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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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bean

Bad Endoscopy Results :(

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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,

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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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.centerofhealth.com/gluten.html

http://www.ncbi.nlm.nih.gov/entrez/query.f...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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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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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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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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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'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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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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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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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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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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I was researching some things last night on digestive health and came across this article.

http://www.westonaprice.org/moderndiseases...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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Thank you to everyone who has replied.

About Candida - yes, I did read the link - and find it very interesting. I had a yeast infection for 18 months - and Candida for who knows how long.

I'm still waiting to talk to my gastroenterologist about the results. I haven't had the chance to talk to him for even a second after the procedure. And, obviously, I am very anxious. Hopefully I will get a call from him soon.

I spoke with my general practitioner - after emailing her the results - and she said that, it looks like refractory sprue. I'm not sure how familiar you guys are with that so I'm going to quote the section on it from the book, "Celiac Disease" by Peter Green.

" I've been really good about the diet - I watch everything I eat. I do eat out a lot, but only where I know I'm safe... But my last biopsy was still totally flat. I don't know what I'm doing wrong or what more I can do. Maybe stop eating. (Anonymous, 50)

Primary refractory sprue is the term used for patients with celiac disease who have ongoing diarrhea and persistent villous atrophy after going on a gluten-free diet for at least six months and in whom pancreatic insufficiency, bacterial overgrowth, microscopic colitis, and small intestinal lymphoma has been ruled out. This is mainly a diagnosis of exclusion. It is not just the persistence of villous atrophy in a patient who is otherwise doing well with the diet.

Some patients initially appear to do extremely well on the diet and then relapse despite compliance. This is secondary refractory sprue. In these patients, refractory sprue develops during the course of celiac disease, but in others the cause is unclear. Studies have been done to determine whether these patients actually have celiac disease. In terms of pathology, both conditions are similar.

Refractory sprue can have serious consequences - one is malignancy. Some patients with refractory sprue have abnormal lymphocytes (white blood cells), called clonal lymphoctyes. Patients with refractory sprue are also seen with clonal proliferation. If clonal lymphocytes are present, patients may progress to lymphoma.

Patients with refractory sprue may need hospitalization and treatment with intravenous fluids and nutrients as well as antidiarrheal agents. Many receive steroids, immunosuppresive therapy, and antibiotics.

After eliminating any other possible reasons for the condition - double-checking the diagnosis, ruling out dietary indescretion and bacterial overgrowth, and using pancreatic supplements - drugs such as cyclosporines and azathioprone (Imuran) are used as treatment for patients with refractory sprue. They have fewer side effects than steroids."

Needless to say, if it is refractory, not happy news. I do not have pancreatic insufficiency, as I have taken pancreatic enzymes in the past with no benefit. I was tested for bacterial overgrowth last year and that's not it. And I'm pretty sure that I don't have microscopic colitis. (Wouldn't I know on that one?) So, I'm waiting to get the small intestinal lymphoma ruled out. (Yikes.)

Obviously there could be other food intolerances that I don't know about. But I do not have active Candida now.

What worries me the most is that I haven't had a reaction (i.e. "glutened") since last June. And I developed a pretty bad depression in August - which (now that I know what's going on with my villi) leads me to believe that this has been going on for some time. If I *do* have refractory sprue, it must be the *secondary* refractory sprue, because I was doing really well for a while. But in August, for whatever reason, I started really breaking down and could hardly function. By November, I was crying every single day (to the point of sobbing most days). I started taking anti-depressants again November 1st (Wellbutrin).

I really don't know what is going on now. I do believe that Candida can play a role - but I don't think that's the case for me now. (I even posted on the Candida link a long time ago - not sure of the forum link, but here is a web page that I linked to: http://www.denvernaturopathic.com/news/celiac.html ) (Please read that if you haven't already!)

So... waiting.

