Testing--& Gluten In Diet

[raso]

Hi,

I am to have the full panel testing in the near future. I have such a long story, where to start. I've had few digestion problems until I encountered cancer at age 60. I had a sarcoma removed along with the distal portion of my stomach, and I have a roux en y. That's been more than a year ago, and the sarcoma is considered highly unlikely to return. I have had my share of digestive issues, mostly sorted out. There are some other medical issues, but let's say I've had most every test known to man, and things look good.

So, I went to a GI doctor thinking I had gastroparesis, or something like that, because I had so much bloating and gas, and sometimes voluminous stool, sometimes smaller. (had colonoscopy 1.5 years ago). Not exactly constipated, not diarrhea either. But I did have pain at times, spasms in my colon at times. I've recently had a abdominal/pelvic CT with triple contrast, checked out fine. So the GI thinks I might have celiac, or gluten problems. I like her, she is a good diagnostician. I have had a three vitamin/mineral deficiencies in the past few months that I assumed were because of my partial gastrectomy, with rewiring: copper, vitamin D & magnesium. Since being on those, things did get much better. I am not anemic, although I had been low normal, or slightly below normal, and couldn't get it any higher. I think taking copper helped with that, as it was after I had been on copper for a couple of months, the hemoglobin nudged upward, but I don't know. But the GI was not impressed, thought the deficiencies were unrelated to my surgery.

So, moving onward. During the past few months, I gradually stopped eating bread and bread products. I love bread, or did love it. I just decided it wasn't so good for a person. I have not lost weight, I gained it back from my surgery, however, and I am at a good weight. I never buy prepared stuff. I don't eat out a lot, and am reasonably careful. I do eat bread, perhaps once a week, but then not a lot. I love oatmeal in the morning, don't know what the chances are that is a problem with gluten. I really cannot think of anything that might have gluten in it except for the homemade soups--I eat them almost daily-- I prepare them using flour as a thickener. That would be it.

So I told her I did not intake much gluten, but she glossed over that. When I called a couple of days later to discuss with the nurse, the nurse said, "you're having pain and digestion problems, if you are gluten intolerant it will show up." !!!!! Not sure that is right. I did find a recent study which said that one only needed to be taking gluten for 10 days-2 weeks prior to testing, and these were from celiacs who had been gluten free for a long time.

Finally my question: Will I be wasting the testing if I have it with the diet I have described? I had them check on the cost of the tests as my has started over, and the cost is over $500.

Oh, yes, the GI surgeon who did removed the sarcoma stays out of the fray as far as vitamin and mineral deficiences, and he'd stay out of this as well.

Any ideas?

RASO

[kareng]

Here is osme info from The Celiac Center at the Univ of Chicago. They have a lot of info in an easy to read format.

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How much gluten should be consumed prior to being screened for celiac disease?

It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test or biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional.

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[tom]

...

I really cannot think of anything that might have gluten in it except for the homemade soups--I eat them almost daily-- I prepare them using flour as a thickener. That would be it.

...

I think that's enough gluten right there to say you haven't started a gluten-free diet, making talk of what duration for a gluten challenge moot.

Btw, that UofChi 12 wks quote sure seems overused considering that Mayo, Stanford, Beth-Israel, UofMaryland etc all say fewer weeks.

[raso]

I think that's enough gluten right there to say you haven't started a gluten-free diet, making talk of what duration for a gluten challenge moot.

Btw, that UofChi 12 wks quote sure seems overused considering that Mayo, Stanford, Beth-Israel, UofMaryland etc all say fewer weeks.

Karen,

Yes, those cautions I have seen--12 weeks seems like a long time. One cracker seems a lot smaller than one slice of bread, too. The latest study I saw said the amount did not matter so much, so then maybe I don't need to be concerned.

Tom,

I've seen the shorter times, too. So I'm glad (I guess) that you think the couple of teaspoons of flour I would get each day as a for sure gluten is enough. I cannot translate tsps. of wheat flour into a slice of bread, or half slice. But I will eat a slice of bread, or a bun sometimes, just not daily or even every other day.

I do not think it would be hard for me to eliminate gluten from my diet. Life would still be worth living! It would be nice to know if gluten is a problem for me or not, however.

RASO

[tom]

...

