Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Just Got Back From The Mayo Clinic In Minnesota - Is This Familiar To Anyone Else?


  • Please log in to reply

24 replies to this topic

#16 spirit_walk

 
spirit_walk

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 99 posts
 

Posted 02 July 2013 - 11:48 AM

My wife said the doctor told her my stomach was more red that usual and said it could be gastritis. Also said I had a polyp in my esophagus that he removed. He took biopsies of the polyp and stomach and I believe they are testing for celiac and not sure what else.

 

My symptoms are just like what I would read for celiac, except instead of major stomach pain, the food I eat causes almost immediate joint pain in hands, wrists, hips, and jaw. I've been told by 4 rheumatologists that I don't have RA, Lupus or other rheumatic conditions, so I think all this stems from my gut.

 

With a very poor diet including a lot of sugar, sodas, and fast food, could it do enough damage to the lining of the stomach to cause these kind of symptoms? The doc said I may not be celiac and may just have a gluten intolerance. Could that cause this many issues? I've had ulcers in my mouth my entire life, and I've always had difficulty gaining weight. As a child, I had diarrhea a lot, but it stopped when I went off to college at around 17 or 18.

 

With so many tests coming back normal in the past (with bloodworm, joint/bone scans, x-rays, etc), I feel like I might finally be onto something with the stomach. I waited a long time to have the endoscopy done b/c I went so long without any stomach pain.


  • 0

Celiac.com Sponsor:

#17 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,099 posts
 

Posted 02 July 2013 - 12:26 PM

My wife said the doctor told her my stomach was more red that usual and said it could be gastritis. Also said I had a polyp in my esophagus that he removed. He took biopsies of the polyp and stomach and I believe they are testing for celiac and not sure what else.

 

My symptoms are just like what I would read for celiac, except instead of major stomach pain, the food I eat causes almost immediate joint pain in hands, wrists, hips, and jaw. I've been told by 4 rheumatologists that I don't have RA, Lupus or other rheumatic conditions, so I think all this stems from my gut.

 

With a very poor diet including a lot of sugar, sodas, and fast food, could it do enough damage to the lining of the stomach to cause these kind of symptoms? The doc said I may not be celiac and may just have a gluten intolerance. Could that cause this many issues? I've had ulcers in my mouth my entire life, and I've always had difficulty gaining weight. As a child, I had diarrhea a lot, but it stopped when I went off to college at around 17 or 18.

 

With so many tests coming back normal in the past (with bloodworm, joint/bone scans, x-rays, etc), I feel like I might finally be onto something with the stomach. I waited a long time to have the endoscopy done b/c I went so long without any stomach pain.

 

Many of the symptoms you are talking of can be related to Celiac Disease.  That you have inflammation in the digestive system certainly adds to the possibility.  If your doctor has run all necessary blood tests -- it is time to remove all sources of gluten for at least three months -- six is better to monitor symptoms as there is no test for Non Celiac Gluten Sensitivity NCGS, which can present with many of the same symptoms as Celiac Disease - including the autoimmune type symptoms.

 

Here is a list to double check:

 

Total Serum IgA

tTG - both IgA and IgG

EMA - IgA

DGP - both IgA and IgG

 

Nutrients should be checked as well as malabsorption of nutrients can cause/contribute to many of the symptoms you mention:

 

CBC - Complete Blood Count

CMP - Complete Metabolic Panel

 B1, B2, B6, B12, D, K

Iron, Ferritin, Copper and Zinc

 

Hang in there and if you are done with testing -- do try to remove ALL gluten as it is the only test for NCGS :)


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#18 spirit_walk

 
spirit_walk

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 99 posts
 

Posted 02 July 2013 - 12:43 PM

Many of the symptoms you are talking of can be related to Celiac Disease.  That you have inflammation in the digestive system certainly adds to the possibility.  If your doctor has run all necessary blood tests -- it is time to remove all sources of gluten for at least three months -- six is better to monitor symptoms as there is no test for Non Celiac Gluten Sensitivity NCGS, which can present with many of the same symptoms as Celiac Disease - including the autoimmune type symptoms.

