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Bad Endoscopy Results :(


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21 replies to this topic

#1 bean

 
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Posted 19 January 2007 - 06:05 PM



Hey - I have some questions!

This morning I had an endoscopy and these are the findings:

The examined esophagus was normal.
The Z-line was irregular and was found thirty-six cm from the incisors.
The entire examined stomach was normal.
Atrophic mucosa was found in the 2nd part of the duodenum. Biopsies were taken with a cold forceps for histology.
The duodenal bulb was normal.


So... I don't know what to think. I have been gluten free since May 11, 2005. And I am *extremely* careful about it. I actually now give presentations on the gluten-free diet. Nothing that I eat, and no medication that I take, is anything where I haven't contacted the manufacturer. I check ingredients in a serious OCD sort of way. I don't eat where I am not sure that it is safe. :(

What is going on with my villi? :(

Since the beginning of November, I have had "esophageal spasms" - and the main point of the endoscopy was to try to determine what is causing that. The only thing that stops the intense pain of the spasms is a calcium channel blocker called "Norvasc" - and when I miss *one* pill, the pain is unbelievable within 24 hours. But - after the endoscopy, I received a printout that said, "No cause found for symptoms. Await pathology results."

Anyone know what the Z-line is, or (more importantly) what the significance of an irregular Z-line found thirty-six cm from the incisors is?

I am terribly, terribly afraid that my osteoporosis is never going to improve if my villi aren't healthy! :(

I came home from the appointment and just cried. I am so careful, I am cautious of every single thing I put in my mouth. Why isn't my body healing? :(

- Michelle


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~~~~~~~~~~~~~~~~~~~~~

Michelle :)

Positive blood tests 4/29/05 (tTG & IgA)
*Osteoporosis (at 32!)
*Heartburn/Reflux (*ouch!*)
*Lifelong battle w/depression
*Dental enamel didn't form right when I was little (cavities cavities cavities)
*Neuropsych analysis lists all sorts of learning disabilities - which may be attributed to brain injury from an old accident or may be from celiac, who knows!

Had biopsy May 11th, 2005 - villi are FLAT! :(
gluten-free since May 11th :)

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#2 Judyin Philly

 
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Posted 19 January 2007 - 06:45 PM

Michelle,
I don't have any answers for you. I'm just so sorry when I read your post.
All I can offer is a big HUG..
HOPE IT HELPS ALITTLE BIT.
JUDY
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Judy in Southern CA

#3 chrissy

 
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Posted 19 January 2007 - 06:47 PM

maybe some other food intolerances?
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Christine

15 year old twins with celiac, diagnosed dec. 2005
11 year old daughter with celiac diagnosed dec 2005
17 year old son with celiac gene

#4 2kids4me

 
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Posted 19 January 2007 - 08:43 PM

The Z- line is the point at which the esophagus meets the stomach. Another term to describe the Z- line is the squamocolumnar junction (the point where the lining changes from esophageal [squamous] to stomach [columnar]. In this area is the location of the lower esophageal sphincter.

I am pretty sure that I have read on some other threads about villous atrophy related to casein intolerance... or other food issues, not just gluten. I can check some other sites and I'll edit - add on - here, if no one else has posted about it

Sandy

EDIT - found the links - casein intolerance IS DEFINITELY linked to villous atrophy based on what I found:

Villous Atrophy.
This is discussed in the Medline abstracts found in the Educational Institution section below. For these people the casein milk protein causes the intestinal villi to flatten, much like it does when gluten is consumed by somebody that is intolerant to gluten.

