Pros And Cons Of Being Tested

[latteda]

I know I have posted quite a few topics on this forum lately. I am still trying to figure all of this out and need help, so I hope there are some people out there who are willing to answer all my questions.

First of all, let me give a quick background on why I think I very well may have Celiac. About seven or eight years ago, I went through a time where I was struggling with extreme lathargy, some headaches, and bad muscle aching. I went to a nurse who also did nutritional consultations, and she suggested that I might have a wheat allergy and be extremely deficient in vitamins and minerals. I went on a wheat-free diet immediately and started taking supplements, and within a day I felt like a new person. One night a week later, I ate lasagna and literally could not wake up until early afternoon the next day because I was so tired, achy, and sick feeling. I have been wheat free ever since then.

About a year after deciding to go wheat-free, I was in an automobile wreck and ruptured my spleen. I was in the hospital for a week and, by a miracle, did not have my spleen removed. Ever since that incident, I have been to the doctor on and off for the last six years because every so often I get very sick...I'll be so tired I can barely function, have muscle aching, loss of appetite, bloating, stomach distention, abdominal pain, sometimes a bit of fever, unexplained feelings of depression or apathy, persistent nausea, loss of breath, dizziness and more. The diarrhea has been present, but only occasionally. My immune system has also been weakened so I get sick very easily and it takes me longer than most to recover...up until recently I always attributed that to the damage to my spleen even though doctors have said it should be functioning normally. I have been tested for a score of different things including mono, internal bleeding, tick diseases, ulcers, diabetes, thyroid...all of which have come back negative. The only thing that has come back positive was a test for anemia.

I have been aware of Celiac disease for quite awhile since I've been eating wheat-free, but I never linked my persistent symptoms to it before. I am absolutely, positively, SURE that I have a problem with wheat. I'd also noticed that I seemed to react to barley from the malts in cereals and things and to random things that I knew were wheat free such as various juices and sauces. I always just avoided those things and chalked it up to another random allergy. But after reading up on Celiac I saw that all of my symptoms are on the list, and also realized it would explain the problems with these other foods.

Now the question is, should I be tested to find out for sure? I have been thinking of the pros and cons and still can't decide. I was hoping I could get some feedback. I know opinions will differ but perhaps you will be able to help me.

PROS: It would give credibility to my problem * I would know whether or not I should test future children

CONS: I would have to go back on gluten in order not to get a false negative (absolutely horrifying for me to consider ingesting any wheat at all because it knocks me out so badly if I ate even a few slices of pizza I'd be in bed for a week) * It would be on my insurance, and I would rather not have that

Any other thoughts?

I was also wondering, what testing can you get done without going BACK on a gluten diet that would make the possibilities of a diagnosis more probable? Can you have the genetic testing done while still having no gluten in your diet? It seems like if I could, and tested positive for the gene and also knew that gluten bothered me, then I could safely assume that Celiac is the problem.

By the way, I've been off gluten for one or one and a half weeks so far, and I can happily say that I am feeling much better. This is the longest I've gone without feeling nauseated every day in who knows how long! Yesterday was the first time in an extremely long time that my stomach actually felt GOOD all day long.

[latteda]

Someone? Anyone? Please. Even if all you can answer is the question about testing, that would be awesome.

[Gfresh404]

I know I have posted quite a few topics on this forum lately. I am still trying to figure all of this out and need help, so I hope there are some people out there who are willing to answer all my questions.

First of all, let me give a quick background on why I think I very well may have Celiac. About seven or eight years ago, I went through a time where I was struggling with extreme lathargy, some headaches, and bad muscle aching. I went to a nurse who also did nutritional consultations, and she suggested that I might have a wheat allergy and be extremely deficient in vitamins and minerals. I went on a wheat-free diet immediately and started taking supplements, and within a day I felt like a new person. One night a week later, I ate lasagna and literally could not wake up until early afternoon the next day because I was so tired, achy, and sick feeling. I have been wheat free ever since then.

About a year after deciding to go wheat-free, I was in an automobile wreck and ruptured my spleen. I was in the hospital for a week and, by a miracle, did not have my spleen removed. Ever since that incident, I have been to the doctor on and off for the last six years because every so often I get very sick...I'll be so tired I can barely function, have muscle aching, loss of appetite, bloating, stomach distention, abdominal pain, sometimes a bit of fever, unexplained feelings of depression or apathy, persistent nausea, loss of breath, dizziness and more. The diarrhea has been present, but only occasionally. My immune system has also been weakened so I get sick very easily and it takes me longer than most to recover...up until recently I always attributed that to the damage to my spleen even though doctors have said it should be functioning normally. I have been tested for a score of different things including mono, internal bleeding, tick diseases, ulcers, diabetes, thyroid...all of which have come back negative. The only thing that has come back positive was a test for anemia.

I have been aware of Celiac disease for quite awhile since I've been eating wheat-free, but I never linked my persistent symptoms to it before. I am absolutely, positively, SURE that I have a problem with wheat. I'd also noticed that I seemed to react to barley from the malts in cereals and things and to random things that I knew were wheat free such as various juices and sauces. I always just avoided those things and chalked it up to another random allergy. But after reading up on Celiac I saw that all of my symptoms are on the list, and also realized it would explain the problems with these other foods.

Now the question is, should I be tested to find out for sure? I have been thinking of the pros and cons and still can't decide. I was hoping I could get some feedback. I know opinions will differ but perhaps you will be able to help me.