 

Here is a list to double check:

 

Total Serum IgA

tTG - both IgA and IgG

EMA - IgA

DGP - both IgA and IgG

 

Nutrients should be checked as well as malabsorption of nutrients can cause/contribute to many of the symptoms you mention:

 

CBC - Complete Blood Count

CMP - Complete Metabolic Panel

 B1, B2, B6, B12, D, K

Iron, Ferritin, Copper and Zinc

 

Hang in there and if you are done with testing -- do try to remove ALL gluten as it is the only test for NCGS :)

 

Thanks Lisa,

 

I have been gluten free for the last 9 months. There may have been a handful of times that I accidentally ate something with gluten in it, and I have eaten stuff like Nut-Thins that say they are wheat and gluten free but have a disclaimer (produced in a facility that also makes products containing wheat). I've had many blood tests done including CBC, but I'm not sure about full gluten panels. The doctors have told me that my vitamin and mineral levels are in good shape. My wife and daughter also eat gluten, and I share the same kitchen (obviously). I never imagined that I could be hyper-sensitive to gluten if I've been eating it for my entire life. Maybe that is a possibility.

 

Anyway, I don't think I could go on a gluten diet for several weeks, b/c eating it will drive the joint pain up. But even after 9 months, I still have considerable pain and discomfort in the joints along with the popping.


  • 0

#19 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,099 posts
 

Posted 02 July 2013 - 12:48 PM

Thanks Lisa,

 

I have been gluten free for the last 9 months. There may have been a handful of times that I accidentally ate something with gluten in it, and I have eaten stuff like Nut-Thins that say they are wheat and gluten free but have a disclaimer (produced in a facility that also makes products containing wheat). I've had many blood tests done including CBC, but I'm not sure about full gluten panels. The doctors have told me that my vitamin and mineral levels are in good shape. My wife and daughter also eat gluten, and I share the same kitchen (obviously). I never imagined that I could be hyper-sensitive to gluten if I've been eating it for my entire life. Maybe that is a possibility.

 

Anyway, I don't think I could go on a gluten diet for several weeks, b/c eating it will drive the joint pain up. But even after 9 months, I still have considerable pain and discomfort in the joints along with the popping.

 

Ahhh,,my apologies...didn't realize you were gluten-free for nine months....the celiac antibody blood tests are of no use other than follow up at this point.

 

Have you tried keeping a food/symptom log?  Some of us that went undx'd for a long while have to remove some other foods to help the gut heal.  Nightshades -- Potato, Tomato, All Peppers and Eggplant is a common one for folks with arthritis type issues.  Did you say you tested negative for inflammation?  This does not rule out inflammation in the body caused by food -- well at least this is my experience.  Now that I have eliminated everything that was causing me to flare - I no longer have muscle and joint pain all day long -- only when I eat something that is not on my safe list. 


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#20 spirit_walk

 
spirit_walk

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 99 posts
 

Posted 02 July 2013 - 01:17 PM

Did you say you tested negative for inflammation?  This does not rule out inflammation in the body caused by food -- well at least this is my experience.  Now that I have eliminated everything that was causing me to flare - I no longer have muscle and joint pain all day long -- only when I eat something that is not on my safe list. 

 

Yes, I have had many inflammation blood tests done through rheumatologists. All have come back negative. Couldn't understand how it never showed up in my blood when I was feeling it all the time. So, if you're correct about it not ruling out inflammation caused by food, that would make a lot of sense for me. I saw a nutritionist that did a food sensitivities test on me (IGG & IGE). Results were that I was intolerant to over 30 foods. I've tried to cut most all of them out, but I still eat Udi Bread which has egg. I do notice more pain when I try those foods. My problem with the diet is that I keep losing weight due to lack of calories. I used to eat fast food, chocolate, sodas, etc all day and weighed about 155. Now I'm down to 130 eating 3 full meals a day with snacks in between. I just can't get enough calories with no gluten, dairy, egg, or red meats. It's a catch 22 for me, and all the doctors I've seen keep telling me to add those foods back in to gain some weight back. The traditional doctors I've seen don't put much stock in the food sensitivities blood test, but I KNOW those foods are causing the pain. :(


