How Reliable Are The Tests? Desperate!

[dizzy]

Hello, I am new here, just started doing some research. I am considering taking the tests, but just wondering how reliable they are. I have had IBS for years, had all kinds of tests, been to the mayo clinic, and recently been to a allergy specialist. I specifically said I think it could be something Im eating, he did the scratch tests on my back, about 80 of them, and only was allergic to eggs and some pollens. I asked about wheat, and food sensitivity, and was told that if I didnt test positive from the scratch tests, then Im not allergic, and the only way to tell if Im allergic to wheat is from a biopsy. So, I just started reading up on gluten sensitivity, and Im wondering why any of my docs never said anythig to me. All they want is to give me prescriptions to meds I cant afford. Anyway, just wanting some advice, thanks in advance...

[darlindeb25]

well, we celiacs are not allergic to wheat, rye, barley, or oats--we are intolerant--there is a difference--celiacs is not an allergy--with an allergy, in a severe reaction, your breathing is effected, sometimes to the point that you cant breathe--that doesnt happen with intolerances--our bodies cannot tolerate these grains and our bodies fight the grains---it is different and you are talking to an allergist, who may not even know what celiacs is---many diaticians have no idea what it means to go gluten free-----go beyond the allergist--ask the doctor to be tested for celiacs--dont give up--keep pushing for your answers--otay deb

[Guest jhmom]

Hi dizzy and welcome to the boards. You have come to the right place for answers.

I am considering taking the tests, but just wondering how reliable they are

In my opinion the blood test are not that accurate, yes they are with some people but not everyone. The way it was explained to me is it takes time for a disease or illness to show up in the blood, for some it's quick for others its not. I was tested 2 times for celiac and both mine came back negative on top of that I had an endoscopy and it too was negative, showed patchy inflammation but not enough for a dx.

If you want accurate answers then you can do one of 2 things:

1. Go gluten free for a couple of months and if you see an improvement. If you do then you are intolerent as this is a test in itself because only people with gluten intolerence will improve on the diet.

2. Order a stool panel test from www.enterolab.com , this test is more sensitive than blood and more accurate.

I hope you get some answers soon and feel better!

[cherylk]

Stacie, my child is the victim of a negative blood test. Why do the doctors hold so firmly to what the blood test says? My child was diagnosed through enterolab with gluten intollerance, but because she does not have diarrhea and the blood panel is negative, they say she absolutly does not have it. She also is not of short stature being that I am 5'10" and her dad is 6'4". I am anxious to talk to some constipated celiacs and get some info on what they have been through. Any idea when stool and gene testing will become accepted?

[dizzy]

hello again, that is a very good question, on why the doctors wont accept that as a diagnosis, its all very confusing. If I try the diet first, because not sure if Ill be able to afford the stool test, how soon should I notice any difference?

[MySuicidalTurtle]

Depending how long it takes you to be fully glutenfree. . .a few weeks or months to notice a difference.

[dmchr4]

Can't you be gluten intolerant and NOT have celiac disease? I thought I read that somewhere.

[strack2004]

Dizzy., I have been on an SCD celiac diet for about 5 and a half months now. I had blood tests via Mayos which were negative. Do not wish to have the biopsy. My understanding, too is that the blood tests are not to be trusted. I, too, have not done the stool test which I would like to have done. Just can't afford the tests . I am on Medicare and they do give a discount, but it still seems too much. So I do not know if I am a celiac person or not. So far I have had not relief from my constipation. Have had some relief from upper abdomen, under the right center ribcage sharp pain. It still comes once in a great while. More common is a kind of burning which is sometimes stronger and sometimes vague. Have had my gall bladder removed, unfortunately last winter. I may be having trouble with fats and with b ile going directly into my small intestine. I have experienced much better sleep patterns and much better energy levels. The diet I use is called The Selected Carbohydrate Diet . You can find lists of legal and illegal foods at Open Original Shared Link through the vicious cycle.info/ . Because I know that I am lactose intolerant, I cannot use all the foods allowed on the diet. I also don't get along with tomatoes and acid type fruits, which is very limiting. I keep a food journal . Think one of my problems is that even within the dietary limits, I tend to change too many variables at one time. This is especially true of supplements, vitamins, minerals , the O.T.C. stuff. All that I take is supposed to be gluten-free, but I sometimes wonder how the people who answer the phone when you are checking out their product, get their information.

There are so many other things out there that can contribute to ibs, which I have had since early childhood, though I didn't get a diagnosis until 15-20 years ago. In other words, it wasn't called ibs. I am now 76. I sometimes wonder if my present constipation is complicated by the fact that I had 6 children in 10 years and did not do any particular exercises to keep my abdominal muscles in shape. Now I walk and do sit-ups in the tub, but don't think that is enough to toughen those muscles very much. There are other things that play in , too. This is long enough for now. Cheers, Ruth

[Guest jhmom]

Stacie, my child is the victim of a negative blood test. Why do the doctors hold so firmly to what the blood test says? My child was diagnosed through enterolab with gluten intollerance, but because she does not have diarrhea and the blood panel is negative, they say she absolutly does not have it. She also is not of short stature being that I am 5'10" and her dad is 6'4". I am anxious to talk to some constipated celiacs and get some info on what they have been through. Any idea when stool and gene testing will become accepted?

cherylk: I am not sure why docs only look at labs results, most of them do not accept Enterolab's results OR an improvement on the gluten-free diet however my GI doc did. But it is our body and we can do what WE want! I hope your daughter is on the gluten-free diet and improving. I did not even have my daughter tested through her Ped. When my test came back positive through Enterolab I dediced to have her tested too and it was positive! I simply tell her docs up front she has gluten sensitivity and is on a gluten free diet and NO ONE has given me greif about it, even if they did I wouldn't care or change anything! I know how she and I both react to gluten and we will both remain gluten-free for life!

[dizzy]

Hi all! Boy Ruth, sounds familiar. I cant believe I went through every kind of miserable, invasive, test at the mayo, but they didnt even breath a word of gluten sensitivity. Im trying to save for the stool test, but, you know how life goes. Im going to try the diet, just hope it doesnt take too long for me to feel results. Im having a hard time at the store finding food gluten free, I dont know what to do! well, the search goes on...

[minibabe]

I have been sick for over two years...when I first went to a GI I had an endoscope w/ a biopsy and the results came back negitve. It is now two years later and a change in GI's and I have been diagnosed. My new GI gave me the blood work first and it came back highly positive then I had another endoscope done, which for the second time came back highly positive also. It has been know to come back negitve the first time and then come back positive. Good luck though but I have read that the endoscope is the best test.