Worth Retesting? I'm Absolutely Miserable

joyceelaine · August 19, 2009

Please help, I was tested 4 years ago for celiac and the results were negative, doctor said it was ibs which I've had all my life. However, for every day the last 2 years, I can count on one hand, the number of times I've had a bm without pain and cramping, and loose stools..This is ridiculous to have it every day, every day, every day.......

I had a colonoscopy and endoscopy in Jan of this year which were normal. Does an endoscopy always show the small intestine, or might it have only looked in my stomach?

Also, was the celiac testing adequate?

The tests were (tTG) AB, IGA - neg

Gliadin AB IGA - neg

IGA, serum - normal

Endomysial AB IGA - test not performed (TNP-reflex testing not required)

Endomysial AB titer - test not performed (")

(tTG) AB, IGG - test not performed (")

I hope someone can tell me why some tests were not performed, I have lots of other symptoms I won't go into now, but many of them point to autoimmune diseases, but every test always comes up negative. I have chronic lyme disease (actually 3 different co-infections) with intensive antibiotic treatment, but doubt it was cured.

nu-to-no-glu · August 19, 2009

joyceelaine said:
Please help, I was tested 4 years ago for celiac and the results were negative, doctor said it was ibs which I've had all my life. However, for every day the last 2 years, I can count on one hand, the number of times I've had a bm without pain and cramping, and loose stools..This is ridiculous to have it every day, every day, every day.......

I had a colonoscopy and endoscopy in Jan of this year which were normal. Does an endoscopy always show the small intestine, or might it have only looked in my stomach?

Also, was the celiac testing adequate?
The tests were (tTG) AB, IGA - neg
Gliadin AB IGA - neg
IGA, serum - normal
Endomysial AB IGA - test not performed (TNP-reflex testing not required)
Endomysial AB titer - test not performed (")
(tTG) AB, IGG - test not performed (")

I hope someone can tell me why some tests were not performed, I have lots of other symptoms I won't go into now, but many of them point to autoimmune diseases, but every test always comes up negative. I have chronic lyme disease (actually 3 different co-infections) with intensive antibiotic treatment, but doubt it was cured.

I totally understand your pain. I posted my story several days ago (you can check it out if you're interested), and I too am severely sick and miserable and can completely relate to your statement about counting normal BMs on one hand. I tested negative on the celiac blood tests and can't even get a Dr. to perform an endoscopy based on normal blood and stool tests. I am finally to the point where I am so miserable I am starting a gluten free diet to see how I feel. If there are positive results, then I know where I stand. No dr. would be able to discount the connection then, with or without standard proof! (I did call my drs office and let them know what I was doing and they were supportive, but still no mention of endoscopy).

You could also check out enterolab. I am considering ordering the test from them to confirm my suspisions since I can't get a dr. to help diagnose me. It's rather pricey, but I've read many positive things on here about it.

It might be weird to say this, but if you have suspisions even after the negative tests, i think chances are you might still want to give the diet a try and will see positive results. (listen to me giving you advice when I am in the same boat) I have never been more sure about anything in my life, despite the fact that multiple drs tell me there is nothing "technically" wrong with me. Good luck.

ravenwoodglass · August 19, 2009

You could get retested or you could simply give the diet a try. As mentioned you could also go with Enterolab testing, if you choose to do that you can go ahead and start the diet while your waiting for the kit to come as you can be gluten free for a while and still have an accurate test.

If you do choose to retest with blood and enso do keep eating gluten till those tests are done and the day you finish the last of the tests get on the diet. You don't have to wait for the test results. There are unfortunately too many times that the tests are a false negative so the diet should still be done for a bit to see if it helps regardless of test results.

Fiddle-Faddle · August 20, 2009

Over the past few years, there have been many reports on this forum from members who had every symptom of celiac--INCLUDING positive dietary respons--but had negative tests.

In your case, it's difficult to tell whether or not the tests they did run were complete. Endoscopies do not necessarily go to the small intestine; I had two that didn't, because they weren't looking for celiac. They absolutely should have run the endomysial tests for you. But since they didn't, it seems to me that the first priority is for you to feel better, which means ruling out celiac/gluten intolerance by trying the diet.

There have also been a surprisingly large number of members of this board who tested positive for Lyme disease, including quite a few who were diagnosed with chronic Lyme. That's a very, very difficult one to deal with, and apparently, it can cause a supposedly non-celiac kind of gluten intolerance. Recently I did read that in some cases, the patients actually sero-converted to a celiac-specific gluten reaction, but I can't remember where I saw that.