  • 0

#21 spirit_walk

 
spirit_walk

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 99 posts
 

Posted 02 July 2013 - 01:33 PM

I'll also add that these food sensitivities came on rapidly. One day I was eating any and everything in front of me. Within a few weeks the joint pain started and became almost unbearable. I saw the nutritionists about 3-4 months later and she did the bloodwork. Whatever happened in the gut, it came on like wildfire and I suddenly couldn't eat so many foods that I'd eaten on a regular basis. I don't know if this might have been a gluten intolerance that slowly manifested into those symptoms (I was having sensation in my hands on and off for about 3 years prior). When I say sensations, I mean numbness and mild pain in the hands. I had a banding procedure done to remove internal hemorrhoids and within the next two weeks the joint pain started getting really bad. Maybe that was the trauma that broke this wide open.


  • 0

#22 spirit_walk

 
spirit_walk

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 99 posts
 

Posted 02 July 2013 - 01:42 PM

We like to blame everything on gluten, but maybe some of your issues have nothing to do with gluten? Something we all need to remember.

Ways to add calories - oil. If you eat a hamburger - get the full fat versions. Add a little olive oil to a cooked veg or chicken. Eat high Calories foods like avocado and coconut. Bacon? I know its not heart healthy, but in the short term, its OK. Potatoes in various styles. A favorite at our house is the red skin ones, don't peel, cut I to 1/4 inch cubes toss with olive oil, wrap up on foil and grill or bake at about 400F for 20 minutes. Check the time as the size matters. :)

 

 

We like to blame everything on gluten, but maybe some of your issues have nothing to do with gluten? Something we all need to remember.

Ways to add calories - oil. If you eat a hamburger - get the full fat versions. Add a little olive oil to a cooked veg or chicken. Eat high Calories foods like avocado and coconut. Bacon? I know its not heart healthy, but in the short term, its OK. Potatoes in various styles. A favorite at our house is the red skin ones, don't peel, cut I to 1/4 inch cubes toss with olive oil, wrap up on foil and grill or bake at about 400F for 20 minutes. Check the time as the size matters. :)

 

Thanks for the advice Karen. I haven't had a burger in almost a year, b/c I tried to cut out red meat. Same with white potatoes (nightshades). I have done sweet potatoes and chicken breasts in the oven with olive oil though. I love avocado. Haven't had bacon in quite a while either, but I miss it. I just bought my wife and I New York Strips. We'll see how my stomach handles it. It will be the first red meat I've eaten in a long time.


  • 0

#23 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,099 posts
 

Posted 02 July 2013 - 01:59 PM

For me....I have had many improved periods as I removed certain foods post celiac diagnosis. 

 

What it boils down to --- for me --- is my system was treating many foods as an invader.  I'd remove or replace foods and then those new foods I was using became problems -- whether it was that I was eating more of them or just recognizing they were a problem because of the symptom log -- i'll never know -- great example -- at about 18 months gluten-free I was having yet another autoimmune flare from hell -- which led to my complete lectin elimination diet -- turns out I was intolerant of nearly high lectin food -- my go to lunch at the time was Quinoa with Red Bell Pepper and Tiny Peas for color -- along with a couple handfuls of peanuts to munch on at my desk -- I can't eat any of those items -- still haven't gotten them back nearly two years later -- I do remain hopeful that I will, but have learned to eat many yummy things without them.

 

I think you are on the right track.  With all that you have removed -- just add good fat where ever possible.  Foods high in histamine or that induce histamine have made the last best improvement to my health....I've been healthier with less pain (relative) since removing them last November -- not suggesting that you need to remove histamines per se....just wanted to preface what I am about to say. Add as much good fat as you can....coconut oil, nuts, avocado (if you tolerate).

