Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Should I Wait For The Test?

DrewMa

By DrewMa
in Doctors

Recommended Posts

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748
    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Lkg5
      Unexpected gluten exposure risk from cultivated mushrooms

      By Lkg5 · Posted

      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Is it gluten?

      By Scott Adams · Posted

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.