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Should I Wait For The Test?

DrewMa

By DrewMa
in Doctors

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DrewMa Newbie
DrewMa
Posted

Hello. After years of blaming the way i felt on a lousy diet, and im sure that was partly to blame, i finally pushed to see an allergist after i cleaned up my diet but still had all the same issues. As im sure you guessed The doc was all about testing for celiac, thankfully. I had never heard of it. When asking my PCP he always said lose the dairy its prob lactose. When the Blood test came back positive i wasn't thrilled but i was encouraged that at least it was an answer and i could fix it myself. Now my issue is that after doing some time at the library and lots of web time i know that the only way to be sure is the biopsy. My delema is that just to get into the gastroenterologist there is a 4 month wait. And who knows how much longer after that to actually have it done.

My question is do i realy want to put meslef through 4-6 months more of all this and put my life basicly on hold to have this test. i know if i change my diet there will be no point in having it at all. I know that no doctor would do this without seeing me first. but to wait that long for a 5 min appointment so he can read my file and say "yup lets do it" seems silly. As many of you im sure have been in this place i ask...What have you or would you do?

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Phyllis28 Apprentice
Phyllis28
Posted

I was diagnosed many years ago without a biopsy or a blood test (it did not exist). Dietary response was the confirmation that the diagnosis was correct. I have no interest in eating gluten just to "be sure" I have Celiac. I know it gluten me sick.

The decision is yours to go gluten free and not have a biopsy or not. If you want the biopsy one way to hurry the process up is to call the GI's office everyday to see there is a cancellation. Another option is to go gluten free and keep the appointment with the GI 4 months down the road. That way if you still don't feel well even after going gluten free you already have the appointment. If you are feeling good you can cancel the appointment.

Hope you are feeling well soon.

Lisa Mentor
Lisa
Posted
Hello. After years of blaming the way i felt on a lousy diet, and im sure that was partly to blame, i finally pushed to see an allergist after i cleaned up my diet but still had all the same issues. As im sure you guessed The doc was all about testing for celiac, thankfully. I had never heard of it. When asking my PCP he always said lose the dairy its prob lactose. When the Blood test came back positive i wasn't thrilled but i was encouraged that at least it was an answer and i could fix it myself. Now my issue is that after doing some time at the library and lots of web time i know that the only way to be sure is the biopsy. My delema is that just to get into the gastroenterologist there is a 4 month wait. And who knows how much longer after that to actually have it done.

My question is do i realy want to put meslef through 4-6 months more of all this and put my life basicly on hold to have this test. i know if i change my diet there will be no point in having it at all. I know that no doctor would do this without seeing me first. but to wait that long for a 5 min appointment so he can read my file and say "yup lets do it" seems silly. As many of you im sure have been in this place i ask...What have you or would you do?

You said that you have a positive blood test for Celiac. That IS a diagnosis. Blood tests and Biopsies can rule Celiac in but it can't fule it out and both can have false negatives. (make sense?). In your case an endoscopy would be to determine the extent of the damage. But you have Celiac Disease.

If I were in your shoes, I would begin the diet immediately.

itchygirl Newbie
itchygirl
Posted

A negative biopsy only means they could not reach a damaged piece. You have postive bloodwork, you have celiac. A biopsy may not pick it up, but its there.

The bloodwork may have false negatives, but not false positives. You're postive, you're postive. :)

scott-in-pa Rookie
scott-in-pa
Posted

You should be able to see a specialist before 4 months-- that is just crazy-- Is it possible for you to try another G.I. office/group and explain your situation. Granted, i had to wait about a month, but one month is much different from four months...I just had the endoscopy this week-- showed sure signs of Celiac.

Again, the ultimate decision is yours. I wish you luck.

(By the way, Fiber supplements were my savior while I was waiting for the endoscopy/biopsy. It helped tremendously.)

cmom Contributor
cmom
Posted

And just a reminder that if you do decide on the EGD/biopsy, you must continue eating gluten until then. :angry:

Macnerd Newbie
Macnerd
Posted

Hello. I am in the same boat. But I am not going to wait. I'm gluten free for 36 hours now. WooHoo! My endoscope is scheduled but I started my new diet yesterday. What can it hurt? If you feel better then it's a win-win. The diagnosis still seems like it's not real to me. I've been sick since 2001 with no clear diagnosis. It's kind of a relief... but I'm nervous about the biposy. What if I start to bleed?

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itchygirl Newbie
itchygirl
Posted
... but I'm nervous about the biposy. What if I start to bleed?

The biopsies are real tiny. If you had acne as a kid you probably bled more from a popped zit :D . We're talking teeny little pinches here.

cupid Newbie
cupid
Posted

Agree you should not have to wait for medical care. My first gasto ordered upper GI and it took a month to get results which indicated celiac. They scheduled the biopsy but had to wait two months for appt and then another six wks for results. I called my favorite hospital out of the four in my city for a referral to another gastro. Notified my insurance was going for second opinion. I made a self referral for appt was seen w/in one wk and had biopsy the following wk w/ negative results w/in five days. My Dr was on vacation for two wks afterwards but kept in contact through his nurse. They ordered DQ2 & DQ8 testing which I had done this past Tues. Should get results this Friday. I'm allegic to 12 different antibiotics which makes medical care difficult for treatment and would need a diagnosis for Dr to order gluten-free meds since presciption plan won't cover w/out and most generic have gluten. Sometimes we have to do our own research, advocating and remember the Dr's work for us! Good Luck w/ your decision! Started gluten-free life style a few days ago and not as achy today, yeah!!

KristaleeJane Contributor
KristaleeJane
Posted
Agree you should not have to wait for medical care. My first gasto ordered upper GI and it took a month to get results which indicated celiac. They scheduled the biopsy but had to wait two months for appt and then another six wks for results. I called my favorite hospital out of the four in my city for a referral to another gastro. Notified my insurance was going for second opinion. I made a self referral for appt was seen w/in one wk and had biopsy the following wk w/ negative results w/in five days. My Dr was on vacation for two wks afterwards but kept in contact through his nurse. They ordered DQ2 & DQ8 testing which I had done this past Tues. Should get results this Friday. I'm allegic to 12 different antibiotics which makes medical care difficult for treatment and would need a diagnosis for Dr to order gluten-free meds since presciption plan won't cover w/out and most generic have gluten. Sometimes we have to do our own research, advocating and remember the Dr's work for us! Good Luck w/ your decision! Started gluten-free life style a few days ago and not as achy today, yeah!!

I have been sick for many years also, I had an Upper Gi done and they said everything was normal, then I had blood work, which came back, positive for celiac. Now I am waiting for the stupid biobsy, but I have started the diet even though I know I am supposed to wait, I can't wait. I have 24 hrs in and sooooo excited to feel better. I just think it is so weird that my Upper GI came back Normal, If I have celiac, but Yours didn't hmmmm, guess everyone is different.

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