Testing Today...

[SLB5757]

Ok ... so to start my story:

About two months or so I ended a 3 month gluten free-trial. I was gluten free for three months and I will say that I was feeling much better. It still wasn't 100% though after 3 months soI seriously started doubting the diet and started consuming gluten again about a month or month and a half ago - regularly. I think the first week I was semi-OK, a few tummy issues here or there, but nothing to really speak of. I would account those initial pains to acid reflux usually since I take Nexium daily (my only daily medicine).

As the weeks continued, even into the second week of eating gluten again the familiar high left sided pain returned, I got constipated again, and I was starting to have random pains all over my stomach again with no rhyme or reason. It has gotten so bad in the last two weeks I swear it feels like I must be dying of cancer or some terrible disease to be in this much pain all day long. My stomach "gurgles" and I have belching/gas literally all day long. I have very painful bloating, and I am getting leg cramps so that I can't even sit through a movie at the theater with my boyfriend ;( I also have acne breakouts on my chin area on either side of my chin now and I was NEVER the type to break out. My biggest concern is of course the belching/pain/constant gas issue. I can't get to sleep at night, and when I make it to the office at 8 AM I am find myself wondering what I could possible eat that will not cause me further discomfort. I can't say that there is any safe food right now because my tummy seems so darned inflamed It's certainly in a hyperactive state (and I am in an emotional state because this is all happening again.

OK - so needless to say I called the doctor yesterday after multiple visits within the last two weeks (the doc says I have IBS and this will all go away when I am not under anymore stress...ummm OK) and begged him to re-do the celiac panel now that I have had gluten for a month and a half. It has been daily consumption and plenty of it.

Do you think a month and a half is enough for accurate tests. I he only ordered TTG and IGA tests, not total IGA - but it was listed wierd on the order form. I think it said Antigiladin AGA Assay(s) and Tissue transglutamate something Assay(s). He then ordered a specific IGE RAST for Wheat, Rye, Barley, Oats and something else. They took 6 vials of blood altogether saying they had to do each RAST separately.

Maybe if the Celiac tests do not show something he wants to rule out the others as specific allergens?? Idon't know but am praying for some clarity. The Nexium certainly doesn't help, and there are thousands of people who have the same stressors as me and do not have tummy issues so I don't really buy that excuse either:(

[ang1e0251]

You did the right thing in insisting on testing. The reason total IGA can be valuable is because some folks are IGA deficient. If you score low on total IGA, you probably will never have positive bloodwork for celiac disease.

The RAST tests are for allergies but I only know what I've read about them. It doesn't seem like they are that accurate. Kind of like celiac disease testing!

Here's what it boils down to. Your celiac panel could show positive. In that case your dr will probably order a biopsy. You will see a GI for that. You need to stay on gluten if you are going to have that test for it to be accurate. If you don't think you can last that long, you can ask your dr if he will dx based on your dietary response and you bloodwork.

Your celiac panel could be negative. There are reasons for that like IGA deficiency. Some people with celiac disease just can never test positive. It could mean you are gluten intolerant. No test can show that. At that point you have some decisions to make. You can insist on a biopsy that might reveal celiac disease. You might just forget any more tests and go back to eating gluten-free. Your body already told you that you need to eat that way. You could also do a gene test. A gene test cannot dx you with celiac disease but it can show that you might be genetically disposed to it. A lot to think about.

The allergy test cannot show celiac disease. An allergic response to wheat, rye or barley is a histamine response not an autoimmune response. You can actually have both; an allergy and celiac disease or GI.

I'm sorry to throw so much at you but you need a basic understanding of the options to make this decision with your dr who may not have as much info as you do.

[Lisa A]

Wow reading your post was a heckuva lot like reading about myself.

Is 6 weeks long enough for a gluten challenge? Maybe, maybe not.

I got the blood test for celiac disease at 6 weeks. It came back negative. I ate gluteny foods 6 more weeks although less enthusiastically as I was pretty sick of feeling sick. Then another blood test (this time 3 months in total). Again negative. I have read that three months ought to do it. I have also read that for some people with celiac disease it is not enough time or damage incurred to bring back the antibodies into your bloodstream. I have read that it can sometimes take years after being gluten-free to get a positive blood test. And the basic minimum is about 6 weeks.

I have basically been gluten free for the last 3 months but it took me a while to realize that when I am absolutely totally gluten free, I feel great! It only takes a crumb to ruin my stomach. Life is much better now and so much more difficult too.

If your tests all comes back negative don't think "well great I can eat wheat". All it means is you don't have total villous atrophy. Perhaps you have some villi damage. Perhaps none. Perhaps you have an allergy to wheat, or maybe you do have an immune system reaction, but it is a non-celiac variety. Doctors pretty much focus on those villi as if it's the only issue with gluten.

You know how good or bad you feel eating wheat/gluten. One thing you could try, if all the tests show nothing, is eat for a couple of weeks as if you actually have celiac, right down to avoiding toasters and other cross-contamination. I strongly believe that there are non-celiac gluten sensitive people out there who react just as badly to gluten as the celiacs do.

[SLB5757]

Thank you both for your responses

I have a little background on Celiac only because I have read and reread this site so many times. When I did the gluten free challenge for three months from about May through August, that is when I had testing done the first time - in my head I just feel like the negative results I got then were inaccurate. I am not pushing for a positive this time, but I figured I must consume gluten for at least 6 weeks to truly know if this is my issue - test or no test.

The Allergist I go to did the skin testing that showed my IGE response to Wheat, Rye, Barley and Oats at a 4+ and suggested I avoid it just based on that alone; even if Celiac wasnt an issue because it of course can cause anaphylaxis in extreme cases. I struggled with finding validity in the allergy testing because it showed that I was a 4+ to MANY thinks - even Corn and Carrots and Soy and Beans and about every nut and just so many fruits and veggies. I thought there was no way the tests could be accurate. I decided to keep eating all foods and try the Celiac testing one last time. My doc just threw the IGE RAST testing in there because he felt the blood for each would be more accurate then the skin testing they preformed.

Like you both said I guess I could or could not have celiac, could or could not be allergic to wheat or another allergen, or could be gluten intolerant. For all I know I have an ulcer or something...I really have my hands up in the air right now just praying they will figure it out.

I did have a scope done in 2006, and at that time it showed inflamation...they werent looking for celiac. That GI doc that I went to for the scope picked up and left the practice shortly after I had the test done, so I have had no follow up besides the family doc putting me on Nexium - which doesn't help.

I guess I lean to Celiac because my brother has the same stomach troubles and is probably 5'10" and maybe 155...always small for our ages. My uncle on my moms side is doing gluten-free as directed by his gastro for similar stomach troubles...etc. They say some Celiacs have miscarriages and have had a stillborn child....the list just goes on and on.

I guess even if it comes back negative, I am staying off gluten fr a while. I wan tto give the gluten-free diet another chance to fullly work. Iknow it makes me feel at least 75% better, and that is improvement in and of itself. Maybe if I did it longer than 3 mos this time I would get even better results.

Thanks for reading my long winded novel here. Besides my boyfriend being so good and listening - this is my only avenue to vent.