Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Bad Endoscopy Results :(


Emme999

Recommended Posts

Emme999 Enthusiast

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Judyin Philly Enthusiast

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

chrissy Collaborator

maybe some other food intolerances?

2kids4me Contributor

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.

Open Original Shared Link

Open Original Shared Link

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

Ursa Major Collaborator

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.

plantime Contributor

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.

Emme999 Enthusiast

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 :(


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Mango04 Enthusiast

Have you read this thread?

Open Original Shared Link

Ursa Major Collaborator

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.

Carriefaith Enthusiast

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?

tarnalberry Community Regular

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?

rez Apprentice

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.

tarnalberry Community Regular

Links to articles regarding cow's milk-sensitive enteropathy:

Open Original Shared Link

Open Original Shared Link

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.

Rachel--24 Collaborator

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.

bluejeangirl Contributor

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

Open Original Shared Link

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

Emme999 Enthusiast

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: Open Original Shared Link ) (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:

tarnalberry Community Regular

** 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*)

Mtndog Collaborator

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*

Emme999 Enthusiast

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:

Emme999 Enthusiast

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

key Contributor

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

  • 2 years later...
Crayons574 Contributor

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! :)

Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,189
    • Most Online (within 30 mins)
      7,748

    Eric bell
    Newest Member
    Eric bell
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...