Comments Please

[KVD]

All-

I am a brand spank'n newbie , but I've followed these messages boards for a number of weeks. I've gotten to a point where I need your help, so here it is:

Since I was a child, I have experienced just about all the celiac disease symptoms that everyone has described on these boards (gas, bloating, diarrhea, cramping, dental problems, fatigue, weakness, depression, yada, yada, yada), and I have experienced the same frustrations while trying to determine exactly what the cause may be (what is the diagnosis du jour? Is it IBS, lactose intolerance, or deression? Take your pick). After this year's latest abdominal and mental (sounds funny, doesn't it?) troubles, I decided to pull all the stops. I did a bit of research, found out about celiac disease, and I asked my GI to test me for celiac disease. After listening to my latest symptoms, he agreed to do the blood test. We didn't talk to much about it, so I was not able to judge the extent of his knowledge of celiac disease. Soon after giving blood for the test, my GI's office called me to tell me that I tested positive. While visiting with my GI today, he explained that there were three separate blood tests performed. Only one of the blood tests came back positive. In his opinion, the test that came back positive was the least important of them all. Also in his opinion, the non-gastrointestinal symptoms such as fatigue and "head fog" are too vague to evaluate as symptoms of celiac disease. Fatigue and head fog have been my worst symptoms lately. I thought fatigue was one of the top symptoms of celiac disease!? I did not like that he downplayed them. He said that I likely do not have celiac disease. However, given that one blood test was positive, he would like to do the intestinal biopsy. I had already decided that I wanted the biopsy, so I was glad to hear that he wanted to continue checking for celiac disease. I'm anxious to know whether or not I have celiac disease, but I'll have to wait. In the meantime, I'm supposed to pound as much gluten as I can (in preparation of the biopsy). I've been dragging for a long time now, so I suppose I can eat gluten a little longer and, assuming gluten is the cause of my symptoms, keep making myself feel the way I do (sounds a bit masochistic, but masochistic with a purpose - ha!) I think I will also get a second opinion at UMD Center for celiac disease, and get tested by Enterolab. Is all that overkill? Now, below is what I need comments on. I've listed the three tests that were done along with the results (scores). What are these, and what is the significance of the one that is positive? Is any one less/more compelling than the another?

1) Gliadin AB (IGG, IGA); tTG IGA, Tissue Transglutaminase AB IGA: 5

2) Gliadin AB IGG: 65 H

3) Gliadin AB IGA: 12

Also, what are these other two test:

1) Anti-nuclear AB W/RFX, Anti-nuclear AB, EIA: POSITIVE

2) Anti-nuclear AB Titer-Pattern, Anti-nuclear AB Titer: 1:80

Thanks for reading, and thanks for your feedback!!

[darlindeb25]

in my opinion, KVD--get started on the gluten free diet--you already had one positive on the blood work--your villi will not instantly repair and if the biopsy is soon, it will still show problems if you go gluten-free now---i would get myself on the road to recovery----will the results of the biopsy make any difference to you as in whether you will go gluten free or not----gluten-free can not hurt you, none of us need gluten in our diets and feeling better is what counts--i have never been doctor diagnosed with celiacs and i dont need to be--i will be gluten-free for the rest of my life---my sister is doctor diagnosed and my dad was just told to go gluten-free too--there is no doubt in my mind that i am celiac or at the very least gluten intolerant and now i have found i have to limit my soy too--i also have raynauds----like i said--only my opinion, but if i was you, i would be going gluten-free now deb

[cdobbs]

i agree with deb. over the last year i had been showing celiac disease symptoms but the only person who kinda listened was my gyno but we thought it was hormonal. when my father came ack biopsy confirmed, mysellf and my two chldren were tested. myself and 2yr old came back positive with celiac disease and my 5 yr old came back sensitive. when i first started the diet it was rough on my body. i lost an additional 15lbs and felt like crap but after about 3 months i started feeling way better. my 2yr old didnt have any of the symptoms except for the huge tummy and skinny arms. he is now looking 10 times better. if you go gluten-free and feel better even wih out being confirmed you should stick with it. just the change in myself and kids will make me stay gluten-free. i cheated about 3wks ago. my inlaws always make goulosh soup for the holidays and i just had to have it. well i was sick for a week. cured that problem of cheating real quick. goodluck and i hope some relief comes to you soon

christi

[lovegrov]

I disagree on stopping the gluten. If you're going to have a biopsy stay with the gluten.

The villi might not heal completely but it's possible they'll heal enopugh that this doctor will say "Oh, that's only slight damage. That's not celiac."

Fatigue is indeed THE most common symptom, not diarrhea or any of that other stuff.

The Igg is the least specific bloodtest for celiac disease. But I know people who have been positive on just this and then have had a positive biopsy, or they went gluten-free and all their problems went away.

richard

[tarnalberry]

I also disagree with stopping the gluten. No one knows how fast your system will heal, how much damage your GI wants to see on the slides to count as celiac disease, and how many biopsies he'll actually take when he's in there. If you're going to err on the side of overkill (not always a bad thing), then this is one of those times.

The problem with the blood tests is that I didn't see a total IgA taken. You have two low specific IgA tests, and one elevated specific IgG test. But what if you are IgA deficient in general (which is true for something like 20%? of celiacs)? Then the low IgA tests can't tell you anything because you couldn't be compared to baseline.

I do think you're plan is overkill, but you do what you have to do, and if it's not breaking the bank and leads you to where you need to be, that's what matters.

[Melanie]

Tie-breaker!

