Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
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

#1 spirit_walk

 
spirit_walk

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 99 posts
 

Posted 28 June 2013 - 06:14 PM

Hello,

 

I finally made the trip I've been looking forward to for quite some time. I'd been to 7 different doctors, and none could tell me what is wrong with me or what is causing my symptoms. I thought the Mayo Clinic might finally provide the answer, but once again, no answers.

 

A brief history:

 

Two years ago, I ate whatever I wanted (very poor diet consisting of fast food, sodas, and a lot of sugar) and never experience an allergy to anything. I had a hemorrhoid issue that was causing stress to life, but that was my only real health issue. In March of 2012, I had a banding procedure to remove internal hemorrhoids, and suddenly my health changed. Within a week, my hands began to hurt to the point that washing dishes, turning a door knob, or picking up my 18 month old daughter was almost unbearable. I initially thought I had RA, but after seeing four rheumatologists (including one at Mayo), I'm pretty much convinced I don't have RA or Lupus. The hand pain eventually migrated to my wrists, knees, hips, and finally jaw. Over time, I began getting popping in my wrists and shoulders. I know have considerable popping in those two areas as well as my jaw. In September of 2012, I saw a nutritionist who did IGG/IGE bloodwork for food sensitivities. She told me I was intolerant to 30 foods tested: Egg, carrot, coffee, lemon, green peas, rye, tuna, yeast, asparagus, cashew, crab, lobster, peanuts, safflower, walnut, yogurt, barley, cauliflower, gluten, malt, black pepper, sesame, watermelon, cantaloupe, cheese, grape, milk (cows), pineapple, tomato, wheat.

 

Because I was willing to do anything to feel better, I tried to cut out all foods on the list. I noticed that the change in diet began to make the joint pain better (although it didn't go away). However, this diet has caused me to go from 156 pounds to about 130, give or take a few pounds depending on the day. My metabolism is just too high to maintain weight with this diet. From March of 2012 to February 2013, I went from my GP an orthopedic surgeon, to a nerve specialist, to 3 different rheumatologists. I also saw an allergist who told me I didn't have food allergies. After the third rheumatologist told me to come back and see him when I was in more pain, I gave up and started planning to make the trip to Rochester for the Mayo Clinic. I've never had any SWELLING in my joints even on my worst days, but they do get warm.

 

So here I am today. I've had numerous blood tests done and just finished a battery of them at the Mayo Clinic. I also had a joint scan done and urine/stool tests. I've previously had a bone scan as well. All results are normal. I've spent thousands on tests, MRI's, X-Rays, bone scans, joint scans, and consultations only to be told I'm a healthy person according to all the doctors. I was also told at Mayo that the IGG/IGE tests done by the nutritionist were a scam and I need to go back to eating more foods. He told me there was no such thing as "leaky gut," that it was a hoax.

 

The problem is that food is tied to the joint pain and the POPPING! If I eat things high in sugar or off my list, my joint pain gets worse almost immediately. I can tell a difference in the popping within 10 minutes of swallowing some foods.

 

I'm now having stomach/gut pain (started about 2 months ago). It comes and goes, and the real problems are the joint pain and the popping. I can't go 10 minutes without my shoulders popping, and it's frightening. My wrists begin to feel tight like they're going to lock up, and then they pop when I move them.

 

While I'm not certain I'm intolerant to the 30 foods listed, I am certain that I am to ones I've tried. And food is tied directly to my joint pain and popping.

 

I am having my first colonoscopy and endoscopy done this week (mainly to rule out anything crazy like a tumor or something). I haven't eaten gluten for 9 months though, so they won't be able to do a biopsy for Celiac. Mayo did a gene test for Celiac and I do not carry the genes, but they told me that doesn't completely rule it out (confused).

 

Has anyone had popping in their joints or joint pain without real stomach issues? Even if I don't have Celiac's disease, I know I've become intolerant to many of these foods. I've never had any bleeding even with the hemorrhoid issues.

