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Confusing Diagnosis, Would Appreciate Your Opinion!


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#1 lasvegas

 
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Posted 03 June 2014 - 02:14 AM

Hi everyone,

 

I don't think I've ever used a public forum before, but after lurking on here for some time, I wanted to ask for your opinions on my diagnosis and ongoing symptoms. I'm going out of my mind and would really appreciate any feedback you can offer - there appear to be some real experts on this forum, and I trust in your experiences much more than my doctors opinions!

 

The quick version is as follows:

  • Diagnosed with Ulcerative Colitis 10 years ago (flares occasionally, and sometimes requires steroid treatment)
     
  • Steatorrhea (pale stools) started 2 years ago. Started once or twice per week, then after a few months, happened every time (haven't had a normal colored BM in 18 months+). Also pain in upper abdomen that has gotten progressively worse.
     
  • Gastro specialist (and every other doc I've seen) did not take me seriously - asked to take medication for anxiety!
     
  • Doc's eventually ran tests - negative for celiac antibody blood test. Pancreatic enzymes fine (stool test). Did Ultrasound (all main organs), CT Scan (all main organs), MRI of Liver, Barium follow through on Small Bowel - all showed nothing other than 'fatty liver'. My liver function blood tests have been up and down throughout this period too.
     
  • Doc FINALLY did Gastroscopy (January 2014). Biopsies of small intestine showed inflammation and villous atrophy
     
  • Told this was possible infection and given antibiotics. No change to symptoms. I was then given the diagnosis of Celiac (January 2014)

 

In January I started what the dietician called a gluten free diet. This included processed foods from supermarkets, soya milk, dairy etc. Everything I ate claimed to be gluten free (dietician told me all supermarket foods marked as gluten-free are completely safe!). No changes to symptoms in 4 months. 

 

During this period my colitis flared and I went onto high dose of prednisolone for 3 weeks, tapering off for another 3 weeks. This got the colitis under control (ie: stopped bleeding) but my pains never went away and BMs are still pale/yellow looking.

 

For the last two weeks I've been eating nothing but bananas, beef, chicken, fish (inc. prawns), vegetables, herbs. No dairy, soy, nothing processed etc. I drink water and have had one or two herbal teas (camomile). I feel terrible!

The pains in my upper abdomen are crippling and I constantly feel nauseous. I have had water BMs (for last 5 days) and see undigested bits of food in toilet.


I should note that I'm very paranoid about cross contamination and I don't even kiss my wife on the lips now :(

 

Someone has recently told me all about the horrifying effects of refractory celiac disease and I'm not petrified that I might have this due to the inflammation being present in my guts for at least 2 years (probably at least 3 years, if not more!). 

 

  1. Should I start feeling better (certainly not worse) on the current diet after 2 weeks?
     
  2. If I show negative for celiac antibodies, what does this mean? Could I still be celiac? Is there anything else I should consider?
     
  3. Would you recommend I continue on the current diet (I'm trying to avoid anything that could cause problems!)
     

If anyone could offer some guidance, it would mean a lot to me. The doctor originally told me I should start feeling better within 2 weeks of going gluten free!

 

PS: I should also mention I have a follow up gastroscopy next week (with a new doctor), plus a colonoscopy (I have one every 2-3 years to check on the colitis)

 

Thanks in advance!


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#2 kareng

 
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Posted 03 June 2014 - 05:13 AM

I am glad you are getting a colonoscopy soon. That might be helpful. Tell this new doc all your issues. Are those foods OK for colitis? Probably, or you wouldn't be eating them.
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#3 lasvegas

 
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Posted 03 June 2014 - 05:18 AM

I am glad you are getting a colonoscopy soon. That might be helpful. Tell this new doc all your issues. Are those foods OK for colitis? Probably, or you wouldn't be eating them.

Hi Kareng, thanks for your reply.

The foods are mostly okay for colitis... I am having too much fibre so that's causing some large colon distress. Not a colitis flare up, but this could be part of the reason for the watery BMs. It's difficult as I would normally eat a high carb, fairly low fibre diet for colitis and I've gone completely the other way in order to try and calm the small bowel problems. Some days I daren't eat (but I still do!)...

I was hoping someone on the board might have had a similar experience and be able to offer some guidance.

Thanks again for your reply.


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#4 ravenwoodglass

 
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Posted 03 June 2014 - 05:24 AM

Sorry you are having such a rough time. You mention that your wife still eats gluten. Do you prepare both gluten and gluten free foods in the same kitchen? If so be sure that you have read the 'Newbie 101' [found at the top in the Coping section] on all that needs to be done to keep you safe in a shared kitchen. Things like a new toaster, not sharing condiments, wooden utensils etc.

I am glad your doctors are trying to get to the bottom of things and hope you improve soon. 


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 lasvegas

 
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Posted 03 June 2014 - 05:28 AM

Sorry you are having such a rough time. You mention that your wife still eats gluten. Do you prepare both gluten and gluten free foods in the same kitchen? If so be sure that you have read the '101' section on all that needs to be done to keep you safe in a shared kitchen. Things like a new toaster, not sharing condiments, wooden utensils etc.

I am glad your doctors are trying to get to the bottom of things and hope you improve soon. 

Hi Ravenwoodglass.

 

Thanks for your reply. My wife and two children both still eat/cook gluten in the kitchen. I wash everything before using it (such as cutlery, even after it's been in the dishwasher) and I have my own pans and utensils.

I don't eat any kind of bread so don't toast anything. The only thing we 'share' is the oven. I occasionally use it to cook chicken etc, and my wife uses it for gluten foods too. I cover the whole tray with tin foil before placing any of my items on there.

 

Is the over an issue? Should I not use the oven anymore, in your opinion? That's the only thing I think we share in the kitchen...


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#6 lasvegas

 
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Posted 03 June 2014 - 05:30 AM

Apologies for another post, but I wondered if anyone reading this also suffered from pale stools before they were diagnosed with celiac? I've read tons of stuff on this forum, and most people seem to have pains, loose stools, brain fog, etc... but I've not come across many other people that have yellow or pale stools. Apologies for the personal questions!

 

The reason I ask if because I'm worried that it's an unusual symptom, and might possibly point to something else?


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#7 kareng

 
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Posted 03 June 2014 - 05:47 AM

http://www.nlm.nih.g...icle/003129.htm

Pale stools can be from gallbladder issues or maybe a medication?
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#8 cyclinglady

 
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Posted 03 June 2014 - 07:51 AM

Have you had a HIDA scan on your gallbladder? My family is cursed with non-functioning gallbladders (fails to empty) making digestion of foods very difficult and painful. Curse? My Dad is one of seven siblings, and six of them have had their gallbladders removed. I am one of 27 cousins and so far, the five eldest have had their gallbladders removed. Traditionally in our family, our gallbladders (stones were never seen or existed on an ultra scan) would work on and off. By the time most of us reached our 40's (one in her teens), our gallbladders would completely stop working making us so ill that we could only eat liquids. Infection would set in and the gallbladder would rot. Surgery was the only option.

Now, younger family members can avoid all the pain (or at least most of it), with a HIDA scan. I think anything less than 20% of functionality is a candidate for surgery.

My rotting, non-functioning gallbladder (0% functionality) was removed almost a decade prior to my celiac disease dx. I was finally admitted by an ER doc who thought I had appendicitis. The surgeon suspected my gallbladder finally -- even though all previous docs knew of the family curse, but in their defense, the HIDA Scan was not available.

One test, the HIDA scan, has saved so many in my family over the past 8 years!

I hope this little rant helps!
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Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




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#9 lasvegas

 
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Posted 03 June 2014 - 08:12 AM

Hi cyclinglady. Thanks for your input. I have mentioned gall bladder to every doctor I've seen. I keep hearing that there is nothing visible on ultrasound/ct scan so everything is fine!!!

