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Bad Endoscopy Results :(


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21 replies to this topic

#16 bean

 
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Posted 28 January 2007 - 07:57 AM

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.denvernat...ews/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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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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#17 tarnalberry

 
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Posted 28 January 2007 - 11:35 AM

** 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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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

#18 Mtndog

 
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Posted 28 January 2007 - 12:10 PM

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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***************************
Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.
Albert Careb


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#19 bean

 
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Posted 29 January 2007 - 02:28 PM

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

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 :)

#20 bean

 
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Posted 31 January 2007 - 09:18 PM

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 :)

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 :)

#21 key

 
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Posted 01 February 2007 - 07:03 AM

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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#22 Crayons574

 
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Posted 04 June 2009 - 08:40 PM

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.c...asp?code=000019
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1 Corinthians 6: 19-20, "Do you not know that your body is a temple of the Holy Spirit, who is in you, whom you have received from God? You are not your own; you were bought at a price. Therefore honor God with your body."


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