Quote:

Originally Posted by jccgf Remember when you having the testing done in November to insist they include the anti-gliadin antibodies as part of the testing.

Sorry for the redundant questions (I'm not the sharpest tool in the shed do to PN drugs) and without going into details I think this is going to be a bit of a battle for me to get done from the doctor so I want to make sure I get it right.

1. Is the "anti-gliadin antibodies" one of the ones listed in the quote below?
2. Do I need all 4 tests listed below done?
3. Is one of the ones listed below the "small intestine biopsy"? From what I've read the biopsy is done later to confirm intolerance, right?

Quote:

tissue transglutaminase-IgA or tTG-IgA Antigliadin IgG or AGA-IgG Antigliadin IGA or AGA-IgA Total IGA

Sorry but one more question, What is better the stool or the blood tests?

Thanks so much for your help folks!

No problem.... this all gets quite confusing in regard to testing... partly because no test is perfect!

Here is a good thing to take to your doctor, as it comes straight from the celiac center at Maryland, run by Dr. Fasano, a leader in celiac research.

The University of Maryland Center for Celiac Research still includes the antigliadin IgA and IgG tests. If your doctor doesn't want to include them... here is your best source! Dr. Fasano, who heads this center, is world reknown for his work with celiac disease.
Is the "anti-gliadin antibodies" one of the ones listed in the quote below?
YES. Antigliadin IgA, IgG
Do I need all 4 tests listed below done?
YES!!!!! Some doctors will reduce it to the single anti-tTG case which is much more specific to celiac disease. A positive result is almost a sure bet that they would find intestinal damage on biopsy. However, particularly when neurological disease is involved, the antigliadin antibodies may bear more meaning. They are an indicator of gluten sensitivity, and you can have gluten sensitive neurological disease without having celiac disease (villous atrophy on intestinal biopsy)
Is one of the ones listed below the "small intestine biopsy"? From what I've read the biopsy is done later to confirm intolerance, right?
If someone has a positive result on the antibody tests above, then they will generally follow up with an intestinal biopsy, take samples, and look for villous atrophy microscopically.










If someone doesn't have medical insurance, they should remember that you don't need a doctor's prescription or permission to make dietary changes. Sometimes, a dietary trial may be the best test of all. If someone can swing the testing, though, I think it makes sense to do it. And, particularly with neurological symptoms, it may take a long time to notice improvement (up to a year or more)... and some people want a little more to go on. Gastrointestinal symptoms usually respond within 3-6 months, at least some initial signs of improvement. My daughter was having neurological symptoms that did actually resolve within 3-6 months... it all really depends upon the type, severity, and duration of neurological symptoms prior to GFD.

Here is my testing story in a nutshell.

Two different doctors from two very different practices ran blood tests on me for celiac. Both came back negative. One doctor still felt strongly that I was celiac and wanted me to try the diet. (His daughter is celiac and he has a brother- in- law who was diagnosed with it later in life.) He admitted the biopsy is the gold standard for confirming the blood test and for reasons known only to him he didn't want to put me through that test. Maybe he was trying to spare me an insurance headache. I don't know.

Anyway, I am stubborn and needed some concrete medical something to get me to try such a restrictive diet. I found Enterolab on the internet, tested positive, and haven't looked back.

I will say I tested positive by a very, very small amount with the stool test. It makes sense to me that the stool would be more sensitive.

Just one celiac's story...

Good luck with all of this. I sure do understand how frustrating it is.

Thanks for your help, it's greatly appreciated!!!

I guess I need to decide what direction to go from here. If I spend the money on blood tests and they are negative then I will have to come up with more money for the stool tests. I was thinking of having the complete stool test which is around 400 bucks. Ouch!

I guess the first place to start here is to call my insurance company and see what they will cover as part of a physical exam.

When I went gluten free, I had no insurance, and no money for testing. My sister had been diagnosed celiac 4 months before, and there was no dount in either of our minds that gluten free would help me too. That was 9 years ago. I do wish I had the money then to know if I have celiac or not, but there has never been any doubt in my mind that gluten is my enemy. A year or so after I went gluten free, a university in Chicago was asking for people to test for celiac, they called my sis and asked if she knew anyone who wanted to be tested. She told them about me, they told her I would have to eat gluten for at least 6 weeks for the testing. She told them there isn't enough money in this world to make me eat gluten again...she's right. We both had been so ill for so long...both with diarrhea all the time, she losing way too much weight, me gaining, her iron deficient, me with neurological symptoms...no doubt we both had celiac.