 

Did you say you don't eat red meat -- or all meat?  getting enough fat and protein is tough on a limited diet.  If you eat poultry...don't worry about only eating the lean breast meat...eat the legs, thighs and skin too!  Fish?  Salmon in particular has fat and if you aren't gaining or at least maintaining weight - eat larger portions? 

 

I make a "chocolate mousse" in the blender with almonds, cocoa, coconut oil, vanilla and agave -- pretty darn tasty and definitely not low calorie!

 

Hope this helps...and isn't too confused...will try to check back in when I get home.

 

-Lisa


  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#24 spirit_walk

 
spirit_walk

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 99 posts
 

Posted 02 July 2013 - 02:16 PM

For me....I have had many improved periods as I removed certain foods post celiac diagnosis. 

 

What it boils down to --- for me --- is my system was treating many foods as an invader.  I'd remove or replace foods and then those new foods I was using became problems -- whether it was that I was eating more of them or just recognizing they were a problem because of the symptom log -- i'll never know -- great example -- at about 18 months gluten-free I was having yet another autoimmune flare from hell -- which led to my complete lectin elimination diet -- turns out I was intolerant of nearly high lectin food -- my go to lunch at the time was Quinoa with Red Bell Pepper and Tiny Peas for color -- along with a couple handfuls of peanuts to munch on at my desk -- I can't eat any of those items -- still haven't gotten them back nearly two years later -- I do remain hopeful that I will, but have learned to eat many yummy things without them.

 

I think you are on the right track.  With all that you have removed -- just add good fat where ever possible.  Foods high in histamine or that induce histamine have made the last best improvement to my health....I've been healthier with less pain (relative) since removing them last November -- not suggesting that you need to remove histamines per se....just wanted to preface what I am about to say. Add as much good fat as you can....coconut oil, nuts, avocado (if you tolerate).

 

Did you say you don't eat red meat -- or all meat?  getting enough fat and protein is tough on a limited diet.  If you eat poultry...don't worry about only eating the lean breast meat...eat the legs, thighs and skin too!  Fish?  Salmon in particular has fat and if you aren't gaining or at least maintaining weight - eat larger portions? 

 

I make a "chocolate mousse" in the blender with almonds, cocoa, coconut oil, vanilla and agave -- pretty darn tasty and definitely not low calorie!

 

Hope this helps...and isn't too confused...will try to check back in when I get home.

 

-Lisa

Yes, big help Lisa! One of my fears is that I'm going to become intolerant to the little foods I have left. I'm already so restricted that it's difficult to eat a healthy amount. I was told to do the rotation diet and not eat foods more than once over a four day period. That's impossible for me. I try to eat them once or twice and then not eat them again for the next 2-3 days. But, even that is difficult. I'm already wondering if I've lost some of the foods that were originally safe after the first blood test. But, if you are right (and I tend to believe you are b/c I am experiencing similar issues), then my stomach isn't going to heal by removing the gluten if I'm still eating some of the foods that I've tested positive for.


  • 0

#25 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,099 posts
 

Posted 02 July 2013 - 03:31 PM

Yes, big help Lisa! One of my fears is that I'm going to become intolerant to the little foods I have left. I'm already so restricted that it's difficult to eat a healthy amount. I was told to do the rotation diet and not eat foods more than once over a four day period. That's impossible for me. I try to eat them once or twice and then not eat them again for the next 2-3 days. But, even that is difficult. I'm already wondering if I've lost some of the foods that were originally safe after the first blood test. But, if you are right (and I tend to believe you are b/c I am experiencing similar issues), then my stomach isn't going to heal by removing the gluten if I'm still eating some of the foods that I've tested positive for.

 

Again -- for me -- I don't worry about the rotation thing -- now that I am down to meat, fish, selected vegies and fruits -- oh I did get almond back -- but my total safe food list is very short and I eat as much of those safe foods as i want....I am not dropping weight but I look much lighter -- again that pesky inflammation deal.

 

I should say that many folks have found they need to rotate their foods -- but it simply was not possible when I was at most limited diet so I did not and haven't needed to thus far.


  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: