Jump to content

  • 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

Mayo Appt

Sharonmarie

Recommended Posts

Sharonmarie Rookie
Sharonmarie
Posted

There is a Celiac Clinic at the Rochester Mn. Mayo. Clinic!

I am so happy to have discovered this!

I have an appointment there tomorrow. June 25 2013 .

Wish me luck!

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

Celiac.com Sponsor (A8-M):


bartfull Rising Star
bartfull
Posted

I have known many people who went to the Mayo Clinic in Rochester. Believe me, you are putting yourself in VERY good hands. Let us know how it turns out. :)

1desperateladysaved Proficient
1desperateladysaved
Posted

Have a productive time!

Sharonmarie Rookie
Sharonmarie
Posted
  • Author

I have known many people who went to the Mayo Clinic in Rochester. Believe me, you are putting yourself in VERY good hands. Let us know how it turns out. :)

Thank You so much. I was diagnosed ten years ago with Celiac. And I have been on a very strict gluten free diet since then.

But. My condition steadily gets worse.

I am cautiously hopeful.

Sharonmarie Rookie
Sharonmarie
Posted
  • Author

I am so sad to say I was totally disappointed. The ( cealic Doctor ). Was tunnel visioned!

I can not understand why I would require another upper endoscopy when I have been diagnosed with celiac disease. My numbers are very high from the blood tests they did.....

My complaint right now is that my feet,legs and arms are so extremely painful right now.

Also the backs of my thighs and every part of my feet are so sensitive to everything that they rest on.

The Doctor exclaimed that it is a nerve problem and has nothing to do with celiac disease! She can't help me!

Right now I feel like there is no help.

Thanks for listening.

kareng Grand Master
kareng
Posted

I am so sad to say I was totally disappointed. The ( cealic Doctor ). Was tunnel visioned!

I can not understand why I would require another upper endoscopy when I have been diagnosed with celiac disease. My numbers are very high from the blood tests they did.....

My complaint right now is that my feet,legs and arms are so extremely painful right now.

Also the backs of my thighs and every part of my feet are so sensitive to everything that they rest on.

The Doctor exclaimed that it is a nerve problem and has nothing to do with celiac disease! She can't help me!

Right now I feel like there is no help.

Thanks for listening.

 

 

If your Celiac antibodies are still high, 10 years later, they will want to do another endoscopy to see how big a mess it is in there.  They will also want you to really tighten up your diet.

 

If I miss understood what you wrote, and your antibodies are fine, then I don't see a reason for another endo unless you told them you were having GI issues.  IF your antibodies have been fine  for 10 years, then he may be right that your other issues have nothing to do with Celiac.  Every illness we get isn't related to Celiac.  Maybe you should see a neurologist or maybe an ortho doctor about the leg & feet pain.

Sharonmarie Rookie
Sharonmarie
Posted
  • Author

If your Celiac antibodies are still high, 10 years later, they will want to do another endoscopy to see how big a mess it is in there.  They will also want you to really tighten up your diet.

 

If I miss understood what you wrote, and your antibodies are fine, then I don't see a reason for another endo unless you told them you were having GI issues.  IF your antibodies have been fine  for 10 years, then he may be right that your other issues have nothing to do with Celiac.  Every illness we get isn't related to Celiac.  Maybe you should see a neurologist or maybe an ortho doctor about the leg & feet pain.

My IgA was 103.0 . That was why my general Dr. Referred me to the Celiac Dr. Even though my complaint was about the pain and discomfort through my entire body.

Pain in arms and legs. I did not complain about digestive issues.

I feel like they see me as $$$ signs.

I just love your quote about this party LOL

I shall make the best of it. :)

Sorry for my negativity.

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

My IgA was 103.0 . That was why my general Dr. Referred me to the Celiac Dr. Even though my complaint was about the pain and discomfort through my entire body.

Pain in arms and legs. I did not complain about digestive issues.

I feel like they see me as $$$ signs.

I just love your quote about this party LOL

I shall make the best of it. :)

Sorry for my negativity.

was that your total IgA? if so, that is WNL, I think. 