My neuro had a celiac panel done last year. Of course, after 8 years gluten free, the blood work was not going to show high levels from gluten. The gene testing came back double DQ1, which to most doctors means celiac is not possible. Some doctors aren't so sure that genes make a difference. At any rate, I am gluten intolerant, and super sensitive. I no longer eat any grains because of the CC problems.

Has your neurologist ever tested your B12 level? By the time I finally got to this neuro, I had been taking B12 for over 3 years, so testing now can't be conclusive to a deficiency. In June he told me to continue with the 5000mcg of B12 I take daily, my neuropathy is finally showing some improvement.

While many gastroenterologists believe that only peopel with HLA-DQ2 or DQ8 genetic profile are predisposed to developing celiac, there are some researchers, notably Dr. Hadjivassiliou, who think that the DQ1 genetic profile is often present in those who suffer neurological symptoms from gluten sensitivity, often without intestinal symptoms (no "frank Celiac") and whose only serological evidence may be an elevated anti-gliadin reading.

More can be found on this in Cara's Gluten File (which is in the Useful Websites section at the top of this forum).

Interesting, I do have diarrhea allot. I have never had any problem losing weight only keeping it down. I can' say I have really felt ill all the time but I'm achy allot. My joints etc. are always achy.

I have been back on b12 now for a few months and I have taken it in the past and when I did my numbers went up. In 2003 it was 316 and in 2004 it was 389. Right now I'm on a huge supplement list hoping it will help in time. I'm going to try it for a year. Eating my vary best, exercising and keeping my weight down along with the supplements to see if I improve.

I ordered the "Stool Test for Gluten Sensitivity" test Friday afternoon so I will know in about 3 weeks if I'm at least sensitive.

When my PCP first tested my B12 level, I was taking 1000mcg of B12, and the level cam back 1237. Last June, my neuro tested my B12 level, I was and still do take 5000mcg daily, and the level came back at 1016. I have no idea where my level was when I first started taking B12. I do know, my neuropathy is finally showing some improvement after nearly 5 years, and my neuro said to keep taking it. That's good enough for me!

Hi Marty,

Don't EVER stop taking B12 again! And definitely aim for a level at the TOP of range, 900 to over the top, and keep it there. Forever! I didn't realize you had been that low. My level was 294 when I was dx'd B12 deficient, and I had some pretty substantial symptoms over a period of years. Even though it took many years before a doctor thought to check for it, I was lucky in that he realized that 294 (150-1100) was low enough to be causing me neurological symptoms. Not much different than your 316.

My opinion, based upon my personal experience and what I have read, is that your B12 has been TOO LOW and could definitely be contributing to your symptoms. When was the last time it was tested? 2004? Well, stick with it this time, and it wouldn't hurt to boost it to 2000-3000mcg daily, preferably methylcobalamin, until you are sure you are in the HIGH range. Then you can consider dropping it to 1000mcg as a maintenance dose forever (with a B12 test now and then to be certain you remain in the HIGH range).

Look forward to hearing your stool test results.

Cara

Cara your the first person to think that strongly about my B12. I've been on the boards and to many doc's for many years but honestly I can't say I've stayed on methy b12 for a constant year even. SAD! I'm in allot of pain most of the time (I'm at my desk at work with no shoes or socks on at present) so you would think that would be a motivator but I get discouraged and give up.

When I tested in 04 I was on B12 at the time so I'm really not even sure that's a correct number to what my B12 stores were. Actually I have a printed copy of an email from Rose in my folder here dated feb 03 so who knows what my B12 was before that because I was taking B12 than per her suggestion. I think over the years I had an abortion problem mainly from the amount of diet coke I drank. At the time I thought it was nice because I thought of it as a diet tool, everything went straight through me. I have no changed me ways giving up soda drinks all together, I don't drink or smoke I exercise allot and I'm trying to eat right along with taking a huge suppliment regimen that mrsD help me with.

The discouraging factor is in reality I will most likely never heal more 50% from where I'm at now but it's something I have to do for the rest of my life or it will keep progressing. It still my keep progressing unless if find the cause and that's probably several things. I reserved the book "Nutrients for neuropathy" from the library and it's in so I'm going to pick it up on my home today. I hope it's good!

THANKS SO MUCH FOR ALL YOUR HELP!