Stool Test Positive!

[jshelton999]

Well, I just got my lab result back for the gluten sensitivity stool test. The normal value for antigliadin antibody (iga) is <10 units. My result was 124 units - clearly positive for gluten sensitivity. I knew instinctively that I had this disorder and I know it's been the missing part of my wellness puzzle for at least 15yrs...all those countless bouts of what I was told were stomach flu were not stomach flu after all. I'd always been puzzled why those stomach problems were frequent and would last for weeks or even months... Now I know...

I've been on a gluten-free diet for several weeks and have improved dramatically but still there have been a few times when I questioned "Do I really have a gluten disorder?" and would do my own "lab test" by having a gluten-laden meal. Sure enough, each time I would get a reaction. But now with this lab result confirming Celiac/gluten intolerance, I'll have the leverage I need to stay on track and eventually fully recover. I'm a bit emotional right now because this has been such a long battle and finally I'm getting the answers I need...

Thanks to everyone here for helping me sort all of this out and suggesting using Enterolab after my other tests were inconclusive - including the endoscopy.

[ravenwoodglass]

Now you know and now you can heal. I am glad you finally got the confirmation you needed to stick with the diet although it sounds like the gluten challenges you did were pretty conclusive in themselves. As you already know it can be hard at first but in the end it is soooooo very worth the trouble. I hope you heal quickly and soon are feeling great but do bear in mind that for some of us there are some ups and downs at first.

[ang1e0251]

I'm glad you have the answer you wanted. Keep listening to your body, it will continue to tell you what foods it needs. You are going in the right direction and I wish you great health! Keep asking any questions here you like.

[jshelton999]

Thanks for your kind replies. Just curious, but might my test result have been much higher if I hadn't already been on the gluten-free diet for several weeks at the time of testing?

[Rockgurl]

Thanks for your kind replies. Just curious, but might my test result have been much higher if I hadn't already been on the gluten-free diet for several weeks at the time of testing?

Not necessarily, as Enterolab state that the antibodies remain in your stool for up to a year. I just got my postive results too. My antibodies were 135. Welcome to the club!

[peacebwu]

Hi! glad your feeling better. You mentioned in your post "Enterolab" stool test. How do you contact them? Are they local to you? I too have been getting the "run around" from dr. to dr. and yet, feel that I am celiac! Would you pls let us know how to contact them or?????? thanks! d

[Rockgurl]

Hi! glad your feeling better. You mentioned in your post "Enterolab" stool test. How do you contact them? Are they local to you? I too have been getting the "run around" from dr. to dr. and yet, feel that I am celiac! Would you pls let us know how to contact them or?????? thanks! d

You can go to their website (link below) and order their tests online and they will send you everything you need to do the tests that you choose. They are based in Texas but I am in Connecticut and could do everything by UPS. I did the complete Celiac panel and also the Dairy and Egg test too. It wasn't cheap but I am so glad I did it because now I know what I can and can't eat and can start to plan for the rest of my life.

www.enterolab.com

[peacebwu]

You can go to their website (link below) and order their tests online and they will send you everything you need to do the tests that you choose. They are based in Texas but I am in Connecticut and could do everything by UPS. I did the complete Celiac panel and also the Dairy and Egg test too. It wasn't cheap but I am so glad I did it because now I know what I can and can't eat and can start to plan for the rest of my life.

www.enterolab.com

[peacebwu]

Hi - I did go on the enterolab site and ran all their material. Did you order the Gluten Sensistivity Stool and Gene Panel Complete $369 plus the egg, yeast and soy $199.....after reading all the pages, I gather the two would cover everything????? Do you agree? thanks so much for leading me to this site there is so much info in it. Unbelieveable how the drs. (at least mine) give such a "round around" w/the IBS and oh it's just stress info! thanks again...pls let me know if these were the test panels you took! (I wonder if submitted to insurance would they cover...have you tried!)? d

[Lisa]

. I did the complete Celiac panel and also the Dairy and Egg test too. www.enterolab.com

I don't believe that Enterolabs offers a "Celiac Panel". They can test you for a gluten sensitivity, but cannot test for Celiac. Never have.