 

I'm very frustrated. I feel like I'm on an island with no help in sight. But, I'm still looking for answers. I thought maybe someone on this board could provide some insight or clues to my issues.

 

 


  • 0

Celiac.com Sponsor:

#2 1desperateladysaved

 
1desperateladysaved

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,220 posts
 

Posted 28 June 2013 - 07:05 PM

Between the Bridges in Mankato has been helping me.  I think the doc there had practiced at the Mayo clinic, but has moved on.  I have heard of someone else who went to the Mayo clinic and they were really helpful.  I hope you will get the help you need wherever it is.

 

D


  • 0

#3 spirit_walk

 
spirit_walk

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 99 posts
 

Posted 28 June 2013 - 07:16 PM

Between the Bridges in Mankato has been helping me.  I think the doc there had practiced at the Mayo clinic, but has moved on.  I have heard of someone else who went to the Mayo clinic and they were really helpful.  I hope you will get the help you need wherever it is.

 

D

 

 

Yeah, I guess I should add that I'm back home in Texas now. Couldn't afford to stay at Mayo for weeks, so I'm back home and going to get the endoscopy and colonoscopy here in Austin. It also might help to add that I am a 39 year-old male. I didn't mention that in the original post.


  • 0

#4 w8in4dave

 
w8in4dave

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,268 posts
 

Posted 28 June 2013 - 08:29 PM

My goodness!! It'd the Mayo Clinic!! You'd think they'd of done more to help you find out what id wrong with you!! I don't have any of your symptoms but I feel for you!! I do also hope you find out what is causing all your pain! 


  • 0

Recovering Gluten Eater 

DX'd June 17th 2013


#5 nvsmom

 
nvsmom

    Moderator

  • Moderators
  • PipPipPipPipPipPip
  • 3,601 posts
 

Posted 28 June 2013 - 09:34 PM

I too have had a lot of joint pain without swelling. I also suspected lupus although they rheumy I saw in the spring says my problems are still celiac related. The problem with fatigue and arthralgias are that they are common to many health issues (as you know). I also have thyroiditis and that could also be at the root of the fatigue and/or pain.

celiac disease or non-celiac gluten sensitivity (NCGS) can cause pain and fatigue....do you know what celiac tests the clinic ran? If you were gluten-free, that will affect the results though. Is it possible for you to eat gluten before your endoscopy, or to push it back another week? Often just two weeks of gluten is enough for accurate biopsies.

Good luck.
  • 0
Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#6 spirit_walk

 
spirit_walk

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 99 posts
 

Posted 29 June 2013 - 05:41 AM

nvs,

 

It's too late for me to cancel my appointment (scheduled for Monday morning). I'm not sure what the genetic test was called. It was a blood test. It's labeled Gluten Sensitivity AG, then says "permissive genes absent. Celiac Disease extremely unlikely." 

 

Another page reads, "Celiac gene pairs present  --- No (method: Low to Medium or High Resolution Molecular Testing)

 

 

Are you sure that the genetic tests can be false negatives if I haven't been eating gluten?

 

Also, what are your thoughts on the gastroenterologist saying that leaky gut is a hoax and that the IGG/IGE tests are inconclusive?


  • 0

#7 nvsmom

 
nvsmom

    Moderator

  • Moderators
  • PipPipPipPipPipPip
  • 3,601 posts
 

Posted 29 June 2013 - 09:02 AM

I don't know a lot about genetic testing. I believe most celiacs have the gene pairs but not all do. They are just the gene pair that is most common. I know I have seen at least one board member that has celiac even though they know they do not have the usual genes for it.  It does mean that you are less likely to have celiac disease though.