http://www.centerofh...com/gluten.html

http://www.ncbi.nlm....p;dopt=Abstract

Forty-five duodenal biopsies from 33 children and 3 adult patients were maintained in organ culture for 24 h and exposed to various cow's milk proteins and gluten. In 10 of 11 celiac patients with a flat duodenal mucosa, and in 2 of 4 patients with partial villous atrophy, a significant reduction in the mean enterocyte height was found after in vitro gluten exposure, compared to culture in basic culture medium. Three patients had coexisting celiac disease and cow's milk protein intolerance. alpha-Lactalbumin and beta-lactoglobulin exhibited toxic effects on flat biopsies from two of these patients, and casein was toxic in one. In 10 patients with cow's milk protein intolerance, a significant reduction in enterocyte height was noted in one case with gluten, and in three patients with casein and lactoglobulin, whereas lactalbumin did not affect the tissues. In seven control patients having a normal duodenal mucosa, no in vitro influences were noted, whereas in four patients with partial villous atrophy, a toxic reaction to gluten was seen in one and a reduced enterocyte height was seen after lactoglobulin exposure in another. In vitro toxicity induced by gluten corresponded well with the diagnosis of celiac disease, whereas toxic reactions to cow's milk proteins during organ culture were inconsistent in cow's milk intolerance, except for cases in which a marked enteropathy was documented


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#5 Ursa Major

 
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Posted 19 January 2007 - 09:13 PM

I am sorry your villi don't appear to be all healed. I agree with Sandy, it could be a casein intolerance that is causing that. I also read that soy can cause blunted villi as well. You may need to eliminate other foods, just getting rid of gluten may not be enough.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#6 plantime

 
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Posted 19 January 2007 - 09:29 PM

Ah, Michelle, I'm so sorry. It seems to me that any food we are intolerant of will cause villi damage. That's just my opinion, mind you.
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#7 bean

 
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Posted 20 January 2007 - 05:15 AM

I know that villous atrophy can occur due to casein. I also found out that I'm seriously allergic to dairy (plus beef & gelatin) a couple of months before I was diagnosed with celiac disease. I also react to eggs and sesame - but not so intensely. I had the ELISA blood testing in March 2005. Since then, I have RARELY ingested any sort of dairy product. The last time I "cheated" with dairy was on Christmas, when I had some cheese (and became really emotionally upset) (but I also broke up with my boyfriend that day so it could have been that!) - I would think that the villi would have regenerated by yesterday, if it was the dairy.

No more "cheating" though. I am more than a little terrified of the cancer risks I'm looking at.

I thought I was doing so well :( I *never* risk exposure to gluten. I emailed my primary care doctor with these results but haven't heard from her. She's wonderful & brilliant, so I am very anxious to speak with her.

I am scared :(
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~~~~~~~~~~~~~~~~~~~~~

Michelle :)

Positive blood tests 4/29/05 (tTG & IgA)
*Osteoporosis (at 32!)
*Heartburn/Reflux (*ouch!*)
*Lifelong battle w/depression
*Dental enamel didn't form right when I was little (cavities cavities cavities)
*Neuropsych analysis lists all sorts of learning disabilities - which may be attributed to brain injury from an old accident or may be from celiac, who knows!

Had biopsy May 11th, 2005 - villi are FLAT! :(
gluten-free since May 11th :)

#8 Mango04

 
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Posted 20 January 2007 - 12:20 PM

Have you read this thread?

http://www.glutenfre...mp;#entry256480
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"Let food be thy medicine, and let thy medicine be food." - Hippocrates

#9 Ursa Major

 
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Posted 20 January 2007 - 12:26 PM

Another thought: How long were you sick before being diagnosed with celiac disease? It can take up to five years for the intestine to heal completely in some cases. Maybe you're just still healing.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#10 Carriefaith

 
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Posted 20 January 2007 - 09:55 PM

I'm really sorry that you aren't feeling well and that your villi aren't healing :( I hope that your doctor can help find a solution for you. Have the villi improved since the last time you had a biopsy?
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#11 tarnalberry

 
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Posted 20 January 2007 - 09:58 PM

I'm sorry to hear that. :( Do the results speak to at least some improvement since diagnosis? Any followup theories that they are going to pursue?
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#12 rez

 
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Posted 21 January 2007 - 06:47 AM

