2 Year Follow-Up Enteroscopy 0

[alevoy18 1]

Hi everyone,

After two years gluten free, my tTG went through the roof. It was initially 28 (range <10) in 2009, then it was 26 (range <10) in 2010 and now it is 186 (range <10). I had a scope this morning with an extension on it to look further in the small bowel (called a Enteroscopy). The initial results are below. The doctor came and spoke to me. He said my results showed text book advanced celiac and will likely show total villous atrophy. When I was original diagnosed, I was at Marsh 3b (subtotal atrophy). He said when the biopsy results come back, he will also send them to another hospital for CD3/CD4 staining. He said the odds of occult lymphoma or refractory sprue are low, but he can't rule anything out until the biopsy comes back. I don't understand, if there was no tumor or mass, how could lymphoma even still be an option? Does anybody know anything about CD3/CD4? Thanks a lot!

Procedure Results:

- Normal esophagus appearance

- Normal stomach appear (1 biopsy taken)

- Abnormal small bowel appearance

- mucosal atrophy

- "cracked cement" appearance

- mucosal scalloping

- mucosal ridging

- 5 biopsies taken

- 0 mass lessons found

Diagnosis/Treatment:

Need to rule out refractory sprue

Biopsies taken for CD3/CD4 staining

[ravenwoodglass 1,181]

Is there anything that has changed in the last year? Any new scripts (generics need to be rechecked at each refill) or supplements, are you eating at restaurants more, are you doing any home remodeling or gotten a new craft hobby or pet? Changed any toiletries or makeup or gotten a new gluten eating significant other? I am really hopeing for you that you are somehow getting glutened rather than dealing with refractory celiac. Whichever it turns out to be I hope you are feeling better and those numbers go down soon.

[cyberprof 62]

Alevoy, Raven asks good questions.

Follow-up questions - What are you eating? Can you give us a sample day's worth of food?

[Roda 186]

You could be super sensitive and reacting to gluten free foods that most tolerate. There are some on here that deal with this and may have some suggestions. Do you eat gluten free oats? About 10% of celiacs have problems with pure oats causing the same issues as gluten. You also have to watch out for gluten free oat contamination in your gluten free foods. I unfortunately fall in that category.

[alevoy18 1]

Thanks everyone for your responses. To answer your questions,

First, I apologize, it has been 6 months since my last tTG, not one year (I just looked it up).

Pills: The only new pill is my Cortisone for adrenal insufficiency. I have started cortisone due to my adrenal testing starting to show signs of failing, it is early but my ACTH was high, 24 hour urine free cortisol low, serum am cortisol was low-normal but I also had a fasting blood sugar of 44 which should of caused the cortisol to spike. All in all, I was started on 37.5mg of cortisone daily. I checked with pharmacy and this was supposed to be safe (they know of my issue and are supposed to check for me regularly).

Supplements: No, nothing new since I was diagnosed. All Jamison gluten-free vitamins since 2009.

Restaurants: I initially ate out at restaurants that had gluten-free options around 1 time a month when first diagnosed, but I don't eat out anymore since my test 6 months ago was unchanged. So I have gone less in the last 6 months than previous tests.

Remodeling: Once again, I haven't done remodeling since year one of diagnosis when I redid the basement.

Pets/Hobbies: Same pets over last 5 years and no new hobbies I can think of.

Spouse: She's been a thorn in my side for the last 5 years, so nothing new there :-)~ jk

Makeup: I'm male, so no makeup, except on weekends...nah no makeup ;-)

Oats: I have never risked it.

Food Guide

-------------

I am a very very boring eater, I will eat the same foods for a year and not change because they are safe. This is a basic day for me and it has been that way for a couple years now.

Breakfast: Nature's Path gluten-free cereal (no oats at all)

Lunch: Some vegetables like broccoli with chicken breast or other protein (sometimes rice).

Dinner: Something like a sweet potato, corn on the cob, salad (made by me) or other vegetable with a starch like rice or rice pasta and a protein from the freezer (chicken breast, fish, steak, pork chops)

Snacks: Fruit, homemade gluten free cookies or treats made from Bob Red Mills Soy Flour and very rarely gluten-free cookies/chips.

Drinks: Diet Pepsi, Coffee (100% coffee verified gluten free) and water usually

That is just it, over the last 6 months I cracked down on anything that might cause CC because of my last tTG not going down. I was expecting to see an improvement or at worst, another 20ish test. THen the almost 200 tTG came and thought maybe that was a mistake, but nope, the enteroscopy shows worse damage..so confused.

