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21 replies to this topic

#16 GottaSki

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Posted 21 November 2012 - 06:22 AM

Good Morning Bill-

A couple thoughts:

I tthink I am remembering correctly that you had removed gluten for several weeks prior too both blood and biopsy. It is possible this was enough time to bring all blood levels within normal range.

Your doctor noted inflammation in the small intestine during the endo - have you seen the path report yet? Stage 1 and 2 are not specific to Celiac, but together with your dietary response sure indicate Celiac Disease.

Did you have genetic testing. Genes alone aren't a basis for diagnosis, but are another piece of the puzzle.

As for follow up - another endo at a year gluten-free to check for healing of the noted inflammatory conditions would be wise. Periodic nutrient testing with either celiac disease or NCGI also seems like a good idea. For you I would add DGPs to those nutritional tests.
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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 - MCAS

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


ALWAYS independently research health related information found on internet forums/blogs - using Peer Reviewed Publications...

along with input from the best medical professionals you can find.


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#17 SMDBill

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Posted 21 November 2012 - 06:50 AM

Lisa,

I had been gluten-free for 8-10 weeks before the blood work and endo. What he saw during the scope was duodenitis and erosive gastritis. The biopsies came back negative for H pylori infection and negative for celiac. I do not have the results and I only got that info from the biopsies from his nurse. He was supposed to call me back yesterday to discuss the results but he never called. I'll try again today.

My dietary response was quite remarkable to being gluten-free. No more oily stools, loose bowels, clear skin, no headaches (except from the Prilosec OTC he had me take for 2 weeks to help the erosive gastritis!), more energy, regular bowel movements (not 5-8 per day like before), better muscle feeling, less gas and bloating, and a few other positive improvements. Whether celiac or intolerance, my body improved enough to let me know something was deeply wrong and removing gluten fixed it.
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#18 GottaSki

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Posted 21 November 2012 - 06:55 AM

I agree - you are not alone being either/or. My kids test negative. One has an "official" dx, one calls himself celiac and one calls himself intolerant. All three live better lives gluten-free.
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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 - MCAS

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


ALWAYS independently research health related information found on internet forums/blogs - using Peer Reviewed Publications...

along with input from the best medical professionals you can find.


#19 Celiac Mindwarp

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Posted 21 November 2012 - 07:43 AM

My blood and biopsy were both negative, but I had been gluten free or light beforehand.

I am still calling myself celiac. I am happy to explain in more detail if anyone asks. I am quite happy to say that the tests dont work if you can't eat gluten.

I have also now seen a GI who fully supports my decision to be gluten-free. He has referred me to a nutritionist. He also gave me advice on getting my kids tested, and did a genetic test. He discussed NCGI.

I was disappointed if not surprised when my tests were negative.

But I knew my response to the diet told me what I really needed to know.

I was feeling so much better, and hadn't been glutened for ages, and started to question it all. 'Luckily' I got glutened at the weekend, so I am convinced now.

The lack of damage to the villi is good news, honestly.

Good luck, it'll be interesting to see how we both get on next x
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#20 GFinDC

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Posted 21 November 2012 - 09:55 AM

HI Bill,

The study about non-celiac wheat sensitivity was just published in Jul-2012. We really don't have any more knowledge about it yet to say what the effects of it are, or how it progresses etc. How it affects other parts of the body etc are totally unknown at this point. Some of the patients in the study made IgA or IgG and some didn't show any. What it all means is not clear yet. Perhaps some of these people are pre-celiac and would develop celiac disease in time, we don't know.

Some had reactions they identified as allergic.

It's a bit of a situation for sure. People try the gluten-free diet and find they feel better. But then they want testing to confirm but they are already gluten-free and the tests don't work. Or they may have one of these 2 newly identified conditions but there is no standard test protocol for them. But at least their doctors can tell them they have IBS and give them some anti-depressants. :(

We still don't have the old Star Trek tricorder available in medicine. You could do your own testing tho. Staying gluten-free for 3 to 6 months and then doing a gluten challenge would be a good test. Maybe eat pizza and drink beer for a week or 2 and see if it causes symptoms to return.

http://www.ncbi.nlm....pubmed/22825366

//
Patients with WS alone were characterized by clinical features very similar to those found in celiac disease patients. Patients with multiple food sensitivity were characterized by clinical features similar to those found in allergic patients.CONCLUSIONS:Our data confirm the existence of non-celiac WS as a distinct clinical condition. We also suggest the existence of two distinct populations of subjects with WS: one with characteristics more similar to celiac disease and the other with characteristics pointing to food allergy.Am J Gastroenterol advance online publication, 24 July 2012; doi:10.1038/ajg.2012.236.
///
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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

#21 GottaSki

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Posted 21 November 2012 - 01:05 PM

We still don't have the old Star Trek tricorder available in medicine.


Please include a new food synthesizer when you send the requisition for your tricorder to Star Fleet Command - ours is currently malfunctioning - all of it's products have trace amounts of gluten -- it is my understanding that the new model, called a Replicator, has been programmed to never allow replication of these harmful proteins ;)
  • 0
-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 - MCAS

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


ALWAYS independently research health related information found on internet forums/blogs - using Peer Reviewed Publications...

along with input from the best medical professionals you can find.


#22 GFinDC

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Posted 21 November 2012 - 03:52 PM

Please include a new food synthesizer when you send the requisition for your tricorder to Star Fleet Command - ours is currently malfunctioning - all of it's products have trace amounts of gluten -- it is my understanding that the new model, called a Replicator, has been programmed to never allow replication of these harmful proteins ;)


May as well wait a while, I hear the replicaters are on back order too. Except for the ones at Star Gate command, they have more than enough! I'm sure you could get one there cheap! :)
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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


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