[Rockgurl]

Hi - I did go on the enterolab site and ran all their material. Did you order the Gluten Sensistivity Stool and Gene Panel Complete $369 plus the egg, yeast and soy $199.....after reading all the pages, I gather the two would cover everything????? Do you agree? thanks so much for leading me to this site there is so much info in it. Unbelieveable how the drs. (at least mine) give such a "round around" w/the IBS and oh it's just stress info! thanks again...pls let me know if these were the test panels you took! (I wonder if submitted to insurance would they cover...have you tried!)? d

I did the Gluten Sensistivity Stool and Gene Panel Complete for $369 and then they offered a free dairy tolerance test and then I ordered the egg one on its own. It cost me in all about $500. I have not submitted to my insurance because I have had so many things lately (3 surgeries, multiple doctor visits for a herniated disk incl MRI, and multiple dental surgeries) that I just didn't want to tip them over the edge and have them refuse me! I'm having an Endoscopy on monday too. They must be so sick of me! You can claim for it though, and Enterolab provide you with a code for each test that you buy so you can do just that.

[peacebwu]

I don't believe that Enterolabs offers a "Celiac Panel". They can test you for a gluten sensitivity, but cannot test for Celiac. Never have.

[peacebwu]

Your post stated that Enterlabs does not test for Celiac, only celiac sensitivity. My blood test already shows allergic to gluten yeast, soy, egg, dairy,eggs (after reviewing many blogs, etc...this seems true to being Celiac). My dr. is now running a Celiac blood panel on me (no results until the 17th)...... this is the second one in two years. do you think I should do the Enterlab test when since they cannot assure that I am Celiac. It seems (been to many drs., had a endoscopy, colonacospy,) again they (including my regular internist) say IBS and stress (or caused by antibotics.....took only for a few weeks during a bad bout)........is there any sure way to find out that you are Celiac or is it just a hit/miss and you find out by trial and error on how you feel w/what you eat or eliminate from your food selection!

Another question: let's say you are Celiac from the gluten....does it make your small intenstines worse when you eat the other allergic foods? or do these "other"s just create a stool problem and have no bearing on your Celiac condition? Wow! it just keeps going on and on........thanks to all, this is just like going to college again........the more you learn .....there's still more out there to learn!

[Lisa]

I will attempt to answer all your questions from the ground up.

Celiac is an autoimmune disorder. Consuming gluten triggers an autoimmune response, which will turn your body against itself. This occurs in the small intestine. There are some other foods that can create the same response by destroying the villi, but I believe it is rare.

If I understand correctly, your have been tested for allergies. Celiac Disease, gluten intolerance and a gluten allergy are different, but common in the sense that they respond to gluten.

I am not a fan of Enterolabs. The national Celiac organizations do not recognize stool testing as a reliable source to diagnose at this time. To my knowledge, there has never been an independent study regarding the accuracy in their testing. And it's a great deal of money to tell you what you already know....that you have issues with gluten or other foods. On the bottom of their interpretation, they often suggest that every first degree family member should be tested (at $500.00 a pop). Their genetic testing can do nothing specific, but to tell you that you cannot have Celiac because you do not have the appropriate genes. There is no specific Celiac gene. They merely inform you that you might have a increased risk - nothing more.

I do acknowledge that some people have exhausted all forms of testing and Enterolabs may have been a crucial piece of the puzzle. Many people sing their praises. I'm just not one of them.

Unfortunately, testing is not what we would like at this time. I suggest that people who suspect a gluten problem, have a full serologic panel and an endoscopy/biopsy. Anytime someone has digestive issues, and many here have for years and years, it's a good rule of thumb to have these tests to rule out more serious issues.

What ever direction you choose, I wish you success.