  • 4 weeks later...
Sharonmarie Rookie
Sharonmarie
Posted
  • Author

was that your total IgA? if so, that is WNL, I think.

What is WNL ?
frieze Community Regular
frieze
Posted

With in Normal Limits.....

What is WNL ?

AlwaysLearning Collaborator
AlwaysLearning
Posted

Sharonmarie.

Get yourself tested for vitamin deficiencies. They go hand in hand with the malabsorption problems that come with gluten allergies and some of what you are describing with the leg pain is a symptom of B12 deficiency, I think. Either that or vitamin D.

Sharonmarie Rookie
Sharonmarie
Posted
  • Author

Thank you for your reply. The Celiac Doctor advised I go off all supplements. Which I have done. I feel very depressed and alone. I think there is no help for Celiac Disease. Only perhaps for the side effects. So I will continue on the gluten free diet and.... Take pills for restless leg syndrome and for depression, and accept this condition for what it is.

AlwaysLearning Collaborator
AlwaysLearning
Posted

I have to ask, did the celiac doctor who told you to stop taking supplements run any tests for deficiencies before telling you to stop taking them? 

Granted, I'm generally anti-pill and would advise getting tested before advising taking them, but if you're having issues, I'd at least look into it further.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you for your reply. The Celiac Doctor advised I go off all supplements. Which I have done. I feel very depressed and alone. I think there is no help for Celiac Disease. Only perhaps for the side effects. So I will continue on the gluten free diet and.... Take pills for restless leg syndrome and for depression, and accept this condition for what it is.

Were you taking herbal type supplements? Some doctors might be referring to those and not to vitamin supplements. Some of them also have wheat and barley grass and say they are gluten free but we really won't tolerate them.  I can't imagine a doctor telling someone not to take a regular vitamin and mineral tablet.

You may be having celiac related nerve issues. A good neuro who is familiar with celiac could be helpful. However your GI doctor IMHO had a valid request when they wanted to do another endo. If your levels are still up they would want to see what your villi look like.  

You also mention taking medication for restless legs and depression. Have you checked with the maker to make sure they are gluten free? In addition one of the signs that celiac is impacting the brain is depression that is not relieved by antidepressant medication. Being very strict with the diet can help with that kind of depression.

Don't lose hope there is help for celiac disease. The gluten free diet. If your levels are still up it is likely gluten is sneaking in somewhere.  Give us more info on your diet and eating habits, restaurants, other gluten eaters in your home etc. and we may be able to be more helpful.

Sharonmarie Rookie
Sharonmarie
Posted
  • Author

I have had blood tests for deficancys and been told my numbers are good.

And I went to what they told me was Dietician that specialized with Celiac and showed , not a written list but all the bottles of supplements I was taking. I also took her a month long log of every food I eat and the portion sizes. She said it looked like I was doing everything right.

Then I saw a Celiac Doctor and she told me to go off all supplements. In her own words she said "Gluten Free Diet is a huge fad right now, so all the supplement company's are on the bandwagon. So even though they read Gluten Free , they may not be! "

And I have had three upper endoscopy's and I woke up during one plus after the last one I had to go back for internal bleeding! Celiac Doctor exclaimed "That can not happen".

Well it did happen And I decided I have had enough of her so called expertise!

This is why I have decided to continue the gluten-free diet and make the best of it.

Thank You for your reply.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,116
    • Most Online (within 30 mins)
      7,748
    Mary Pack
    Newest Member
    Mary Pack
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      I did ... But aren't we going to be vitamin deficienct if we are not eating due to being sick ?? If the food we eat is gluten free and we have other sensitivities , how do we get out of the cycle??  Thank you 
    • Colleen H
      Heat intolerant... Yikes

      By Colleen H · Posted

      Anyone else get pins and needles. ??? Burning feeling ? Heat makes it so much worse 😔  Winter is here.  I had to lower my thermostat because I couldn't take that hot air feeling 😔  Hopefully it goes away soon     
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.