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Really Scared Of A Gluten Challenge, I Need Some Advice Quick


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7 replies to this topic

#1 Ikgbrd

 
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Posted 26 June 2013 - 02:01 PM

So I went to see my GI for the first time today after about three or four weeks off gluten (on the recommendation of my family doctor.) Though I had an elevated level of deamidated gliadin IgA, they told me that it was odd that nothing else on my celiac panel was abnormal and it means that it might not be celiac. They insisted that I do a gluten challenge and get an endoscopy in two weeks. I'm terrified to do that though.

 

Though I've been mostly gluten free for three or four weeks, last week I ate some chicken wings that I'm pretty sure were contaminated, and the next night I had diarrhea all night long. Since then my stomach's been really sensitive again and I was even hit with another bought of diarrhea a few days ago. Perhaps it wasn't eating the chicken that caused my system to start acting up again, but the thought that even that little gluten could've caused it scares me. I can't go two weeks with diarrhea all the time, I have a job and a life, and my stomach problems are disruptive enough as it is. I asked the GI if they could possibly rush the endoscopy because I'm still having some clear symptoms, but they told me that they couldn't.

 

I'm strongly considering just staying gluten free on my own for a few more months and seeing if any more improvements happen. My second week gluten free I felt amazing, and maybe I just need to take some more time to heal. I know it'd be better to test now rather then later, but I can't just put my life on hold living in fear of diarrhea or vomiting every day. Either way, I need to decide quickly because my endoscopy is in two weeks if I don't cancel. How did you guys react to a gluten challenge? What should I expect? I really need some help.


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#2 GottaSki

 
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Posted 26 June 2013 - 02:30 PM

If you are reacting strongly after removing gluten -- I would highly suggest going forward with the endoscopy with or without the gluten challenge.  This test can provide a lot of useful information about the status of your upper digestive tract -- do make sure they take 6-8 samples of the small intestine -- not all GIs do this -- I'll check back later to see if you want more detail -- I have a great paper regarding proper endoscopy practices for celiac disease -- but the link is on another computer.

 

If you can tolerate a small amount each day do so -- most major Celiac Centers recommend the equivalent of 1-2 pieces of gluten containing bread.  Perhaps have a grilled cheese (if you don't have a dairy issue) each evening???

 

Hang in there :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 Deaminated Marcus

 
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Posted 26 June 2013 - 05:23 PM

To me, your DGP - IgA test is valid.
As others have said before you don't have to be positive on all the tests on the panel.
That is lack of knowledge on the doctor's part.

Here is some information on the DGP - IgA

sensitivity: 82-96%

specificacy: 93-96%

http://www.worldgast...es/2012_Celiac Disease_long_FINAL.pdf

Here is another article about DGP-IgA
http://www.ncbi.nlm....pubmed/22643316
 


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#4 Ikgbrd

 
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Posted 27 June 2013 - 01:14 PM

Do you think the GI would be willing to do an endoscopy while I'm not on gluten? They seemed very insistent that I do this even as I explained my doubts and how this we be considering how much I work. I can't afford to miss that much and my managers will only be so understanding.

I'm worried I I tell them I'm not on gluten they just won't do it. But on the other hand if I don't tell them I might get misdiagnosed and they won't do it again. I just really don't want to risk gluten. I'm scheduled to work five doubles for the next few weeks, and I just can't do that if I'm throwing up or plagued by diarrhea.
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#5 GottaSki

 
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Posted 27 June 2013 - 01:31 PM

The longer you are gluten-free...the less accurate this initial data is.  It really is up to you...I have heard of GI's going forward without the challenge when it really is impossible for the patient to consume gluten without great distress. 

 

Are you particularly partial to this GI? 

Is he/she the best Celiac Disease GI where you live? 

For decades the rules have been set -- gluten challenge then biopsy, but these rules are changing. 

 

Severe damage from Celiac is not going to resolve overnight, but the best analysis does come while eating gluten -- here is the key -- you have already removed gluten -- my vote is to get the endo just as soon as possible -- again...this is my opinion.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#6 Ikgbrd

 
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Posted 27 June 2013 - 05:49 PM

I've actually never even talked to the actual GI. I was refered there by my family doctor and my appointment ended up being with the nurse practitioner. She consulted with him while I was there, but didnt let me speak with him personally. I asked if they could rush the endoscopy bit she said that they were booked until July 10th, which is when I'm scheduled. I don't even think I have enough time to eat the proper amount of gluten for it to really show.

I'm pretty frustrated with all of my doctors at this point.
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#7 GottaSki

 
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Posted 28 June 2013 - 06:31 AM

I've actually never even talked to the actual GI. I was refered there by my family doctor and my appointment ended up being with the nurse practitioner. She consulted with him while I was there, but didnt let me speak with him personally. I asked if they could rush the endoscopy bit she said that they were booked until July 10th, which is when I'm scheduled. I don't even think I have enough time to eat the proper amount of gluten for it to really show.

I'm pretty frustrated with all of my doctors at this point.

 

Given this info -- I suggest eating gluten if you can tolerate it until the endo.  If they asked if you continued to eat gluten, answer "as much as I could tolerate".  

 

You are correct that two weeks isn't much time for a challenge...but you also have not been strictly gluten-free for very long.  My vote remains get the endoscopy done sooner rather than later to gather data that is close to the removal of gluten as possible.  If you are having a hard time ingesting gluten right now -- this will only get worse with time gluten-free -- thus doing a longer gluten challenge in the future even more difficult for you.

 

Good Luck to you...let us know how it turns out or if you have any more quesitons :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 Ikgbrd

 
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Posted 03 July 2013 - 11:13 PM

I've decided I'm definitely not going back on gluten for this test. Even without it I've suffered from diarrhea and abdominal pain this last week, which is starting to ease up finally. I'm just not willing to put myself through the beginning healing process again.

I've been taking nortryptline lately, which has been helping with the diarrhea a lot. It was originally prescribed to me a year ago when my doctors diagnosed IBS, and though it stops working if I use it too regularly, it helps if I take it every other week or so. Is anyone else hear familiar with this drug? Is it harmful if its used by someone with celiac?
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