[no-more-muffins]

I would say it probably wouldn't be worth it to test with enterolab not because of the same reasons as the pp but because you have already had blood results that were positive for all the things they test for. Your results would very likely be positive too and you would learn nothing.

For people who dont' have any answers and get the run-around or the "IBS" diagnosis from their dr. I think that using enterolab is worthwhile. I ordered all the sensitivity testing but not the gene testing. I want to know what I can't eat. I dont' necessariliy need to know my genes, although it is interesting.

Enterolab is nationally accredited as an independent lab. They are accredited by the same national agency that accredits many of the labs that are affiliated with my local hospitals and insurance providers. While there isn't enough research for sure about their testing etc. I believe the money I am spending on testing is far more worthwhile than the ct scan, ultrasounds, endoscopy, and sigmoidoscopy not to mention the 250 dollar consultation with a GI nurse practioncer who told me to go home and take immodium.

(This isn't meant to be a debate about enterolab, just my opinion.)

[jshelton999]

For me Enterolabs was a godsend! My blood tests came back negative as well as my endoscopy/colonoscopy - although frankly I had little confidence in my gastroenterologist. He doesn't talk and acted indifferent to me being very seriously ill for months. I couldn;t even get him on the phone and finally talked to his nurse who said "Well, I guess you could try a gluten-free diet and see what happens, but the doctor sees no need for follow-up."

So there I was seriously ill and in essence being told "Good luck!"... With a history of autoimmune thyroid, autoimmune pituitary, sleep apnea, chronic sinus infections, constant "stomach bugs", skin rashes and more than anything else profound fatigue - I desperately needed an answer as to what was going on. Also, I've been on LTD since 2002 and without a diagnosis my insurance company will stop benefits. My primary doc and my endo both refused to authorize benefits early this year and so there I was with my income stopped and so sick I felt like I should be in the hospital.

Now with a strongly positive result - 124 - I can focus on getting well and not have to constantly be under pressure to "prove" I have an illness and that my problem isn't just a character issue...lack of motivation...bad outlook, etc.......

[Rockgurl]

I agree...the testing for this disease, and the attitudes of the doctors to its myriad obscure symptoms, falls extremely short, and really you are on your own when it comes to getting answers. I'm an RN myself and yet I still say this. I feel very strongly that I know my own body, and after years of reading and researching I was told there was nothing wrong with me time and again after multiple hospital visits, only to find out that I had correctly diagnosed myself with Endometriosis, which similarly has obscure symptoms. I was finally diagnosed after having a laparoscopy that showed my uterus had large holes eaten through it by disease, and my uterine ligaments were almost eaten through. This was the second laparoscopy....somehow the first doctor failed to see these blindingly obvious lesions even though he went in there and looked!!!!

I have similarly applied the same way of thinking to Celiac. My blood tests were negative and an extremely arrogant and ignorant doctor told me "congratulations, you don't have Celiac disease". I tried to talk to him about what I was experiencing and he just didn't want to know because it didn't fit in with how he wanted to see it. This is when I turned to Enterolab. I already knew my tests would be positive, but somehow seeing it on paper so to speak, makes it so much more real and so much easier to accept and apply oneself to the diet for life. I will find answers in any way I can to try and understand this disease. I know I am not imagining it, when I sit here after a two week gluten challenge with joint pain, heartburn and a generalized toxic feeling. Read the link below:

Open Original Shared Link

[sixtytwo]

That was so interesting. I have been tested by Enterolab with the result that I should stay gluten-free and have the gene. I have copied off this article by Dr. Fine and am going to take it to the doctor with me the next time. I really like my internal medicine doctor, but he does look at me, at times, like I could be making this all up, but he is very nice. I think he just needs more to read about it. As for rhumatologist, you could take him to China and leave him there, for all I care. I didn't like him the first time I went to him and I like his less now. I have heard that other people do not like him either. He isn't willing to hear anything I have to say about the relationship between the fibromyalgia (which, to his credit, he did diagnos in pretty short order) and the gluten intolerance. I would love to talk to a doctor that really "gets it".