I'm going to mention this to the new specialist too. I'm pleased you are you're family are all well now after having the surgeries!

Can I just ask, would ga bladder problems give inflammation in the small intestine? If so, why?

Many thanks
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#10 lasvegas

 
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Posted 03 June 2014 - 08:16 AM

http://www.nlm.nih.g...icle/003129.htm
!
Pale stools can be from gallbladder issues or maybe a medication?


Just noticed this post Kareng. Just wanted to say thanks
Also, in your opinion would a dodgy gall bladder cause the symptoms I've been having, and the inflammation in small bowel?
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#11 cyclinglady

 
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Posted 03 June 2014 - 08:31 AM

Well, you have celiac disease and that creates inflammation! Remember , it takes months or years to rebuild that villi. Plus, think of how your intestines may feel after a good dose of oily, fatty foods that come down the tract and your gallbladder can not squeeze enough bile out to digest the oily, fatty food. (I am all for fat-filled diet since I am also diabetic and this keeps my blood glucose in check and I seem to digest it well despite not having a gallbladder!)

You've celiac disease, colitis, and possible gallbladder issues -- all promote inflammation! The good new is that you may be able to calm down the inflammation with a gluten-free diet and avoid those foods that keep your colitis in check. Maybe even heal your gallbladder? celiac disease might be the root cause of my family's gallbladder curse! (If only I could get them all to test!)
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Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




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#12 IrishHeart

 
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Posted 03 June 2014 - 09:01 AM

Have you had a HIDA scan on your gallbladder? My family is cursed with non-functioning gallbladders (fails to empty) making digestion of foods very difficult and painful. Curse? My Dad is one of seven siblings, and six of them have had their gallbladders removed. I am one of 27 cousins and so far, the five eldest have had their gallbladders removed. Traditionally in our family, our gallbladders (stones were never seen or existed on an ultra scan) would work on and off. By the time most of us reached our 40's (one in her teens), our gallbladders would completely stop working making us so ill that we could only eat liquids. Infection would set in and the gallbladder would rot. Surgery was the only option.

Now, younger family members can avoid all the pain (or at least most of it), with a HIDA scan. I think anything less than 20% of functionality is a candidate for surgery.

My rotting, non-functioning gallbladder (0% functionality) was removed almost a decade prior to my celiac disease dx. I was finally admitted by an ER doc who thought I had appendicitis. The surgeon suspected my gallbladder finally -- even though all previous docs knew of the family curse, but in their defense, the HIDA Scan was not available.

One test, the HIDA scan, has saved so many in my family over the past 8 years!

I hope this little rant helps!

 

 

THIS is my family exactly. My mom and her 6 siblings--all Gall bladder- less by their 40's.

I doubt any one of the 28 cousins still have their GB. Every time I turned around, someone else's was gone. (i think my brother may be the only one with one left)

I lost mine 28 years ago. It was just the beginning of so many things....

I often wonder if my GB could have been saved (and the other 5 organs I lost) had i known about the celiac.

ah, we'll never know. 

 

lasvegas--

Hang in there. It takes time to heal, but you'll get there. And if it makes you feel better, I used to have pale stools too. (it's okay, we talk about poop on here)  ^_^


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#13 cyclinglady

 
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Posted 03 June 2014 - 10:25 AM

THIS is my family exactly. My mom and her 6 siblings--all Gall bladder- less by their 40's.
I doubt any one of the 28 cousins still have their GB. Every time I turned around, someone else's was gone. (i think my brother may be the only one with one left)
I lost mine 28 years ago. It was just the beginning of so many things....
I often wonder if my GB could have been saved (and the other 5 organs I lost) had i known about the celiac.
ah, we'll never know. 
 
lasvegas--
Hang in there. It takes time to heal, but you'll get there. And if it makes you feel better, I used to have pale stools too. (it's okay, we talk about poop on here)  ^_^