Thank you so very, very much for your support. Sorry I haven't responded yet - I've been slammed with work & school & dating & trying to get my living space organized (I was living with my boyfriend for almost 3 years - left him on Christmas, possibly -in part- because of this active celiac business that I didn't know about).

You guys are wonderful. Thank you thank you thank you!

- Michelle :wub:

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** hugs **

That is just so much to go through. I hope the next round of testing goes well. But more over, I hope they find something useful.

(You're dairy free too, right? Casein can occasionally cause villi damage... Eh... You've gone through all thise before... *hugs*)

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Bean- I'm happy to "see" you, but not hear your news. Does refractory sprue mean forever or will it just take longer than 6 months.

Alos, you wouldn't know about microscopic colitis unless yu had a colonoscopy and they took a sample to examine.

I'm sorry Bean *HUGS*

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Thank you for the hugs! Much needed ;)

The good news is that my doctors office called this morning to tell me that the biopsies were benign. (whew!)

The bad news is that I *still* haven't talked to my doctor (gastro) and when I called back to ask questions, they said he was out of town until next week. (argh!!!)

So, I went to my general health practitioner with my book on Celiac Disease and the article (from celiac.com!) on Refractory Sprue by the Mayo Clinic doctor. She ran a lot of tests (so many blood tests that they made me lie down for twenty minutes after because they thought I was going to pass out!) - including a new tTG test, a bunch of vitamin/mineral tests, thyroid, etc.

Hopefully the tTG will tell me if there is gluten in my diet somewhere that I don't know about. I hope that test will work, anyway. Theoretically, I've been gluten-free since May 11, 2005 - almost two years. So... what the hell??

Anyway - I'll keep you updated! Thank you!

- Michelle :wub:

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Well... I have no idea what is going on now! These are results I got from my doctor today (regarding tests I had Monday):

Complete blood count and iron studies looked good. No sign of iron-deficient anemia.

Liver enzymes are normal.

Thyroid screen (TSH) is normal.

Magnesium is normal.

B12 and folate are normal.

Vit E, A, and D are normal.

Tissue transglutaminase IgA is 3.9 (normal < 7.0, it was 23.4 when we screened and detected celiac disease in May 2005).

So... I'm interpreting this to mean that I'm not getting gluten in my diet.

What could be wrong? :(

I *did* (however) discover that both my birth control pills (ortho tri-cyclen lo) and allergy medication (Zyrtec) have a lactose base, and yesterday was the first day I had a normal bathroom experience. (yay!) So, the dairy hit that I had on Christmas was enough to wipe them out, and then the lactose was enough to prevent healing..? I don't know.

My friend thinks that my body is very passive aggressive - "If you're not going to take care of me exactly as I want you to.. I'm just not going to heal! Ha! :angry: "

I think she understands, since she has Celiac too ;) Maybe all of our bodies are passive aggressive :P

Anyway - I'm open to ideas if anyone has any! Still don't know why my villi are flat and my gastroenterologist is out of town! (Before he answered *any* of my question! Punk!)

- Michelle

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Michelle,

I am sorry you aren't completely healed. What was your Ttg level? Did they recheck that? It sounds like you are absorbing more then you were. How did they detect your villi were still flat? Could they tell by just looking or did they repeat the biopsies? I just had biopsies done, but haven't heard anything yet. From looking they didn't see anything, other then mild gastritis. I don't know what is going on with me. My stomach seems to hate me!!! Hope you get some answers from your GI doctor soon.

Take care,

Monica

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You should try a supplement called IgG200DF by Xymogen. You can get it at most health pharmacies (Though they are somewhat hard to find, you may be able to order them online) ....and so should everyone on this site. It is amazing. It will help heal your stomach faster than it can on it's own. It also helps boost your immune system. I take the capsules everyday. The powder is recommended though, as it is more potent. It's worth a try. Hope that helps! :)

http://www.xymogen.com/2008/formula.asp?code=000019

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