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

Patholoy Report - Followup

alevoy18

Recommended Posts

alevoy18 Explorer
alevoy18
Posted

Some of you may know my history from past post. To summarize what has happened. I was diagnosed MArsh 3B and postive tTg-IGA (56 when >20 is strong positive) two years ago. Recently I had an tTg-IGA test come back as 372 (normal <20). My Gastro was alarmed by this number and said he has never seen anything so high. He just did an enteroscopy and have received the results. We are still waiting on the CD3/CD8 staining to rule out refractory sprue. My questions about the report are below.

1. What does "no definitive evidence of abnormal lymphocytes" mean? Why wouldn't it just say "No abnormal lymphocytes" like my first biopsy results said? Any insight here?

2. With a tTG of 372, my Gastro was sure it would be total atrophy. Also, he said by visual my intestine looked complete flat, cracked and fold scalloping. He said it looked like a textbook case of complete atrophy. With all of this, it seems weird it is just a Marsh 3A result?

3. Any reason why they mentioned the "Heavy infiltrate of lamina" when it already says increased IEL. Isn't that the same idea?

4. Any idea why this was chosen for Internal Consultation? I'm not sure what this is as my last one didn't have this.

5. My Gastro said he sent if for CD3/CD8 staining, but I don't see this mentioned here. Would it be a separate process since this is just the original surgical pathology report.

I know some of these questions probably wont have answers, but I wanted to see if anybody had experience. Thanks a million!!

Report

-------

The biopsy shows duodenal mucosa with mild villous abnormalities and increased IEL counts. The lamina propria shows heavy infiltrate almost entirely made up of plasma cells. In view of clinical history, the morphological findings are compatible with Celiac Disease. There is no definitive evidence of abnormal lymphocytes.

This case has been discussed at our internal consultations on Sept 9, 2011

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Have you been gluten free for 2 years? This is alarming for 2 years gluten-free. I will be checking back to see what others who know more say.

ravenwoodglass Mentor
ravenwoodglass
Posted

I agree that is quite alarming if you have been strictly gluten-free for a couple years. I with I had some answers for you and hope your doctor can figure things out for you soon. It must be very frustrating for you. How are you feeling? Could you maybe have another intolerance like perhaps soy or casien that is keeping you from healing?

alevoy18 Explorer
alevoy18
Posted
  • Author

Thanks to both of you.

Yeah I've been strictly gluten free for these two years. I made mistakes in the beginning, but over the last year I cut out processed foods. But as I got stricter, my numbers got higher. I am happy to see only Marsh 3A since I expected 3C, but who is to say it even really improved because another biopsy could show 3B (this was just 3 biopsies). I really was hoping for the staining results, but I didn't see mention here.

I have been tested for other food allergies and lactose, but negative for all. I had no GI symptoms through all of this, but over the last 2 months I've had gas, small amounts of mucus in stool, some floating stools and major constipation. Sorry if that is too much info. Who knows whats wrong, but no tumors or signs of lymphoma makes me happy at least!!!

Thanks again

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks to both of you.

Yeah I've been strictly gluten free for these two years. I made mistakes in the beginning, but over the last year I cut out processed foods. But as I got stricter, my numbers got higher. I am happy to see only Marsh 3A since I expected 3C, but who is to say it even really improved because another biopsy could show 3B (this was just 3 biopsies). I really was hoping for the staining results, but I didn't see mention here.

I have been tested for other food allergies and lactose, but negative for all. I had no GI symptoms through all of this, but over the last 2 months I've had gas, small amounts of mucus in stool, some floating stools and major constipation. Sorry if that is too much info. Who knows whats wrong, but no tumors or signs of lymphoma makes me happy at least!!!

Thanks again

Be aware that soy and casien intolerance will not show up in allergy panels as they are not allergies. If you consume either of them drop them out of your diet for a bit and then challenge them. It may not be the case for you but soy does to me what you describe and it took me a long time to figure out I had an issue with it and it was in a lot of the gluten-free stuff I was consuming.

Twinklestars Contributor
Twinklestars
Posted

I agree with Raven. Perhaps strip your diet down to the bare minimum, like a new celiac. Rice, fruit, veg and meat for a couple of months. Then add in dairy, soy etc one at a time. Something is preventing you from healing.

Also, have you considered asking your doctor to run the blood tests again? Even though there is still damage in your intestines, the reading is very high and perhaps the lab made a mistake and it my be elevated but not quite that high. Labs make mistakes all the time! Once I had a blood test result that came back saying I wasn't pregnant and that was very wrong! :lol:

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
      133,326
    • Most Online (within 30 mins)
      7,748
    Jaxon Reed
    Newest Member
    Jaxon Reed
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • 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.