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Confusion About Gluten Intolerance


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#16 kareng

 
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Posted 11 December 2012 - 07:20 AM

I sure wouldn't. You seem to be getting plenty & as more research comes out, more Drs are recommending less gluten than 2 slices of bread anyway. Some are 1/2 slice/day & one oft-quoted celiac center is saying a single cracker/day.


I think, if I were new to this forum, I would trust a Celiac research facility over the word of some guy posting on an internet forum. Also, a doctor is more likely to read info from a medical center than posts on an internet forum. Univ of Chicago has a lot of info on thier site and it is easy to read. That is why I often post links to it.
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#17 GottaSki

 
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Posted 11 December 2012 - 07:30 AM

As regards the "how much gluten/time is needed for a challenge issue, this is the way I see it and people's mileage will vary.

There doesn't seem to be an agreed upon amount of gluten or time frame by "the experts". In looking for the latest recommendations, I see studies from the mid 2000's, touting the 2-4 slices of bread a day for a month or 2, and this newer one that involved 20 participants that concluded that less gluten/time was sufficient.

http://gut.bmj.com/c...302196.abstract

Just from reading here of different folk's experiences for the last 7 or 8 years, the response to the challenge seems to vary about as much as all of our individual responses to the disease and the diet itself. I've seen people who follow the gluten-free diet after a diagnosis, go in for a recheck and are still positive on the bloods or biopsy. Others struggle through a challenge of at least 2 months, and still fail to get a positive test result despite horrible symptoms when they eat the slightest amount of gluten.

At this point, and it will most likely change as more information/studies come in, all we can do is put what we know so far out there and then people need to make the decision that works best/feels best for them. (and hopefully with the guidance of a realistic doctor) Personally, I think there is so much still not known about Celiac, gluten intolerance, etc. that it is impossible, at least for me, to give specific directives on this issue.


Well said Patti. If there is one certainty in Celiac Disease it is that we all present, test and respond to a the removal of gluten differently.

Hang in there Sarah - if you haven't had a full celiac panel done - have your doctor order now. Meg was right - possitive blood work can help answer your questions.

Should all tests be negative - still remove ALL sources of gluten for at least three months - six is better as elimination is the only test for non-celiac gluten intolerance which shares many symptoms with celiac disease.
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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 :)


#18 Sarahsmile416

 
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Posted 11 December 2012 - 10:38 AM

Hi Sarah,
Did you have the blood panel done? I didn't seem to see that. Knowing you want to get pregnant, I would personally want to be off gluten immediately. if you have a positive blood panel, I don't see the harm in going off. Good luck!
-Megan


Hi Megan-

I did have blood work done...twice, although I am not sure if it was a complete panel or not as my doctors never have me the specific numbers...they just told me I was "negative" for the antibody.

It was when I went to a GI doctor with my symptoms who told me that with my symptoms and underlying issues (Type 1 Diabetes AND vitiligo) that she was not convinced I did not have celiac and wanted to do the endoscopy...she even intimated that perhaps a complete true panel of celiac was not done. Suffice it to say, it was not until I went to her that I actually felt like a doctor was truly listening to me and doing something to help me.
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#19 GFinDC

 
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Posted 11 December 2012 - 10:52 AM

Hi Sarah,

They should do at least 4 biopsy samples from different areas.

http://www.scienceda...10707092437.htm
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#20 tom

 
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Posted 11 December 2012 - 11:48 AM

I think, if I were new to this forum, I would trust a Celiac research facility over the word of some guy posting on an internet forum. Also, a doctor is more likely to read info from a medical center than posts on an internet forum. Univ of Chicago has a lot of info on thier site and it is easy to read. That is why I often post links to it.

Well that's a bit off-topic & curiously defensive.
Someone posted that "often ppl say 2 slices/day" & I add the single cracker quote from your fav site & that's a bad thing?

(Sarah had asked whether we'd "recommend amping up the ingestion of gluten before the test" after having explained that she's never been gluten-free - it's not a "re-introducing gluten" situation - it's a "don't stop eating gluten yet" situation.)
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#21 Sarahsmile416

 
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Posted 11 December 2012 - 12:23 PM

Hi Sarah,

They should do at least 4 biopsy samples from different areas.

http://www.scienceda...10707092437.htm


Thanks so much for the link...that was very informative - I will share that with my doctor and make sure she does at least that!

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#22 kareng

 
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Posted 11 December 2012 - 12:59 PM

Sorry. I thought I had put this link on here earlier.



http://www.curecelia...-celiac-disease


"How much gluten should be consumed prior to being screened for celiac disease?

It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test or biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional."
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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#23 Sarahsmile416

 
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Posted 11 December 2012 - 08:18 PM

Sorry. I thought I had put this link on here earlier.



http://www.curecelia...-celiac-disease


"How much gluten should be consumed prior to being screened for celiac disease?

Its best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test or biopsy. This is often referred to as a gluten challenge and should be done under the care of a medical professional."


Well, I am definitely doing that! For the most part, I have done pretty well. I think my body gets used to the forms of gluten I eat all the time (like bread and crackers). It's when I ingest a lot of either or I am eating a form of gluten my body is not used to, it revolts. I should say, that I still wake up with headaches most mornings, so I can't say I am not symptom free...just mostly free from the symptom I find most unpleasant.

Don't know how normal this experience is?? I feel like this gluten challenge should be more unpleasant.
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#24 tom

 
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Posted 12 December 2012 - 12:23 PM

...
Don't know how normal this experience is?? I feel like this gluten challenge should be more unpleasant.

I think it's safe to say it'd be more unpleasant if you were re-introducing gluten after feeling increasingly healthier during weeks or months 100% gluten-free. (Slight assumption in there on it being celiac)

You did say you never really went gluten-free, right? That'd be why it's not particularly unpleasant.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#25 Sarahsmile416

 
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Posted 12 December 2012 - 05:55 PM

I think it's safe to say it'd be more unpleasant if you were re-introducing gluten after feeling increasingly healthier during weeks or months 100% gluten-free. (Slight assumption in there on it being celiac)

You did say you never really went gluten-free, right? That'd be why it's not particularly unpleasant.


Yes, I have not gone completely gluten free yet....so I guess that makes sense.
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