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Follow-up Biopsy Results

Moondanse

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Moondanse Explorer
Moondanse
Posted

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

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gfpaperdoll Rookie
gfpaperdoll
Posted

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

Moondanse Explorer
Moondanse
Posted
  • Author
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
Moondanse
Posted
  • Author

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

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    • trents
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      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
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      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
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      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
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