help from people who know.

The other problem is i really want to try the gluten free diet, but do I have to continue to eat gluten until i have the biopsy? I have been so miserable for the past few weeks with stomach cramps and pain. my consultation with the gastroenterologist is not until the end of November! he couldnt' get me in any sooner.

I also have been reading the boards here and there and It almost brought me to tears thinking this might be the answer, i've felt like a freak all my life with my stomach issues. I can't go shopping or out for any length of time because if i eat there's the bathroom issue. I just want to feel better.

my doctor isn't convinced it's celiac because my blood work shows me to be healthy, excepting the positive Glidian panel tests. (I am a careful eater, try to eat nutritiously, excercise regularly.) She forgot or hasn't looked back at my chart over the years where i was anemic, my diagnosis of IBS, had excessive nose bleeds, my skin issues, the time i lost almost all my hair, the time i came to her because i bruised so easily, or the depression for all my life. then there's my teeth. how about the 6 root canals in the past 5 years, my gums were a mess and you'd think i wasn't capable of any dental hygiene (my husband accused me of that) I've struggled with excess weight and the is another thing in her mind, you would be underweight if you had celiac. what iv'e read here, that isn't necessarily true. I'm happy to have found you all.

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

Ana,

Welcome to the board! I am happy you have found us.

I just have a few minutes to write, so this will be short, but I wanted to get you some information.

I'm not sure what else your doctor is looking for....you had the positive gliadin test---that is a marker for Celiac!!! What else was he expecting? The Celiac panel is to test for Celiac...no other blood work "measures" Celiac. Ugh, unforunately you are learning that doctors know little to nothing about Celiac, and often, give out INCORRECT information. Obviously, not all doctors are like this...but many are. Your blood tests indicate you have a problem with gluten. Some choose to have the biopsy, others do not.

If you are going to do the biopsy, yes, you HAVE to keep eating gluten. Otherwise you will begin to heal (if you have Celiac) and the biopsy will be WORTHLESS. Trust me, I know. My doctor told me to go gluten free before the procedure....go figure. (He knew nothing about Celiac, obviously).

Celiac has a list of numerous symptoms...ranging from asymptomatic to completely debilitating, and many include contradictions: constipation/diarrhea, overweight/underweight, etc.

Please read the book "Celiac Disease: A hidden epidemic" by Dr. Peter Green, a leading Celiac researcher/physician at Columbia Univ. You can purchase it on amazon or get it at some bookstores. It has so much thorough information and will be a good guide to help you deal with doctors who don't know anything. I use it almost daily for reference and bring it with me to all app'ts.

Also, for typical endoscopies, you will be "heavily sedated" versus general anesthia. You will be "asleep" but not "out."....I've had three :)

I hope this is a start and can help you some. PM me if there is anything else I can do. We'll help you get through this--we promise! And, ask ANY questions...its a strange disease and we have ALL been there.

Laura

Archived

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

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


  • Member Statistics

    • Total Members
      130,066
    • Most Online (within 30 mins)
      7,748
    USARay
    Newest Member
    USARay
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Gluten Sensitivity

      By trents · Posted

      So, @StuartJ, are you @rjane's celiac spouse?
    • StuartJ
      Gluten Sensitivity

      By StuartJ · Posted

      Update: great news, she made a gluten-free loaf yesterday, switching the Xanthan for cornstarch, and adding a little more milk than the recipe called for, also used a regular quick bake setting instead of the gluten free.  The result was a superb and delicious bread that I could eat, enjoy and 24 hours later still no side effects!  😊
    • trents
      Should I ask for more testing? Celiac vs. Gluten Sensitivity

      By trents · Posted

      Welcome to the forum, @Natosha! For future reference, when you share celiac blood antibody test scores, it is helpful to also include reference ranges for negative vs. positive since there are no industry standards in place. Each lab uses different scales. But, you have told us the results of the testing were negative, so we have the big picture. Looks like you had two tests run: tTG-IGA and DGP-IGA. One that should have been run and wasn't is "total IGA" which goes by some other names as well. Total IGA is important to run because it checks for IGA deficiency. If a person is IGA deficient, their individual IGA celiac antibody test scores will be artificially low and false negatives can be generated. Some doctors are under the mistaken impression that IGA deficiency only occurs in toddlers but we have had any number of adult contributors on this forum who were IGA deficient. I bring this up as you might ask that your PCP test you for IGA deficiency. No, three days of being gluten free would not likely have much impact on your test scores. I am also assuming that prior to that, you were eating liberal amounts of wheat products and not skimping on them because you suspected they made you ill. If you don't have celiac disease you may very well have NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. I am including an article that discusses the various antibody tests that can be run for celiac disease detection. Your doc only ordered two. As you can see, there are several others. One one misses, another may catch. Some are more sensitive than others or are more specific. You could ask your doc for a "full celiac panel". For reference, you would need to be eating an amount of gluten daily for several weeks equivalent to what would be found in 4-6 slices of wheat bread leading up to the day of the blood draw or the testing to be valid. This is what current "gluten challenge" guidelines are recommending. By, the way, your doctor referring to starting the gluten free diet to address gluten sensitivity as a "fad" is not a good sign. That's a bad attitude and probably reflects outdated knowledge concerning gluten disorders. I think I would be shopping for another doc.
    • trents
      Should I ask for more testing? Celiac vs. Gluten Sensitivity

      By trents · Posted

      Welcome to the forum, @Natosha! For future reference, when you share celiac blood antibody test scores, it is helpful to also include reference ranges for negative vs. positive since there are no industry standards in place. Each lab uses different scales. But, you have told us the results of the testing were negative, so we have the big picture. Looks like you had two tests run: tTG-IGA and DGP-IGA. One that should have been run and wasn't is "total IGA" which goes by some other names as well. Total IGA is important to run because it checks for IGA deficiency. If a person is IGA deficient, their individual IGA celiac antibody test scores will be artificially low and false negatives can be generated. Some doctors are under the mistaken impression that IGA deficiency only occurs in toddlers but we have had any number of adult contributors on this forum who were IGA deficient. I bring this up as you might ask that your PCP test you for IGA deficiency. No, three days of being gluten free would not likely have much impact on your test scores. I am also assuming that prior to that, you were eating liberal amounts of wheat products and not skimping on them because you suspected they made you ill. If you don't have celiac disease you may very well have NCGS (Non Celiac Gluten Sensitivity. NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. I am including an article that discusses the various antibody tests that can be run for celiac disease detection. Your doc only ordered two. As you can see, there are several others. One one misses, another may catch. Some are more sensitive than others or are more specific. You could ask your doc for a "full celiac panel". For reference, you would need to be eating an amount of gluten daily for several weeks equivalent to what would be found in 4-6 slices of wheat bread leading up to the day of the blood draw or the testing to be valid. This is what current "gluten challenge" guidelines are recommending.  
    • Vickey Matteson
      Upset stomach

      By Vickey Matteson · Posted

      Hi, recently I've started getting nauseated different times of the day. It doesn't last too long but I can't seem to connect it with anything except maybe I'm hungry? Any ideas? Vickey
×
×
  • Create New...