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

+biopsy/-labwork

rma94

Recommended Posts

rma94 Newbie
rma94
Posted

My story starts in oct of 2008 when I started having panick attacks. To me they just started for no reason. I was also having abd pain and not able to each any significant amount of food without pain. I was admitted in November for dehydrations. The GI doctor did an egd which showed gastritis, esophageal stricture and

damaged villa with probable celiac disease according to the biopsy. I asked the gi doctor to do blood work and he ordered a I think a ttg-igm. After bugging his office for 2 weeks to get the results his nurse called and says the lab was negative and I didn't have celiac disease. I highly doubt she showed the doctor the results before telling me since I bugged her so much. Is this possible? Thanks

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

Celiac.com Sponsor (A8-M):


samcarter Contributor
samcarter
Posted
My story starts in oct of 2008 when I started having panick attacks. To me they just started for no reason. I was also having abd pain and not able to each any significant amount of food without pain. I was admitted in November for dehydrations. The GI doctor did an egd which showed gastritis, esophageal stricture and

damaged villa with probable celiac disease according to the biopsy. I asked the gi doctor to do blood work and he ordered a I think a ttg-igm. After bugging his office for 2 weeks to get the results his nurse called and says the lab was negative and I didn't have celiac disease. I highly doubt she showed the doctor the results before telling me since I bugged her so much. Is this possible? Thanks

It is entirely possible to have damaged villi and still have a blood test come back negative for celiac; that is why the biopsy is still considered the "gold standard" for a diagnosis. Up to 20 percent of celiacs can have negative EMA, for instance; they're called "seronegative" celiacs. My doctor would only do the EMA test, saying it was the most sensitive for celiac; when it came back negative, even with my symptoms and positive response to the gluten free diet, he said I didn't have celiac disease. :rolleyes:

nikki-uk Enthusiast
nikki-uk
Posted

...another one to add a positive biopsy/negative blood story (my hubby).

It is entirely possible, but I would expect the doc to rule out all other possible causes of damaged villi first :)

bear6954 Apprentice
bear6954
Posted

esophageal stricture is another name for eosinophilic esophagitis. EE is normally caused by an allergic reaction to something - food or environmental. My son was diagnosed with ee when he had is biopsy. Did your doctor recommend treatment for that? I believe my sons was caused by gluten and has gotten much better the longer he is gluten free.

MaryJones2 Enthusiast
MaryJones2
Posted

I'd trust the biopsy over the bloodwork. There are quite a few reasons bloodwork can be negative. Just my opinion, but if your condition improved on the gluten-free diet and you have a positive biopsy then I'd assume it was celiac until proven otherwise. Good luck!

ang1e0251 Contributor
ang1e0251
Posted

Damaged villi sounds like celiac disease to me. Ask for your own copy of the bloodwork and other tests. She could have read it wrong also.

rma94 Newbie
rma94
Posted
  • Author
esophageal stricture is another name for eosinophilic esophagitis. EE is normally caused by an allergic reaction to something - food or environmental. My son was diagnosed with ee when he had is biopsy. Did your doctor recommend treatment for that? I believe my sons was caused by gluten and has gotten much better the longer he is gluten free.

Actually I didn't know about the stricture until I requested a copy of the procedure report.

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

Celiac.com Sponsor (A8-M):


rma94 Newbie
rma94
Posted
  • Author
Damaged villi sounds like celiac disease to me. Ask for your own copy of the bloodwork and other tests. She could have read it wrong also.

Thank you guys for the resonses. I am much improved since following the glutten free life. I guess I am just frustrated with the doctors and

lack of definate (sp?) responses from them.

ang1e0251 Contributor
ang1e0251
Posted

Many of us can relate to that frustration.

caek-is-a-lie Explorer
caek-is-a-lie
Posted

Yeah, I'd get a copy of that report. Even doctors misread lab results. Mine sure did with my thyroid. "You're right in the middle of normal" was in actuality hypothyroidism! :(

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      I worried at one point on my journey whether I had MS, having many of the symptoms myself. However, my symptoms improved dramatically with high dose thiamine hydrochloride, Benfotiamine, and Thiamine TTFD. Thiamine deficiency symptoms overlap with MS symptoms, including changes on brain MRIs. Thiamine deficiency affected my eyes (light sensitivity),...
    2. trents
      - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products...
    3. Matthias
      - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
    5. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748
    VerafromNJ
    Newest Member
    VerafromNJ
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Unexpected gluten exposure risk from cultivated mushrooms

      By trents · Posted

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      Unexpected gluten exposure risk from cultivated mushrooms

      By Matthias · Posted

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.