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

Follow-up Biopsy Results


Moondanse

Recommended Posts

Moondanse Explorer

I am 32 years old and I was officially diagnosed with Celiac Disease in January '07 through blood tests and biopsy.

I have done really well following the gluten-free diet - I check all my labels, I've changed my hair products and cosmetics, I call pharmaceutical companies to check my meds, etc.

I have had ongoing health issues that have had me in and out of the doctor's office this last year though. In addition, I lost about 25 pounds starting about 9 months in to the gluten free diet - they have not been able to determine why. My gut is in a far worse state now than it was over a year ago. It's tender to the touch, constantly bloated and never at rest (gurgly). I do not, however, have any diarrhea. (which is different from pre-Celiac diagnosis).

I'm working with a new holistic doctor who has run a whole host of new/different labs, including a speciment test through Genova Diagnostics that checks for yeast/bacteria/overall gut 'environment'. I'm seeing her today for those results, which I am anxious to get.

I also just had my first colonoscopy and a follow-up endoscopy done because of the ongoing issues.

The colonoscopy was clean. My pathology report on the biopsies came back stating:

celiac disease 3 antibody demonstrates a focal increase in intraepithelial T lymphocytes supporting a diagnosis of celiac disease. Serologic correlation is warranted. Appearances suggest early disease or possible incomplete response to a gluten free diet.

The note from my doctor recommends seeing a nutritionist to review my diet as he feels that I'm still ingesting gluten.

I have a very, very difficult time seeing how that is possible with all of the care that I take on this diet. Not to mention the fact that I have no diarrhea - which has been the indicator for me when there was contamination (the time between blood tests and biopsy when they made me eat gluten and once contaminated by a medication).

Here's my question:

Could the appearance of the biopsies suggest late healing, rather than early disease? Can they differentiate between something that is trying to heal vs something that is just recently damaged??

If they can make that differentitation, then I will have to accept that I am somehow ingesting gluten. But, I just don't want to over-react and cut things out of my diet again if it is not necessary.

I know that adults don't heal as quickly as children and I would assume that my healing process would probably be a bit slower given the fact that I've been dealing with other medical issues too. So, I wouldn't find it hard to believe that my intestine is not totally healed. What the report doesn't state is whether or not the damage they saw was new damage or old damage or if they can even tell.

I hope that I've made some sort of sense here as I've been rambling. I'm trying to write this quickly since I am at work.

Any insight you might have would be much appreciated.

thank you,

Kelli


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



Celiac.com Sponsor (A8-M):



gfpaperdoll Rookie

I am just finishing up my lunch & computer time!! But could you post what you are eating?

Moondanse Explorer
I am just finishing up my lunch & computer time!! But could you post what you are eating?

Oh geez - here's a high-level look in to things I might eat:

Envirokidz Amazon Flakes

Health Valley Rice Crunch Ems

Bananas (at least one every day)

Stoneyfield Farm Organic Fat Free Yogurt

Chicken

Beef

Gluten Free Pasta (Glutano Tagliatelle, Biaglut spaghetti, Trader Joe's Brown Rice Pasta)

Potato (mashed/baked)

Green Beans (Del Monte)

Peas (La Seuer)

Carrots (store brand or fresh)

Almond Milk

Vitamin Water

Water

Green Tea (Good Earth)

Tazo Tea (Passion)

Hard Boiled Eggs

Gluten Free Bread (Whole Foods)

Gluten Free English Muffin

Ben & Jerry's Phish Food

Nestle Sno Caps

Rice Chips (Lundberg)

Shredded Cheese - brand varies, but I only buy bags that have allergen statements and identify ingredients

Moondanse Explorer

I got my results from the doctor on all the other tests I had done. They seem to add some insight:

Allergies (food only): cheese, egg white, egg yolk, garlic, milk, wheat, food molds (really high)

All news to me, though I had my suspicions. I've had skin prick allergy testing done, but this was MAST testing and they did the delayed IgG testing, which was more telling.

Vitamin D deficient and low DHEA

Absolutely no detectable Lactobacillus bacteria in my gut - not good

An overgrowth of miscellaneous bacteria

Archived

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

  • 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. - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Have Tru Joy Sweets Choco Chews been discontinued??

    2. - Jmartes71 replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

    3. - Wheatwacked replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Have Tru Joy Sweets Choco Chews been discontinued??

    4. - Theresa2407 replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

    5. - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Have Tru Joy Sweets Choco Chews been discontinued??

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,266
    • Most Online (within 30 mins)
      7,748

    Barbara lynn
    Newest Member
    Barbara lynn
    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)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      But M&M's contain milk, and would not be at all like a Tootsie Roll.
    • Jmartes71
      I appreciate you validating me because medical is an issue and it's not ok at all they they do this. Some days I just want to call the news media and just call out these doctors especially when they are supposed to be specialist Downplaying when gluten-free when they should know gluten-free is false negative. Now dealing with other issues and still crickets for disability because I show no signs of celiac BECAUSE IM GLUTENFREE! Actively dealing with sibo and skin issues.Depression is the key because thats all they know, im depressed because medical has caused it because of my celiac and related issues. I should have never ever been employed as a bus driver.After 3 years still healing and ZERO income desperately trying to get better but no careteam for celiac other than stay away frim wheat! Now im having care because my head is affected either ms or meningioma in go in tomorrow again for more scans.I know im slowly dying and im looking like a disability chaser
    • Wheatwacked
      M&M Peanuts. About the same calories and sugar while M&M Peanuts have fiber, potassium, iron and protein that Tootsie Rolls ("We are currently producing more than 50 million Tootsie Rolls each day.") don't. Click the links to compare nutritional values.  Both are made with sugar, not high fructose corn syrup.  I use them as a gluten free substitute for a peanut butter sandwich.  Try her on grass fed, pasture fed milk. While I get heartburn at night from commercial dairy milk, I do not from 'grassmilk'.     
    • Theresa2407
      I see it everyday on my feeds.  They go out and buy gluten-free processed products and wonder why they can't heal their guts.  I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field.  Some days I would just like to scream.  So much better when we had support groups and being able to teach them properly. I just had an EMA blood test because I haven't had one since my Doctor moved away.  Got test results today, doctor ordered a D3 vitamin test.  Now you know what  type of doctors we have.  Now I will have to pay for this test because she just tested my D3 end of December, and still have no idea about my EMA.    
    • Scott Adams
      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
×
×
  • 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.