Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Mayo Appt
0

15 posts in this topic

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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. :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

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

What is WNL ?
0

Share this post


Link to post
Share on other sites

With in Normal Limits.....

What is WNL ?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,916
    • Total Posts
      919,623
  • Topics

  • Posts

    • Depression / anxiety issues
      Hi all.  Still feeling the same way this past week. I'm thinking of dropping dairy starting from today, I don't know if I have a problem with it or not, but I drink 2 coffees a day with milk. I'm just constantly tired all the time, and getting trough the day is pretty hard, I noticed a couple of weeks ago that my sleep was improving but the last couple of days I have been waking up at least 3 times during the night, then when I get up in the morning it feels like I have been hit by a bus, like I haven't slept at all. I keep waking up during the night needing to drink water as I feel dehydrated, I don't know why as I drink 2-3 litres of water everyday 
    • No actual diagnosis/genetic results.
      About 30% of people have a gene for Celiac.  They don't all have it because only about 1% of the population has Celiac.   It is quite possible she has something else that is causing her trouble.  Sometimes eliminating gluten helps that problem, like FODMAPS.   If it were me, I would keep her strictly gluten-free for a year or so.  See if anything develops.  Then I would try her back on small doses of gluten.  If it is something like FODMAPS, she may be able to tolerate some gluten after a while.  I would do that for 3 months .  If she is having issues I would then get her tested with a full Celiac panel and, if positive, an endoscopy.  Even if the panel is negative, if she is having issues, I would pursue more testing, ends, colonoscopy, etc. For schools to take a gluten-free or any special diet seriously, you will need a doctors note.  I am assuming US might be different in other countries.
    • No actual diagnosis/genetic results.
      Hi- new here but have been reading a lot of posts (Long post, last two paragraphs have actual question)  my four year old daughter probably has celiac but I don't know if I'll ever get a definitive diagnosis at this point.    Backstory: growth Delays, GI issues and a few other symptoms as a baby/young toddler. Did not have blood work done but went straight to biopsy which was negative. Always still had suspicions that gluten bothered her.    Started developing more symptoms around 3, by 3.5 they were pretty bad and her dr recommend eliminating gluten. (Blood in stool, rashes, low grade fever, joint pain, stomach pain and bloating, behavior issues) Everything cleared up quickly! Yay. Still had occasional gluten because I was under the impression it was "just an intolerance" and her symptoms kept up/got worse with each exposure. (Developed vomitting as most recent symptom) So I wanted to know if it was celiac. Can't do blood or biopsy since she's been mostly off gluten for months by this time.  I really was hoping to have a concrete answer and diagnosis, So we did genetic testing recently. It came back positive for half of DQ2 (beta subunit). Her dr isn't giving her official diagnosis but says "she is at a fairly low risk" but with her symptoms doesn't that mean she has developed it??!   Either way he says to keep her off gluten but I don't understand why he won't diagnose? Right now I am just telling people (besides family) that she has it because it's too hard to explain it all but do you think an actual diagnosis would be beneficial in any way? Should I push the issue with her dr? 
    • Awaiting Biopsy Results
      Thanks for the advice and encouragement, Gemini. I appreciate having additional insight into my situation. Celiac being the cause of my health issues makes more and more sense the more I learn about it, and eliminating gluten sounds more and more like the right choice for me.
    • Did Jennifer Esposito Leave Town Amid $43 Million Gluten-Free Bakery Lawsuit?
      The topic of this forum is "Celiac Disease - Publications & Publicity," so certainly it fits in here, and in fact, this topic is designed specifically to handle any media coverage that relates to celiac disease and/or the gluten-free diet.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,960
    • Most Online
      1,763

    Newest Member
    Ladybug99
    Joined