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How Long Challange Is Recomended Before Biopsi?


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#1 Mum in Norway

 
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Posted 27 July 2013 - 09:29 AM

I got a letter this week saying I'm scheduled for biopsi at the hospital, some day early in septemer.

It also says I need to eat 'normally' (what does that mean? ) for the last TWO MONTHS prior to the apointment!

Is that really nessesery? I haven't been totally glutenfree otther then short periods, but i haven't had much gluten for years. But I'we been told that 'normal' diet the last two WEEKS before biopsi is enough?

I started trying to eat 'normally' today, as we came home from a familly hollyday this morning, but I just get really sick and throw up... Don't know how I'll be able to do this...


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#2 SusanB26

 
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Posted 27 July 2013 - 10:21 AM

I'm sorry you are having to go through this.  I had a similar experience.  Allergist says "try gluten free".  After being gluten free and slowly becoming asymptomatic my blood work showed the prescence of antibodies, but very low.  I then did a gene test which came back positive for the celiac gene (and an intolerance gene as well on the other side). There is autoimmune issues in my family, myself icluded.  If I get achy, tired and just plain old sick like I am getting a flu, I can trace it back to some gluten that I didn't know I ate (mentos for example).  I have decided that rather than eat gluten for 2 weeks and feel horrible, while trying to take care of my family and work, I am simply living life as a celiac and accepting that I most likely have celiac disease.  I haven't looked back and don't plan to.  The best thing I ever did was go gluten free.  I just can't deal with feeling horrible along with the skin issues that come with it. 

 

I hope you figure out what you are going to do.  I really feel for you.


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#3 AlwaysLearning

 
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Posted 27 July 2013 - 11:17 AM

Is there a reason you are seeking out a confirmed diagnosis of celiac? I ask because there seem to be plenty of downsides to being confirmed without many ups. 

On the upside, if you were willing to do the math to figure out the differences in costs of gluten free foods vs. non, you could have some more tax deductions.

On the downside, you could have to pay higher health insurance rates, you could have a false negative on your test (villi damage is often patchy and can be missed), your allergy may not have progressed to the point of vilii damage yet, or you could have damage to your large intestine or brain rather than the small.

If there were some sort of medicine that one needed from their doctor in order to treat a gluten allergy, I'd understand why a biopsy would be needed, but because we are responsible for our own diets ...

I say that unless you have to go to prison and need a confirmation in order to get gluten-free meals, think twice before retoxing.

 


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#4 jaywalker

 
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Posted 27 July 2013 - 11:43 AM

Is there a reason you are seeking out a confirmed diagnosis of celiac? I ask because there seem to be plenty of downsides to being confirmed without many ups. 

On the upside, if you were willing to do the math to figure out the differences in costs of gluten free foods vs. non, you could have some more tax deductions.

On the downside, you could have to pay higher health insurance rates, you could have a false negative on your test (villi damage is often patchy and can be missed), your allergy may not have progressed to the point of vilii damage yet, or you could have damage to your large intestine or brain rather than the small.

If there were some sort of medicine that one needed from their doctor in order to treat a gluten allergy, I'd understand why a biopsy would be needed, but because we are responsible for our own diets ...

I say that unless you have to go to prison and need a confirmation in order to get gluten-free meals, think twice before retoxing.

 

 

 

I disagree. I don't think you can possibly predict all the future sittations where Dx would be a big advantantage.

Here in Britain, the fact I can't get gluten free food on prescription (and can't afford it otherwise) without a clear Dx of celiac disease has turned into the least of my worries. It's meant that I don't get any of known co-morobidities taken seriously either, when it matters. And don't forget, they're discovering new co-morbities all the time.

So i say: don't turn back when you'tre so close to getting that Dx.  But I , too would question if two weeks on a normal diet is enough. And sorry, I really don't have the answer.


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#5 Mum in Norway

 
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Posted 27 July 2013 - 12:35 PM

Is there a reason you are seeking out a confirmed diagnosis of celiac? I ask because there seem to be plenty of downsides to being confirmed without many ups. 

On the upside, if you were willing to do the math to figure out the differences in costs of gluten free foods vs. non, you could have some more tax deductions.

On the downside, you could have to pay higher health insurance rates, you could have a false negative on your test (villi damage is often patchy and can be missed), your allergy may not have progressed to the point of vilii damage yet, or you could have damage to your large intestine or brain rather than the small.