 

Going gluten-free does not affect genetic tests but it does affect celiac tests. For some people who have gone gluten-free, the blood tests go to the normal range within weeks. For others, it can take years to go down like my own tests; after one year gluten-free, one test is normal and the other is still slightly elevated but I think I am taking longer than normal to get back to normal.  If a celiac is totally gluten-free, eventually their blood tests will be normal - it will look the same as someone who does not have celiac.

 

If you have been gluten-free for 9 months, there is a good chance that any celiac testing done on you (possibly the Gluten Sensitivity AG test they ran) would be negative. There is also a strong possibility that any intestinal villi damage that was done by your reaction to gluten would have healed after 9 months gluten-free, so you endoscopic biopsy may end up negative.

 

The Gluten sensitivity AG test is probably the anti-gliadin antibody test (could be IgA or IgG based). This is an older test that detects a sensitivity to gliadin. A positive test is thought to indicate gluten sensitivity in celiacs or in NCGS. The remaining celiac panel is the tissue transglutiminase, endomysial antibodies, and deaminated gliadin peptides; these test for intestinal villi damage and are not present in those with NCGS. They are written as:

  • tTG IgA and tTG IgG
  • EMA IgA
  • DGP IgA and DGP IgG

IgA is Immunoglobulin A and is a part of the immune system based in the mucosal linings of the body (like the small intestine which is why they use tests based in IgA). About 5% of celiacs are deficient in Iga so any tests they have that are Iga based will yield a (false) negative result. I'm guessing (and this is just a guess) that they ran the total serum IgA test on you and it fell in normal range, which they would call inconclusive.

 

This report has lots of info on celiac disease. Pages 11-12 deal with testing and how sensistive the tests are (how good they are at detecting celiac disease). http://www.worldgast..._long_FINAL.pdf

 

The IgE is the part part of your immune system that deals with allergies. A high level shows allergies whereas a normal or low level means you have no "true" allergies. I'm guessing that inconclusive means you have no true allergies.

 

I don't think they did much celiac testing on you, possibly because of your negative gene test which makes it unlikely that you have celiac disease, but still possible. If you want celiac testing done, you will need to do a gluten challenge; you'll need to eat the equivalent of about 2 slices of bread a day for 2-3 months. Some people do just 4 weeks but it's harder to be certain you are getting accurate results with shorter times.  Endoscopies only require a minimum two week gluten challenge to be considered accurate, which is why I asked if you could push your test back a bit.

 

If Mayo doesn't give you answers, you could continue gluten-free and dairy free (those often go together) and continue figuring out your food sensitivities.  Thyroiditis can cause constipation and hemorrhoids, as well as pain too.

 

I don't get much popping like you described except in my groin/hip area when my leg will lock, and then pop out rather painfully. My shoulder will pop too, but it's not painful nor frequent.

 

I hope you get more answers.  Good luck with your procedure on Monday!


  • 0
Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#8 spirit_walk

 
spirit_walk

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 99 posts
 

Posted 29 June 2013 - 03:03 PM

Thanks for all the advice and information nvsmom. I've had my thyroid and hormones checked, but I still wonder about my thyroid. My hands get very cold when they aren't feeling feverish and hurting. I'll ask my gastro doctor about my genetic testing for Celiac.

 

Do you have any thoughts on "leaky gut?" I've read about it on the web and was told I likely had this from the nutritionist last year. But, the medical doctors I've seen don't seem to agree.

 

I've followed Jennifer Esposito and her journey with Celiac's disease. I feel like my problems mirror hers except instead of stomach issues, I have joint pain. Something has created all these food intolerances even if I'm not a true Celiac.


