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Follow-up Biopsy Results


Moondanse

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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


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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

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    • Scott Adams
      I would pressure the lab to do the IgA control test for free so that you won't write a poor review about their testing services. You could get this done at any time, whether or not you are gluten-free, however, the celiac disease Tissue Transglutaminase tTG-IgA test must be done after you've been eating lots of gluten for around 6 weeks. This way you could salvage the results of your tTG-IgA test, as long as you were eating lots of gluten beforehand.
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      Given your strong reactions it would be wise not to eat things offered to you without reading the ingredient labels. It's possible there was indeed gluten or some allergen in the chocolates--barley malt is a common ingredient in some chocolates.
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      Yes, an IgG panel is the logical next step. However, you would still need to be consuming normal amounts of gluten to ensure valid IgG testing. Since it has only been a week that you have been off gluten, there is still likely time to restore antibodies to detectable levels before the blood draw. IgG antibody tests are not quite as specific for celiac disease as are the IGA tests but they are certainly valuable in the case of IGA deficiency. They also seem to have a little more "staying power" in the sense of detecting celiac disease in the case of those who may have already started a gluten-free diet as long as they haven't been on it for an extended period of time. But don't rely on that. Get back on gluten if you can possibly endure it if you intend to go forward with IgG testing. This might be helpful:   
    • SEQ
      Thanks @trents. I have exchanged some messages with the clinic today, and they are saying that the reason there is no result for the total IgA levels is because I don't have any. Apparently a negative result means that it does not appear as a line on the results at all. I am not sure I buy this, but it is what they are telling me. I am leaning more towards the theory that they didn't test it in the first place. But, working on the basis that the test result was zero, I asked what the next steps would be, given that I apparently have no IgA antibodies. They have asked if I now want to have a tTG-IgG and a DGP-IgG test. Is this really the next step if I have no total IgA?
    • trents
      IGA deficiency is a lot more common than we used to think but I can't give you a number. Doctors used to believe it only happened in children but we know better now. Every doctor should order, at the very minimum, total IGA and tTG-IGA. It may be true that you don't have to worry as much about cross contamination if you have NCGS but that is not a given. By the way, welcome to the forum, @SEQ!
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