If there were some sort of medicine that one needed from their doctor in order to treat a gluten allergy, I'd understand why a biopsy would be needed, but because we are responsible for our own diets ...

I say that unless you have to go to prison and need a confirmation in order to get gluten-free meals, think twice before retoxing.

 

The main resaon for me to go for a confirmed diagnosis is that in Norway you get monthly finacial suport, to compancate for the extra cost of glutenfree food, the equivalent of about 350 dollars a month. But only if you have a positive biopsi. Also, my 3 year old girl has had issues with gluten, and if I have a propper diagnosis, it will be easyer to find out if she has celiac, gluten intolerance or somehting else entirely


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#6 GottaSki

 
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Posted 27 July 2013 - 01:28 PM

I got a letter this week saying I'm scheduled for biopsi at the hospital, some day early in septemer.

It also says I need to eat 'normally' (what does that mean? ) for the last TWO MONTHS prior to the apointment!

Is that really nessesery? I haven't been totally glutenfree otther then short periods, but i haven't had much gluten for years. But I'we been told that 'normal' diet the last two WEEKS before biopsi is enough?

I started trying to eat 'normally' today, as we came home from a familly hollyday this morning, but I just get really sick and throw up... Don't know how I'll be able to do this...

 

Hello!

 

The recommendations from the US Celiac Centers are between 6-12 weeks of at least a slice or two of glutenous bread.  Perhaps trying to eat toast or a grilled cheese (if you can tolerate dairy) late in the day -- sometimes this helps get folks thru the challenge.

 

I agree with Jay...there are many reasons to have a proper diagnosis if possible.

 

Should it not be possible for you to ingest gluten at all...call your doctor to discuss diagnosis based on inability to function when gluten is consumed.

 

Oh...not sure if you have already had the full Celiac Antibody Panel...but do make sure they run the blood at the same time as the endoscopy so you don't have to endure any future challenges and can officially go gluten free as soon as the biopsies have been collected.

 

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 :)


#7 Mum in Norway

 
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Posted 27 July 2013 - 03:39 PM

Hello!

 

The recommendations from the US Celiac Centers are between 6-12 weeks of at least a slice or two of glutenous bread.  Perhaps trying to eat toast or a grilled cheese (if you can tolerate dairy) late in the day -- sometimes this helps get folks thru the challenge.

 

I agree with Jay...there are many reasons to have a proper diagnosis if possible.

 

Should it not be possible for you to ingest gluten at all...call your doctor to discuss diagnosis based on inability to function when gluten is consumed.

 

Oh...not sure if you have already had the full Celiac Antibody Panel...but do make sure they run the blood at the same time as the endoscopy so you don't have to endure any future challenges and can officially go gluten free as soon as the biopsies have been collected.

 

Hang in there :)

 

Thank you!

It seems I can only keep small amounts of glutenous food down, so I'll try that for the weekend, and then call te hospital on monday to ask if they think that is enough.

 

I have had a full celiac antibody test done. It was positive only for DGP- IgG, and not a very strong positive, but as I have not had much gluten the last few years, and my response to gluten, my doctor is certain I have celiac, it is only a matter of prooving it. It could be gluten intolerance, but that would not explain the positive IgG. Also, DGP-IgG is suposed to be very specific for celiac


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When I get sad, I stop beeing sad and be awesome insted.

True story.


#8 GottaSki

 
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Posted 27 July 2013 - 03:45 PM

Thank you!

It seems I can only keep small amounts of glutenous food down, so I'll try that for the weekend, and then call te hospital on monday to ask if they think that is enough.

 

I have had a full celiac antibody test done. It was positive only for DGP- IgG, and not a very strong positive, but as I have not had much gluten the last few years, and my response to gluten, my doctor is certain I have celiac, it is only a matter of prooving it. It could be gluten intolerance, but that would not explain the positive IgG. Also, DGP-IgG is suposed to be very specific for celiac

 

I agree...hope the scope provides the proof the doctor is looking for...do be sure to talk to him/her about the level of discomfort from ingesting gluten.