I'm so confused. Is it possible that someone can only react to casein and not gluten? Is it possible for a casein intolerance to cause a positive tTG? My son's tTG was positive, but his reactions to dairy, not just lactose (we used lactaid milk) were terrible. They were much worse than gluten. He would get ""D", terrible stomach aches, and multiple mouth sores. He had traditional allergy testing done and it's not that. Final question. Like in this woman's case who was diagnosed w/ Celiac, how do they know if it's gluten that flattened her small intestine or a DIFFERENT intolerance? It's so confusing. My son is doing a gluten challenge right now, but we have him off dairy. His lactose intolerance test was positive. I asked the GI if a casein intolerance could flatten the villi and he told me no, a flat out "NO". We are getting a second opinion. I would love to hear more about this topic. Can a casein intolerance stand alone, or does it have to go with gluten. Good luck to you and I feel your frustration.
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#13 tarnalberry

 
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Posted 21 January 2007 - 01:16 PM

Links to articles regarding cow's milk-sensitive enteropathy:
Cow's Milk-Protein-Sensitive Enteropathy at School Age

Evidence for increased apoptosis of duodenal intraepithelial lymphocytes in cow's milk sensitive enteropathy.

One thing to note is that this is described as a 'temporary' enteropathy, and it appears that elimination for a while, followed by reintroduction, does not cause damage to reoccur. Now, I think we all know that there may need to be more followup than might be done, and there is additional evidence (in one of the studies above) to suggest that it can go on longer, but that it is quite rare.

Anyway, that's the term to search for, if you want to look up more evidence.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#14 Rachel--24

 
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Posted 21 January 2007 - 02:59 PM

Michelle.....I could be wrong (dont have the best memory) but did you have a problem with candida awhile back?? If so you might find that link that Mango posted interesting.

I dont have celiac genes and I dont have villous atrophy but suffer from severe leaky gut....even after gluten and dairy free. Eventually I ruled dairy out as a cause because I found out I could tolerate just one brand of organic ice cream and ate it by the truckloads. Cheese is another story. :(

I have candida pretty bad so stopped eating the ice cream due to the sugar and lactose. I've never been able to eat cheese since I first got sick. I think because its high in mold and really causes problems with the candida. One slice of cheese can mess me up pretty good.
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Rachel

#15 bluejeangirl

 
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Posted 22 January 2007 - 06:49 AM

I was researching some things last night on digestive health and came across this article.

http://www.westonapr...ion_primer.html
The Long Hollow Tube: A Primer on the Digestive System

Here is a paragraph from the article that has me alittle confused. I thought you might want to read it.

It is always difficult to draw conclusions from epidemiological data, but there is one study that should serve as a warning to the fiber brigade. Researchers fed four groups of rats on diets high in alfalfa, wheat bran, cellulose and pectin for six weeks and then examined the jejunum and the mid-colon using electron microscopy. All groups suffered from mucosal surface changes that could interfere with nutritional absorption. Bran provoked the least severe changes, followed by cellulose followed by pectin, followed by alfalfa. Those consuming pectin and alfalfa suffered from severe degeneration of the intestinal villi (Am J Clin Nutr 1981 Feb;34(2):218-28).

I would of thought that this goes against what I believed but I just read that morning from a book I have called Optimal Digestive Health by Trent W. Nichols, MD. Its a good book BTW. In it has a chapter called Repairing the GI Tract.
It stated the following.... Permavite (name brand) fiber contains an insoluble fiber, cellulose, which seems to decrease and clear toxins. In powder form it mixes well with water and has a mild flavor. The general recmmendation is to use this prior to two meals a day. It is specifcally formulated for intestinal permeability, based on observations made by Dr. Leo Galland that different kinds of fiber affect permeability and that soluble fibers tend to increase it. So this formula is based on insoluble cellulose and has other components in it to sooth and heal the GI tract. Cellulose products available in drugstores in Citracel and Fiber-con. Permavite contains speific added nutrients and is available from allergy Research Group.

So I may have to try this for awhile to see if that helps with my getting the GI tract healed. Oh and another tip I read was to use MSM, a form of the mineral sulfur, enhances the body chemistry probably by raising glutathione levels in all the cells. This helps to prevent oxidative stress throughout the GI tract. It is supposed to prevent pathogens-bacteria, yeast, and parasites- from adhering to the bowel wall, so that the body can flush them out much more easily.

So I thought I pass this along, you never know what works.

Good luck,
Gail
Gail
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Gluten Free since Jan. 06
Gluten intolerant. DQ 0301 DQ 0602
Lactose intolerant.




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