Either way, it sounds like gluten-free and dairy-free might be your first step to feeling better; perhaps that would also help the Lyme and co- infection treatments to be more effective.

joyceelaine · August 20, 2009

Thank you both for your replies. I have in fact started a gluten-free diet as of yesterday's posting but I don't know how well I'll do. I thought it wouldn't be too bad at first, but last night I was reading about how hamburgers can't even touch the bun(I thought if I would just eat a hamburger w/o the bun I'd be okay), cross contamination, etc. and It will be a lot harder than I thought. I eat out a lot (I hate to cook) and am a picky eater. If I did have celiac, and eliminated a good portion of gluten from my diet would it help?, or do you have to be 100% gluten-free for it to help? So I'm thinking I should go ahead and get the bloodwork again.

ravenwoodglass · August 20, 2009

joyceelaine said:
Thank you both for your replies. I have in fact started a gluten-free diet as of yesterday's posting but I don't know how well I'll do. I thought it wouldn't be too bad at first, but last night I was reading about how hamburgers can't even touch the bun(I thought if I would just eat a hamburger w/o the bun I'd be okay), cross contamination, etc. and It will be a lot harder than I thought. I eat out a lot (I hate to cook) and am a picky eater. If I did have celiac, and eliminated a good portion of gluten from my diet would it help?, or do you have to be 100% gluten-free for it to help? So I'm thinking I should go ahead and get the bloodwork again.

If you have celiac you have to be 100% gluten free to stop the antibody reaction. It is the antibodies that cause the issues and even a small amount of gluten will keep them going. It can be hard especially at first. I would go ahead and get the blood work done again and then go ahead and give the diet a good shot. It can seem overwhelming when you first start but if you are celiac your improved health and quality of life will make it worth the trouble.

momxyz · August 20, 2009

I am new to the diet too and it does feel like I am spending more time in the kitchen. But I do think its worth it.

Just go one day at a time and don't let all the details overwhelm you. Just like your car can't go from zero to 60 in 5 seconds, you won't be able to go 100% gluten free in a single day. It's a learning process.

In my family's case, I started with the very obvious things like you are doing - no bread or obvious wheat products - for my daughter and myself. After the first week or so began studying labels in the pantry... and got some gluten free cereal from a local organic food store.

Bit by bit we are figuring out what is good for us and what is not. We've slipped up a few times - both inadvertently and in moments of weakness. We realize the mistakes but don't beat ourselves or each other over it... just refocus and keep going.

It's been almost five weeks now, and I am just beginning to look at possible cross contamination issues in my kitchen, as we aren't expecting the other family members to change their eating habits. Although, my daughter made a totally awesome gluten free pizza that my husband raved about, and he now likes the brown rice pasta better than the regular kind.

I know you said you hate to cook. I don't hate to cook, I just don't like spending the time doing it when I have so many other things I want/need to do. But I have had a real sense of accomplishment when I have made gluten-free things that really do taste good!

hang in there... Rome wasn't built in a day.

ang1e0251 · August 20, 2009

When you get tested, ask for each individual test to be run. It is my understanding that some labs will just not run all the testing if certain ones aren't positive. Someone correct me if I misunderstood that one.

I know you said you don't like to cook but going gluten free, you really are going to have to prepare some meals. Many people have reported that they actually found they enjoyed it more than they expected. You really can start simply. We can help, if you'll let us.

joyceelaine · August 21, 2009

Thanks everyone, your answers were extremely helpful!

Fiddlefaddle- Thanks for clearing that up about the endoscopy, I don't think the dr was looking in the small intestine for celiac since he's the one who had ordered the blood test and said they were negative. Also that was very interesting about lyme disease causing gluten intolerance. So many things seem interconnected, especially where lyme is concerned. But I'm done with the lyme treatments for now. I tried just about every oral antibiotic in the book, then went to intramuscular injections, and finally intravenous for 2 months til the insurance ran out. Here's something interesting, when I was on amoxicillan I had a peak and trough test to see how well my body was absorbing it, and the amoxicillan level in my body was undetectable. They thought I didn't prepare properly so they made me take it again, with the same result. Does this sound like the malabsorption problems celiacs have that I've been reading about?

Ravenwoodglass- thanks for clearing up my confusion about whether a little gluten would be ok. I am definately trying to go 100%. Just went shopping today with my(not so) little gluten-free list, and picked a few things up in the gluten-free aisle, and what I wasn't sure about, came home and looked it up online.

ang1e0251- your advice was also very good. I will definately ask for all tests there are, especially the ones that weren't done last time. And I actually made a home cooked meal tonight that I'm pretty sure was gluten free, and am cooking again tomorrow night. I actually found some gluten-free choclate cookies in the gluten-free aisle and am thrilled that they taste so good!(I'm a hopeless chocoholic)

momxyz-thanks for your support also.I am trying to follow the guidelined 100%, but don't know about all the little obscure ways gluten can get into your diet, so that will my biggest challenge.

I really appreciate eveyone taking the time to help me. Could you bear with me for one more question? When I get the bloodwork done,I've heard 2 different sides to this, do I go back off the gluten-free diet and eat normally for the test like some say?, or do I keep eating the same gluten-free diet once I've started it?, since gluten stays in your system for a few months, even after you've stopped eating it.