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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 :)


#9 Scarletgrrrl

 
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Posted 28 July 2013 - 04:34 AM

When I realised it was gluten that was responsible for my health issues I stopped it immediately. I then went to a gastro. who suggested I reintroduce it 2 weeks prior to my endoscopy. A friend who is diagnosed with celiac introduced it 6 weeks prior to her endo. and after reading the uni of chicago celiac centre's website, they suggest 6-8 weeks. I made the decision to reintroduce it 7 weeks prior to my endoscopy. I didn't want to go through this whole process again. I am glad that I didn't do just 2 weeks as I ended up being quite sick at the 2 week mark and wouldn't have been able to go through the endo. then anyway. I was sick for the whole 7 weeks but I don't regret the whole process. I have been off gluten for 2 weeks again now.


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#10 BelleVie

 
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Posted 29 July 2013 - 02:05 AM

When I realised it was gluten that was responsible for my health issues I stopped it immediately. I then went to a gastro. who suggested I reintroduce it 2 weeks prior to my endoscopy. A friend who is diagnosed with celiac introduced it 6 weeks prior to her endo. and after reading the uni of chicago celiac centre's website, they suggest 6-8 weeks. I made the decision to reintroduce it 7 weeks prior to my endoscopy. I didn't want to go through this whole process again. I am glad that I didn't do just 2 weeks as I ended up being quite sick at the 2 week mark and wouldn't have been able to go through the endo. then anyway. I was sick for the whole 7 weeks but I don't regret the whole process. I have been off gluten for 2 weeks again now.

So Scarletgrrrl, your biopsy was positive?  I had my biopsy today and am now nervously awaiting the results, after doing a six week challenge! I'm SO glad to have that over with! 


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#11 greenbeanie

 
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Posted 29 July 2013 - 03:09 AM

I was gluten-light for about 15 years (not intentionally avoiding gluten, just knowing that bread and pasta always made me sick), then did a six-week challenge with about two slices of bread per day. My tests were negative, despite a long history of symptoms and celiac in a first-degree relative, plus a rash that the GI immediately identified as looking like a gluten rash when she first saw me. My hair started falling out and my tongue swelled up during the challenge and is still swollen after a month strictly gluten-free. In retrospect, I wish I'd either done a longer challenge or forced myself to eat more gluten per day. I felt very sure that my biopsy would be positive, especially given my reaction to the challenge, but it wasn't (though the challenge itself caused gastritis and esophagitis, which went away pretty quickly).

I really hope you get a clear answer! Good luck.
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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#12 Mum in Norway

 
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Posted 29 July 2013 - 01:18 PM

I don't know how I can do this. Even if I'm willing to go throug it at get really ill, I just keep throwing up. I'm only a few days in, and I'm at the point where I throw up if I have a glas of wather. Can any meds help for that? To keep it down, to make me even more ill?

It feels quite surreal even asking this, it's a little insane we all have to go throug this, hoping to get a name for our health problems.

Good luck to all af you in the same situation, it would be horrible to do all this and not get any the wiser..


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When I get sad, I stop beeing sad and be awesome insted.

True story.


#13 GottaSki

 
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Posted 29 July 2013 - 05:33 PM

I don't know how I can do this. Even if I'm willing to go throug it at get really ill, I just keep throwing up. I'm only a few days in, and I'm at the point where I throw up if I have a glas of wather. Can any meds help for that? To keep it down, to make me even more ill?

It feels quite surreal even asking this, it's a little insane we all have to go throug this, hoping to get a name for our health problems.

Good luck to all af you in the same situation, it would be horrible to do all this and not get any the wiser..

 

Call your doctor and report the result of returning gluten to your diet.

 

There are a few minor management of accidental gluten or cross contamination tricks...but nothing can stop the immune system from responding to gluten and I have no idea what can be utilized to help the challenge other than eating late in the day and no more gluten than necessary.

 

Make sure you are drinking water consistently throughout the day and do try to call your doctor to explain in detail what is happening.

 

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 :)


#14 Mum in Norway

 
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Posted 30 July 2013 - 06:10 AM

I called the hospital today, to ask how much gluten i need to ingest. They had no idea, and asked me to call my doctor. He is on a summer hollyday for 2 more weeks, but I talked to another doctor there. She said to keep eating the way I had before the first blood test, even thoug I told her I diden't use to eat alot of gluten. She said that if my intestine was damaged they would find it anyway, even if I went gluten free now.

But even I know thats not right...


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When I get sad, I stop beeing sad and be awesome insted.

True story.





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