Oh yeah, I almost meant to mention that I don't have any symptoms. The only reason my gastro did the repeat enteroscopy is because I went from 155lbs down to 133lbs in 2 months (5' 8" male - 25 years old) and my vitamin levels were dropping fast (B12 went from 270 to 135, slightly anemic, ferritin down from 90 to 40). No Diarrhea, no stomach pains, no gas. I had all this pre-diagnosis, but none now. How can I have total villous atrophy with no diarrhea?? So confusing

Thanks everyone!

[cyberprof 62]

alevoy, my questions (like Roda) were in order to determine if you might be amoung those who are more sensitive to trace amounts. I read an article lately that those who appear to have refractory celiac (that is, continue to have high test results and flat villi) while on a gluten-free diet are instead extremely sensitive to trace amounts.

The way I understand it is that under the 20ppm threashhold, something that is gluten-free can still have gluten. Eat one piece of bread (with say 5ppm) and you'll be ok. Eat 20 pieces of gluten-free bread and you'll get more than a trace amount. So the idea would be to eliminate the possibility.

So you don't have much to lose by trying to be very strict. Not fun (but better than drugs or the alternative) but here goes:

No gluten-free flours, no cereals. Some people look at their rice before cooking and find other grains in it, so be very careful. Eat potatoes that you scrub. No pasta. No gluten-free treats unless they are grain-free. Don't eat out. Don't eat food not prepared by you. Don't use the microwave at work.

Is your darling wife gluten-free? (Glad you have a sense of humor.) If not, are you sure you're not getting CC? Microwaves, tupperware, colanders, cutting boards, wooden spoons, toaster, teflon pans all need to be replaced. Door handles? Do you touch the cabinet knob, door handle or oven handle and then touch your food? I wash my hands and then don't touch anything else while preparing my food. Does your wife bake? If so, she should cease gluten baking at your house. Has the sugar bowl been contaminated?

Pets? Are you feeding them gluten-free dog/cat food? Even if you're not handling it, it could be a problem.

Good luck. I hope it works for you.

[Roda 186]

You still could be sensitive to oats. I first had gluten free oats (Bobs Red Mill) after 7 months gluten free. I reacted horrible so I have never eaten them again. Other than that episode I was fine for a little over a year. Then new symptoms started. I thought it was my gallbladder (to some extent it was and still bothers me some now). I had a repeat scope that showed what is listed in my sig. Problems continued after ulcer healed. My doc wanted to put me on steroids but instead I decided on a further elimination diet and also was prescribed creon. I ditched any and all gluten free products. Funny, almost ALL of my meals/flours were Bobs Red Mill and I never gave it a thought that there could be oat cc from them producing gluten free oats. It wasn't an immediate reaction like when I actually ate the oats, rather a slow build up over a year when the new symptoms started. I ended up miserable for 8 months last year before I discovered the oat cc problem. I now only eat products that do not produce/use gluten free oats. The only exception is Udi's products and I contacted them and they produce their bread in a seperate room in the same plant as their oats/granola so their is no cc risk from them. There are a lot of people that have problems with Bobs Red Mill.

[Skylark 935]

First, as well as checking again for hidden sources of gluten, if I were you I would immediately eliminate all dairy (and foods with casein) and consider eliminating all grains. Dairy is well documented to cross-react with celiac antibodies. Non-gluten grains don't have as much research but a lot of celiacs report feeling better grain-free. Coffee is another that folks on the board and Cyrex labs have identified as a potential problem. You can always try adding foods back if you can get the TTG down.

There is a cross-reactivity test at Cyrex you and your doctor can consider. The problem is, this sort of testing can be inaccurate. It could give you some ideas about what to eliminate, but with the intestinal damage you might just come up positive to everything because of leaky gut issues.

http://www.cyrexlabs.com/CyrexTestsArrays/tabid/136/Default.aspx

You asked about CD3/CD4 and lymphoma. Your doctor is being conservative, and checking the types of T lymphocytes that are in your biopsy. As your doctor said, enteropathy associated T-cell lymphoma (EATL) is extremely rare but when it appears it tends to happen in people with refractory celiac and it is a dangerous cancer. Since there is no mass or tumor, the CD3/CD4 testing is probably to help him to decide how carefully to watch you. There are ratios of CD3+/CD4- cells that predispose to EATL, though I'm a little fuzzy on the details. (The immunological literature is hard for me to read.)