PROS: It would give credibility to my problem * I would know whether or not I should test future children

CONS: I would have to go back on gluten in order not to get a false negative (absolutely horrifying for me to consider ingesting any wheat at all because it knocks me out so badly if I ate even a few slices of pizza I'd be in bed for a week) * It would be on my insurance, and I would rather not have that

Any other thoughts?

I was also wondering, what testing can you get done without going BACK on a gluten diet that would make the possibilities of a diagnosis more probable? Can you have the genetic testing done while still having no gluten in your diet? It seems like if I could, and tested positive for the gene and also knew that gluten bothered me, then I could safely assume that Celiac is the problem.

By the way, I've been off gluten for one or one and a half weeks so far, and I can happily say that I am feeling much better. This is the longest I've gone without feeling nauseated every day in who knows how long! Yesterday was the first time in an extremely long time that my stomach actually felt GOOD all day long.

I understand where you are coming from. I am considered a Non-Celiac Gluten Sensitive person myself and have never had an "official" diagnosis made to confirm this. Confirmation would be nice, but ultimately the most reliable and accurate test is a negative or positive dietary response and you clearly have a positive one. Current testing only diagnoses Celiac Disease, not gluten sensitivity. My Aunt actually sent me an article saying that "60 to 70 percent of the patients who come to the Center for Celiac Research appear to have gluten sensitivity." It amazes me how seemingly stubborn the medical community can be.

A positive dietary response such as the one you clearly already had should been enough. Just because it isn't yet universally "accepted" does not mean a thing. The research just simply has not yet been done.

And if you truly are Celiac and not gluten sensitive you would have to do a gluten challenge which sounds like for you would just be too much. And if you are gluten sensitive and NOT Celiac, the test will be negative anyway even with the gluten challenge. So in my opinion, no further testing is truly necessary. The only test I would actually recommend is something called the Enterolab stool test. This can actually test for gluten sensitivity. The good thing about this test is that it is much more accurate than the blood/biopsy tests and that you don't have to be currently ingesting gluten for it to show up accurate. They do not give exact numbers for how long you can be gluten free for the test to still show up positive, but from what I read, they basically say, you can be gluten free for up to 1 - 2 years before the tests lose their accuracy.

Some "official" confirmation would be nice, believe me, I'd like some too, but ultimately no test can tell you what foods bother you, only your body can do that.

[Jenny (AZ via TX)]

If you are going to get tested, make sure you already have insurance. I've heard it can be difficult to get later because of a pre-existing condition. Also, I don't know how old you are, but if you are going to get life insurance, I would also get that before getting tested too.

I was tested by blood work and biopsy and for me, I needed that diagnosis to be gluten free. If I hadn't had the positive results, I would probably be cheating. Sounds silly, but the test made it totally real for me and not just a guess. It's been one year for me and I haven't cheated once. Also, if you are tested and you are negative, it could be something other than celiac. There was a gentleman that posted the other day who thought he had gluten issues, but is was cancer of the pancreas.

Unfortunately, with the testing, it is invasive if you go for the biopsy. There was no pain, but my GI did put me under which is always a risk.

It is such a personal choice. There are so many that have tested negative, but still have gluten issues and have gone gluten free and feel much better. You can get false negatives with the test.

It would be really hard for me to start eating gluten again once I had already stopped. You could always stick to the diet for several months and see if you feel better. If you don't you could always get tested at that time (after eating gluten again).

I wish you well in finding the right answers.

[puddleglum]

I understand your concerns about needing to go back on gluten, and I have to agree with the others regarding your reasons for getting tested. For me, one of the considerations for my daughters is when they go to college. If they are officially diagnosed, they are eligible for certain accommodations from the colleges. Without that, they might not be able to live on campus. I personally, am finding it a bit of a relief to get official diagnoses -- it explains so much, particularly in my younger daughter's life.

[smalltownslackermom]

I can imagine it would be a very hard decision in your case.

I am doing the gluten-challeneg but had only been gluten free for a couple of months. I don't get completely laid out in bed - well, rarely - from my reaction to gluten. I am doing it for long-term care, as in, if any other conditions or issues come up as I age (I'm 45), I do not want Dr's continuing to tell me that it's just in my head. They better damn well know that I have been dx's according to their standard (that I think is barbaric in its way - I have to make myself sick, DO HARM, in order for them to say, "ok, the gluten is doing you harm, now stop eating it...") so that they treat me accordingly. Also, if I end up in hospital or nursing home or any other manner of institution. I also wish to become an official celiac statistic. Since it is so badly dx'd and even when I have been having more obvious symptoms, doctors were blowing me off, I want it _known_ to the world that by the apathy in the medical world they have been doing more harm than good for about, what, 2.7 million of us in the US?

ok, getting off my soapbox now...

[samcarter]

The only testing I had done was an EMA blood test--the only blood test my GP was willing to run. Prior to that, I went on a gluten free diet voluntarily for a week or two, and felt so much better that I knew gluten had to be the culprit. Then i ate gluten again for two weeks, a lot of gluten, and felt just horrible. The test came back negative, after all that.

I decided I didn't need an official diagnosis. The gold standard for me is a positive dietary response. Also, consider that if you're ever in a position to need to get new health insurance, if you have an official celiac disease diagnosis, that can make it more difficult---considered a "pre existing condition". I'd rather treat myself and not have to argue with insurance companies. Right now we have very good health insurance, but you never know.