  • 0

#9 nvsmom

 
nvsmom

    Moderator

  • Moderators
  • PipPipPipPipPipPip
  • 3,601 posts
 

Posted 29 June 2013 - 04:51 PM

I don't know a lot about leaky gut. The theory behind it makes sense to me - I would guess it will be more medically accepted in a few more years. I don't see how trying to heal a leaky gut could hurt you so you might as well do what you can for yourself.
  • 0
Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#10 w8in4dave

 
w8in4dave

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,268 posts
 

Posted 29 June 2013 - 09:20 PM

I just read something about leaky gut yesterday let me get that and post it for you!! Seems some Drs. think it is nothing.... 1st sentence 

 

http://www.drweil.co...-leaky-gut.html

 

http://www.webmd.com...ky-gut-syndrome

Here is part of what the last one says : 

 

"Leaky gut syndrome" isn't a diagnosis taught in medical school. Instead, "leaky gut really means you’ve got a diagnosis that still needs to be made,” Kirby says. “You hope that your doctor is a good-enough Sherlock Holmes, but sometimes it is very hard to make a diagnosis.”


  • 0

Recovering Gluten Eater 

DX'd June 17th 2013


#11 spirit_walk

 
spirit_walk

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 99 posts
 

Posted 29 June 2013 - 10:03 PM

I just read something about leaky gut yesterday let me get that and post it for you!! Seems some Drs. think it is nothing.... 1st sentence 

 

http://www.drweil.co...-leaky-gut.html

 

http://www.webmd.com...ky-gut-syndrome

Here is part of what the last one says : 

 

"Leaky gut syndrome" isn't a diagnosis taught in medical school. Instead, "leaky gut really means you’ve got a diagnosis that still needs to be made,” Kirby says. “You hope that your doctor is a good-enough Sherlock Holmes, but sometimes it is very hard to make a diagnosis.”

 

Thanks. I think I actually looked that site up and read it a couple of weeks ago. Dr. Alessio Fasano, one of the leading Celiac Doctor's speaks about Leaky Gut here:

 

http://www.glutenfre...en-sensitivity/

 

This is part of the frustration for me. Mayo said there's no such thing. Yet there are other doctor's who say it's a gray area or that it is a real phenomenon. 


  • 0

#12 w8in4dave

 
w8in4dave

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,268 posts
 

Posted 30 June 2013 - 06:05 PM

Absolutely!! It is such a thing!! I believe anyway, altho I don't know what exactly it is. But I believe it is something people have and they just don't want to admit it!!! 


  • 0

Recovering Gluten Eater 

DX'd June 17th 2013


#13 GottaSki

 
GottaSki

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

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,100 posts
 

Posted 30 June 2013 - 08:54 PM

Welcome!

 

Just saw your thread...and am too tired to post adequately....for now know...you. are. not. alone...I'll post more tomorrow or one of these nice folks will remind me ;)

 

Hang in there! 


  • 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 :)


#14 spirit_walk

 
spirit_walk

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 99 posts
 

Posted 01 July 2013 - 05:19 PM

Welcome!

 

Just saw your thread...and am too tired to post adequately....for now know...you. are. not. alone...I'll post more tomorrow or one of these nice folks will remind me ;)

 

Hang in there! 

 

I look forward to your post and any others who could shed some light. I am highly concerned about the persistent popping in the shoulders and wrists. Also if anyone has any ideas on how to add calories for someone who can't have gluten, dairy or eggs, that would be helpful.

 

Had an upper endoscopy and colonoscopy today. I'll get results within the next week, but it was an easy procedure. No soreness! Was up the entire night with the prep, and I'm happy to have it behind me.


  • 0

#15 kareng

 
kareng

    HO! HO! HO!

  • Moderators
  • PipPipPipPipPipPip
  • 14,317 posts
 

Posted 01 July 2013 - 05:31 PM

I look forward to your post and any others who could shed some light. I am highly concerned about the persistent popping in the shoulders and wrists. Also if anyone has any ideas on how to add calories for someone who can't have gluten, dairy or eggs, that would be helpful.
 
Had an upper endoscopy and colonoscopy today. I'll get results within the next week, but it was an easy procedure. No soreness! Was up the entire night with the prep, and I'm happy to have it behind me.


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. :)
  • 0

santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: