Hi everyone, I have a bit of a dilema

I just got a phone call today for me to have a scoping done. I'm not sure exactly which test was ordered. The receptionist said that I was going to be sedated for this test.

Question: I've been gluten free since June 1st, my test in not till Dec.29th. Is this test worth getting? My blood tests where negitive because the dr didn't know what they were doing. Not going back to eatting the stuff either.
I did have a skin biopsy done, still waiting on those results. The dermataligist said that IgA antibodies could be detected up to 2 yrs for celiac. I don't know if I believe that, I find the medical profession very ignorant about the whole affair. If that was the case, how come the bipopsy they take from your intestine isn't tested for Iga antibodies?, they only check to see if the villi is flattened. Is Dr Fine looking for Iga antibodies, when he does his testing? And why doesn't his testing not get some recgontion from other labs. In other words why don't other labs do similar testing? Am I confused

Just don't want to go through a test if I don't have to. Thanks for any help, Patricia

Getting tested can get very confusing.

If you had a skin biopsy and if that is positive, you have your answer as DH=CD. I hope the doctor who took the biopsy took the "normal" skin next to the lesion and not the lesion itself. You should be able to get the results of the biopsy in a week at the most, I would think.

Probably the main reason that Dr. Fine's tests are not mainstream is that he has not published in a peer reviewed journal. Dr. Fine says that he will be publishing...we just don't know when.

I think another reason Enterolab is not mainstream is that his tests don't diagnose CD. Most doctors are looking for villous atrophy and ignore the whole spectrum of gluten sensitivity. There will have to be a complete shift in how doctors view CD for them to accept Enterolab.

Dr. Fine has patented his testing procedure so other labs cannot duplicate his tests without his permission. As most doctors are ordering blood and biopsy, there is no large demand for stool testing.
Anne

The biopsy probably won't detect villious atrophy since you've been GF for that long, at least if it is due to gluten. But if they're looking for other things, it might be worthwhile to do anyway.

I agree with Nancy in regard to the biopsy. It won't likely show any villi damage (due to gluten), but it may show other problems.

I would ask yourself how you are feeling. While not everyone is back to 100% at six months, if you are feeling really good and have no intention of returning to eating gluten~ you might just want to skip the biopsy. If you are still having GI problems/symptoms in December, it might be worthwhile to have the scope to rule out any other problems. There is a chance it might show signs of healing celiac disease at that point, but with negative bloodwork and six months of gluten free diet, the chance would be very slight.

I'd leave it on the books for now, and wait until December to cancel (if you decide to cancel) based upon how you feel then.

Maybe your skin biopsy will come back positive, and then you will have a diagnosis!

You know, I think that Dr. Hadjivassiliou is looking for that in patients with gluten ataxia who do not show villous atrophy, and they are finding intestinal antibody deposits in otherwise normal villi tissue. Still, after six months gf, even if they looked..they might not find it.

Cara

I should get the skin biopsy back next week sometime, she told me a month for the test results? She did biop a site that was close to the rash, I actually got a rash from wearing a bandaid for three days. Probably had gluten in the adhesive?

I was feeling great till about three weeks ago, gradually crashed into the familar fatigue and pain. I have been really diligent about what I eat, think I will have to get further testing done on other food allergies. Losing weight because of lack of fat in diet now. Just dicovered coconut milk, and this has given me a few more options of other things to eat.

Reason why my blood test were wrong was because I had almost eliminated gluten from my diet. I ate it maybe once a week, only because I had no other choice of foods I ask the dr about this and she told me it didn't matter, later learned that I know more then she.

I'll see how the skin thing goes, I would of preferred to talk to a GI dr before the test was booked. How backwards hah. Thanks again, Patricia

That is very unusual that they'd book the test before meeting with the GI.
In some respects, it is good because it gets you into the schedule sooner and it can always be canceled. I've known people who had to wait months to get into see a GI, and then more months to get the scope scheduled.

You WILL BE meeting with the GI between now and then, right?

Cara

Afraid not......

Makes me wonder if any one knows what there doing.

I am seeing the dr this week, I will inquire on what is going to be performed. All I asked for was to see a GI guy, this is what I got. Don't know if its a gift horse or what I suppose its a good thing, get to see whats happening on the inside. On the other hand, if there was damage done I'm thinking it will have been healed.
I just don't want unneccessary testing done. Seems some what invasive.
Feeling kinda lost with my health lately, thought that I was doing good, then ended up crashing. I did get glue or something, maybe dairy, anyhow through me into this terriable fatigue. Back to the drawing board Patricia

You mean, you are expected to go have this procedure done without ever even meeting or talking to the GI ? I wouldn't like that either!

Has anyone else ever heard of that?

Cara

Patricia,
Have you considered that you might have a corn allergy/intolerance? The glue on the band aid contains corn and gives me a terrible rash and corn is notorious for making people very very tired with painful joints and muscles. Just a thought. Cyn

No never thought corn.....

Am now though, I eat corn chips almost daily.

Lovely, something else not to eat. What kind of dr do I need to see to figure out all these food allergies. Will I ever be able to eat some of the foods I have eliminated?

I was told that there is a shortage of GI drs in my province, maybe there thinking is test, and if its something, then see a dr. All seems so backwards.

Thanks Cyn for the corn idea, I think . Patricia