Stool Testing

[mbm1]

Hi.

This is my first post. My daughter and I both have most of the symptoms of Celiac and mistakenly tried a gluttn free diet before diagnosis. Both of our symptoms greatly improved. Has anyone tried the stool testing through enterolab? mbm1

[CMCM]

Quite a lot of us here have done testing thru Enterolab. It is especially useful for people who have been suspicious of the possibility of celiac/gluten sensitivity, and who have for varying lengths of time been avoiding gluten....therefore making a blood test diagnosis difficult. The reasoning and science behind stool testing makes a LOT of sense.....especially since the intestines are where the reaction originates. Antibodies getting into the blood is a later process, and tends to occur after you have a lot of reaction and possible damage in the intestines. Stool testing shows antibodies for up to a year after your last gluten meal! If a gluten free diet makes you feel a lot better, that in and of itself tells you a lot. However, many people are reluctant to give up gluten unless they know "for sure".

Be aware that stool testing doesn't diagnose celiac disease, but if you get the full panel test you will get a gene test, which will reveal whether or not you have a celiac gene (and therefore a predisposition to celiac disease), it will show if antibodies to gluten are being produced, and there is also a malabsorption test. You also get a casein sensitivity test (many celiacs are also sensitive to casein, the milk protein).

If you have some or many of the known celiac related symptoms, and if the Enterolab tests show antibodies and/or malabsorption, and if you have the celiac gene, then you can certainly feel pointed in the right direction. I did this myself, went on a gluten free diet, and feel 1000% better as a result. For many or perhaps even for most of us, this is as much of a diagnosis as we need and we are content following the diet to prevent further symptoms and possible internal damage. If you do enough reading on the subject, you will probably conclude like I do that gluten is truly a poison, and that no one, celiac or not, should really be eating it. There are numerous people here on this site who do not have the celiac gene, who were very sick from eating gluten, and who feel like new people on a gluten free diet. There is much that is not understood about gluten and how it affects people!

If you are a person who demands a doctor's firm diagnosis, then you are setting off down a road of gluten challenge to damage yourself to the point where antibodies will show on a blood test, and there would then be the endoscopy costs etc etc. And if no antibodies showed in your blood, if an endoscopy didn't happen to show celiac disease, you'd get a "negative" diagnosis and probably be told to go back and eat gluten. This has happened to a lot of people!

Go to Amazon and get the book "Dangerous Grains" and "Wheat Free, Worry Free", and that's a good start on understanding this whole thing and where to go. Remember that the end result of finding out you have celiac disease is a gluten free diet!

[hathor]

I was in the same situation and tested through Enterolab. They also helpfully (?) found I was intolerant to casein, egg, soy & yeast. That will teach me to order additional tests I guess it was worth it, though, since I felt even better once I cut out the additional items.

I also didn't want to go through the hassle of going to the doctor and pleading for the testing. Given my major symptom (constipation) I thought I would just get a prescription for that or a plea to eat more fiber. (More? It was practically coming out my ears. But I was having a lot of wheat bran and whole wheat -- which of course was making things worse )

Even though Enterolab just confirmed what the diet was telling me, it was worth it, even beyond the additional diet restrictions I received. I was wondering if my improvement off gluten was all in my head or perhaps due to something else. I know my husband thought I was talking myself into something I didn't have. So it was useful for both of us to know for sure. It also helped immensely in dealing with the rest of my family to have actual tests. They don't have to know that not all doctors accept them

I don't know if my gene testing was all that useful. Most people have either celiac genes or ones Enterolab identifies as associated with gluten intolerance. I didn't realize this when I ordered it. I suppose there is some advantage to knowing one's genes when discussions on boards like this turn to the issue. (My bits of fun, double DQ1, does turn up -- as a possible different marker for celiac, or for gluten intolerance with neurological symptoms ) But I don't know if all that money is worth it.

[mftnchn]

After finally finishing years of treatment for lyme disease, my focus turned toward building my health back up as much as possible. One aspect, figure out how to address the chronic constipation. Magnesium didn't do much, had already tried extra fiber and digestive enzymes.

My daughter's doctor has been encouraging her to get the enterolab test. I started looking into it and decided to do the test just to eliminate this as a possibility.

When I came up so strongly positive, I called my allergist, and asked about the veracity of the test and what to do. He was not familiar with enterolab, but said the lab test seemed quite strongly positive. Since I am in China, we felt it was not useful to seek a biopsy, or to wait 10 months for my return to the USA for further tests.

So he said 3 months strict as possible gluten free diet, at which time I may have some sense if there is any improvement clinically. Of course I know that the likelihood is actually a life-time on this diet.

Also one month very strict milk free, then a milk trial. If symptoms, go 3 months milk free, then another trial.

So the enterolab has been very significant for me, and the more I read about celiac the more I am inclined to think this is the right diagnosis.

[lcbannon]

I just got my results back yesterday and they confirmed what I had suspected, Yes I have a gluten problem. I would reccomend the tests, however I did not do the gene test, I figure what good to know if I have the genes, because I know I feel better on the diet and if I stick to it I hopefully will never turn full celiac.

Good Luck

[CMCM]

If you feel better on a gluten free diet, and are willing to stick to it based on that fact alone, that is GREAT.

Unfortunately, a huge number of people go into total denial and don't want to believe that the great gluten, the great wheat is a problem. After all, wheat is such a major part of our diet, it's everywhere, in everything, articles tell us to eat lots of fiber. So this group of people don't want to go gluten free and don't want to consider this may be a problem. So perhaps for these people, knowing they have a celiac gene would spur them to following the diet. For others who don't have symptoms, at least knowing about the gene might provide knowledge down the road if symptoms kicked in.

I guess you can have the celiac gene and perhaps ignorable symptoms and never suffer from it. My mom has 2 celiac genes, which means she got one from my grandmother, who lived until 99 (!!!!) with no major symptoms except arthritis, which could be attributed to celiac disease. Nevertheless, she led a long, fairly healthy life and was mentally sharp up until her last day.

With me, I had digestive symptoms my whole life but I lived with it until it got quite a bit worse by age 56. My test showed a celiac gene, the stool test showed antibody reactions, but no malabsorption. And several years previously, my standard celiac blood test was normal. Yet I feel 1000% better on a gluten free diet. A doctor would tell me I don't have celiac disease, go eat gluten to my heart's content despite having the gene. So it really comes down to how I want to eat, and how well I want to feel. The question comes down to "Is that donut worth several days of digestive upset?" Or "Is eating gluten on a continual basis worth digestive woes on a continual basis?"