Thanks for offering the article here. Barbara

[peacebwu]

Thanks for your kind replies. Just curious, but might my test result have been much higher if I hadn't already been on the gluten-free diet for several weeks at the time of testing?

[peacebwu]

Momma Goose - your reply was very informative for us new comers! It's important to me that I undertand the food allergy versus Celiac disease. When you have an allergy of different foods along w/Gluten to these foods DO NOT affect or destroy the villi? Is this correct (I know this is just an opinion but no matter where I try to research this I can't seem to find the answer?).

Another item: Does this site have a blog or do you know of one that helps someone like me w/allergy to egg, dairy, soy and GLUTEN buy some foods? I find it very hard to find something decent to eat.

Is there degrees of Celiac....in the Mayo Clinic info they state you are born w/it. Yet, many of us don't show any signs until later in life????? Do you know of anyone that HAS the disease goes away or they can resume eating a somewhat normal diet. We ALL who are reading this, I'm sure have the same questions.....thank you again.....for your opinions!

In my case, I did have the endoscopy/biopsy dr. found nothing....I found Gluten allergy thru blood test. I am taking a new blood test panel and will have results next week. It will be interesting to match versus last one. I guess the whole problem is to find a "good dr." and also really believe in him/her. This seems to be the situation w/most of us. thanks again!

(I'm holding off on the enterolab, no where have I found something that relates to Celiac stool except on their site???? Certainly, this would be an easy test for all our drs)

[nora-n]

Allergy is an IgE reaction, whereas celiac is an IgA reaction, sometimes IgG.

Enterolab tstes for tissue transglutaminase IgA in the stool, where it can be detected a long time before it shows up in the blood. Therefore it cannot diagnose celiac, as it finds the antibodies much earlier.

There is such a thing as latent and compensated celiac, re. your question about that one is born with it but it does not show up for years.

Read the first pages of Marsh's book on celiac, go to Open Original Shared Link and put in marsh and celiac in the search. It talks exactly about that.

Additonally celiac can be triggered by infections, and one can be gluten sensitive because of lyme disease.

nora

[ang1e0251]

It took me awhile to get the differences straight in my head but here goes: if I am in error anywhere, please someone write in and correct me.

There are three different ways you can react to wheat. First, you can be allergic to wheat which is a histamine response. This is an allergy and does not damage your intestine. You might also be allergic to rye or barley but that is a seperate allergy from wheat.

Second, you can be gluten intolerant. You may have varied symptoms that act like celiac disease but the medical community says this does not damage your intestine but you "merely" suffer the symptoms. There is no test to prove intolerance. The only treatment is to eat gluten free for life.

Third, you could have celiac disease. You carry the gene for it from birth but that doesn't mean you suffer from it. It can lay dormant for life or it can be activated by a trigger such as surgery, child birth or a viral infection. And it can be diagnosed but diagnosis is tricky. Best case scenario is you have a celiac disease blood panel drawn which is positive then you undergo an endoscopy. The biopsies are also positive for celiac disease. Boom, you are diagnosed!......Or, you take the blood test and it is a false negative, maybe an endoscopy which is also negative or either one of those could be negative and positive. I'm not trying to mess with you. For many people these are the results they are working with. Another way to be diagnosed is by biopsy of DH, the rash that some have with celiac disease. A positive biopsy is a diagnosis of celiac disease. Again the only treatment is to eat gluten-free for life.

It's very complicated and no wonder dr's are so confused about it. Some even think that GI is really the precursor of celiac disease. That the great damage just isn't there yet. There's no hard evidence either way, at least that's the way I understand it.

I hope this helps, I know it took me some time to grasp this concept. And this is just a simple overview. I'm still learning new things about my own reactions and this disease. Keep asking questions; it helps us all learn.