How can a gene be so strong that it is not watered down by introduction of new genes from members who marry into the family? I have a very strong feeling that most of my extended family has issues with gluten and I think there is a link between celiac disease and gallbladder disease. Only one Aunt gave up gluten and found relief per the advice of her chiropractor. One cousin had an endoscopy done prior to my dx, but they did not check for celiac disease (and she is in the medical field and has access to the best, you would think). Since her Mom did great going gluten free, she opted to do the diet. She only gets glutened accidentally and boy, does she feel it then! She refuses to do a challenge and I can not blame her. She is pretty sure she has celiac disease.

Most in my family would rather suffer than get tested for celiac disease. If they can take a pill, they will! Major surgery, no problem, but give up gluten? No way!
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Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




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#14 beth01

 
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Posted 03 June 2014 - 11:12 AM

I also had gallbladder issues for about a year before they figured it out.  I had a lot of problems with my stools, a burning sensation across my whole chest under my ribs, no matter what I ate I felt awful.  I also didn't have stones, or any other classic signs, except my gallbladder was inflamed.  It was such a small amount they weren't going to do anything with it.  I was finally hospitalized and my doctor talked to a different surgeon that agreed to take my gallbladder out.  It was non- functional and I woke up from the surgery feeling great.  Now if they only would have take out my crappy appendix( literally crappy appendix, it was impacted with stool).  I walked around with chronic appendicitis since Jan 30 when the inflammation was first observed until I had my appendix out two weeks ago.  I also had to fight for them to take that out.  The off and on fevers,  daily vomiting, and pain strong enough to need medication wasn't a big enough tip off to them that something was wrong. My second trip to the ER in a matter of six hours and I refused to leave, told them I would go to the car and come back and I would repeat the process until they admitted me and figured out what the hell was wrong with me.  I thought they were going to call security.  Had my appendix out two days later after a colonscopy that morning and a triple surgery in the afternoon: they found a hernia in this whole fiasco that was repaired, my appendix out, and exploratory lap of my lower stomach. In the end it was worth it. I woke up from the surgery feeling great, and starving! I was taking three anti-nausea pills a day for months prior and since the surgery I have only taken three, the doctors were trying to tell me I was getting glutened when I knew I wasn't, knew it was different.  I would say it worked.

If you keep going to the doctor with the same symptoms time and time again and they don't work as hard as they can to figure out why and just dismiss it as Celiac, I would get a new doctor.  Rinse and repeat if necessary.


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Diagnosed April 7th 2014

#15 IrishHeart

 
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Posted 04 June 2014 - 03:34 AM

How can a gene be so strong that it is not watered down by introduction of new genes from members who marry into the family? I have a very strong feeling that most of my extended family has issues with gluten and I think there is a link between celiac disease and gallbladder disease. Only one Aunt gave up gluten and found relief per the advice of her chiropractor. One cousin had an endoscopy done prior to my dx, but they did not check for celiac disease (and she is in the medical field and has access to the best, you would think). Since her Mom did great going gluten free, she opted to do the diet. She only gets glutened accidentally and boy, does she feel it then! She refuses to do a challenge and I can not blame her. She is pretty sure she has celiac disease.

Most in my family would rather suffer than get tested for celiac disease. If they can take a pill, they will! Major surgery, no problem, but give up gluten? No way!

 

There is definitely a link between impaired gall bladder motility and celiac disease. It's listed as a related symptom/condition on the literature on the Univ. of Chicago celiac research center. 

 

I am glad your aunt and cousin are getting relief, but i wish chiropractors would stop  'diagnosing people".  If they want to help their patients, they should suggest people be tested first. If the testing is negative and they want to go G F anyway, fine, but if something else is a problem and they have not seen a doctor to properly rule things out, they may be missing something important.

 

( and I don't blame them for not doing a gluten challenge either!) 


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





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