I wouldn't start a gluten free diet until after the biopsy yet either. Many Celiacs don't test positive via a biopsy. You have HUGE GI surface area. They just take a few little samples so unless your villi are really damage, you may not get a positive biopsy and you may even get an inconclusive one. So I would eat as much gluten as possible until after the biopsy because then your biopsy will be as accurate as possible and you won't have to wonder if you messed it up by going gluten-free early.

[gf4life]

Do NOT stop eating gluten until after your biopsy. It will affect the results. The lining of the intestines repairs relatively quickly and you will not get accurate results if you are gluten free even a week before the biopsy!

You are not alone in your symptoms or your test results. All three of my kids tested positive on the IgG antibodies only. I'm like you, I've had these vague symptoms all of my life. One by one the doctors dismiss them, but if you put them all together they certainly point to Celiac. I had all the testing done. And I do mean all. My primary doctor was looking at my chart the other day and said the only test I haven't had done is an abdominal CT! And he is thinking about ordering one, since I am having problems with elevated liver enzymes and pain (mild to severe) that comes and goes in my liver area and a severe headache that lasted for 3 weeks. The ER doctor thought it was my gallbladder, even though I told him I haven't had a GB for 5 years! Only the Enterolab tests came back positive. Although I still am considering having my biopsy slides reviewed by a better doctor who specializes in celiac disease. I'm not sure it was actually negative. My doctor went inconvinced that she would not to find anything, so I don't really trust her. For all I know she only took one tissue sample...even though she said she took "plenty".

God bless,

Mariann

[darlindeb25]

KVD-- none of our answers are right or wrong--if financially you can afford the testing, then go for it--i do know that many celiacs were told from the biospy that they were not celiacs --you can be gluten intolerant too and not full blown celiac yet--nothing is overkill if it relieves your mind-- you do what you have to do for you--i didnt have medical insurance and no money for testing--someday i would like to be tested by enterolab, just to be sure of what exactly i should stay away from--trial and error isnt so much fun, but i will never go back to gluten--my sister was tested and has full blown celiacs and she told me to go gluten-free and see if it helps--we do not need gluten in our lives to survive--i do not need an official diagnosis to know i am at the very least gluten intolerant if not celiac--as i said--my dad was just doctor diagnosed to and if now feeling so much better--my odds just keep increasing that i am celiac------deb

[KVD]

Thanks, this is all very helpful. For the next few weeks I'll be filling my diet to the brim with gluten. I'm a young guy, so I'll have plenty of opportunities to utilize the poison of, if I dare say the b word to you all, beer . The funny thing is that I have always felt quite a drag the day after having just one beer. I'll just have to suck it up!! I'll definitely utilize Enterolab, but I don't know if I'll bring UMD into the picture...maybe I'll have the tissue from my biospy results sent there - if that's an option.

Thanks again. I'll keep you posted.

[mela14]

I just posted with the same scenario. My blood test results were similar to yours. In addition, I also have Primary Immune Deficency and have an extremely low IGA all the time. Which probably makes the other tests seem like there is no problem. I started monthly immunoglobulin infusions about a year ago but complained to my immunologist that I was constantly getting viruses with diahrea. he didn't know what was wrong.

The though of me going all out to eat gluten for a biospy would probably land me in bed or in the hosptial. I would be deathly ill and I don't thnk it would be worth it for me.

I'm not sure if you get all the GI syptoms but that would be a factor for me. I am also finding that I am soy, peanut and egg intolerant. Not sure how this all happened but I do know that I feel better when I don't eat these foods as I become immediately ill after ingesting them.

So, not sure if this helped you but would love to know how you make out. Good luck.

mel

[nicolesmom]

KVD,

With only a positive IgG it is possible you are glten sensitive without haveing any damage to your intestines at this point, so don't be surprised if your biopsy comes back negative. The gliadin Iga and TTg IgA will only come back positive once damage has occurred, so these are the blood tests the docs use for diagnosis. (Unless, like stated above, you have a total IgA defficiency)

Just an interesting note to all, one of the reference labs my facility uses actually has lower cut off values for the celiac panel. You can look up www.specialtylabs.com and you will see thier reference ranges for the gliadin IgA and the TTg IgA are less than 5! Why is this when they use the same methodology as the other labs who state <20 as being negative? I'm not sure so I have sent them an e-mail and have asked for supporting documentation. I am very curious and will post when I receive the info.

My daughter tested a 68 for the IgG, but like you is only positive for the other markers according to Specialty labs' guidelines. Shee feels better gluten free, but can't stay on it for any length of time due to visitation at her dad's, so I am very anxious to find documentation stating she could benefit from a gluten-free diet, just so her dad will also agree to try it.

Please let us know if they find celiac with the biopsy, I know there are others in the same boat who would like a definative answer about IgG only results.

Thanks, and good luck to you.

[KVD]

Hmmm....that's really interesting. Change the rules, and the outcome of the game changes quite a bit! It will be good to know what SpecialtyLabs has to say.

Mel, I can easily assume what a Primary Immune Deficiency is, but what is it exactly - causes, symptoms, etc? How did you find out that you have this condition?

Here's a more general question (to all): how would I know if I am IGA deficient?

[tom]

WHy not stop the gluten, maybe feel a LOT better and do the genetic test.

[gf4life]

Nicolesmom, I would also be interested in hearing what Specialty Labs has to say. I had noticed that all the different labs seem to have different reference levels and was frustrated by that since some of my tests could then be considered positive, but I never got an answer from Specialty labs when I asked them this question. Maybe you will have better luck.

God bless,

Mariann