I do not think it would be hard for me to eliminate gluten from my diet. Life would still be worth living! It would be nice to know if gluten is a problem for me or not, however.

RASO

I know that saying "life worth living" isn't hyperbole at all - many here were impacted to that magnitude by gluten, myself included.

You may as well get tested asap, imho. Even if it's negative you might want to try all-out 100% gluten-free anyway to know more surely - lab results don't mean as much as 'quality of life' improvements you'd get if gluten is the issue.

And of course, if it's not, better to find out sooner so you can get on with finding what IS the issue.

[GFinDC]

What did your doctor suggest as a duration for your gluten challenge? Sounds like she thinks it will be a positive test right now. If you are eating gluten pretty much every day that should be enough to have a positvie. In theory. In reality none of us can tell you for sure what will happen. But you are having symptoms that may be from gluten / celiac damage now. A test may show positive resutls and it may not. That's the thing with celiac disease testing, it is not 100% reliable no matter how long you are on gluten. You could start eating more gluten and see if your symptoms get worse. That would be an indicator that there is a relation to gluten. Or you could get the antibody tests done now, and see what happens. I suggest upping your gluten intake for now, and getting the testing done. It may take a few weeks to get schedule for the blood draw, since it is the holdiay season.

[raso]

Hi,

Well, yes, I did add some more gluten/wheat to my diet in the past few days, with dramatically bad results, I thought. On Thanksgiving Day (Thursday) I had two slices of sourdough bread. As far as I know that was all the gluten I had because we ate a regular sized meal at home because our family get-together was Saturday. A few hours later I started feeling bad. Pains in joints, pains, in abdomen, bloating, and what I later decided was swelling in my throat. I felt like I was being choked, although I could swallow, etc. The next day, about the same, but I noticed my bowels had stopped working, ahem. I developed a bad cough and it sounded like bronchitis, so thought maybe I was getting a virus. Saturday was a bad day, and I began to wonder about allergies, so I tried a 24 hour antihistamine. I started feeling better, at least with the throat problems. I was very depressed most of the day.

Today, on Sunday, I feel so much better. No cough, no throat issues . . . doubtful that it could have been a virus that left in 24 hours. Do I have to eat more bread to get accurate test results? I did ingest more gluten on Friday, but not a lot. If I ate any on Saturday, it was unintended. I have also seen something somewhere on the internet about it taking 6 months of gluten free to get the bloodwork to change. Any truth there? If so I only cut down on gluten in September, but I never did entirely eliminate it as I was not convinced I had anything.

If I have a wheat allergy instead of celiac, can they tell that from the panel? I have to pay for the panel outright as we've started over with our deductible for the year. So is it worth it if I think I will just go ahead and eliminate gluten products regardless? As to timeline, I can take this test anytime, next week, the week after. Thanks for all your help.

RASO

[GFinDC]

They could do a wheat allergy test also, but you would need to request it, as it is not part of t\he usual celiac testing.

If you are going to do the gluten-free diet anyway, then there is no differnce in treatment. Some people have follow up testing for antibody levels once in ahwile to verify the antibodies have droped. But you can't tell if the antibodies dropped if you don't have an intial test level.

Another thing that should change is vitamin/mineral levels should improve. You could get those levels tested now and do a follow up later, say in 6 months or a year after going gluten-free.

Some reasons people like to get tested are if they have children who might get celaic, or need schools to accomadate their gluten-free diet. Some countries have programs to help with the costs of gluten-free foods. And if you wanted to participate in a study on celiac disease they generally only accept peope with biposy provien celiac disease.

There are some labbs that you can order tests from online that are cheaper, but i don't remember the names of them.

[raso]

Another thing that should change is vitamin/mineral levels should improve. You could get those levels tested now and do a follow up later, say in 6 months or a year after going gluten-free.

The above is of concern to my health providers and of course myself. I had them tested in mid September, and am supplementing. They were discovered in July, I supplemented then, but the improvement was slight. So, I am taking more of each supplement. Those deficiencies are being watched regardless of the question of celiac or not.

Sounds like I should go ahead and get tested. From what I've read a couple of the tests could, not saying it is definite, but could point to a wheat allergy. But I guess a person could have both celiac and wheat allergy going on? It's confusing to me.

RASO