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Mayo Appt


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14 replies to this topic

#1 Sharonmarie

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Posted 24 June 2013 - 03:26 PM

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!
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#2 bartfull

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Posted 24 June 2013 - 04:08 PM

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. :)


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#3 1desperateladysaved

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Posted 24 June 2013 - 04:54 PM

Have a productive time!


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#4 Sharonmarie

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Posted 24 June 2013 - 06:28 PM

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.
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#5 Sharonmarie

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Posted 26 June 2013 - 09:52 AM

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.
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#6 kareng

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Posted 26 June 2013 - 09:58 AM

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.


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#7 Sharonmarie

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Posted 26 June 2013 - 11:54 AM

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.
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#8 frieze

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Posted 26 June 2013 - 06:23 PM

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. 


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#9 Sharonmarie

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Posted 23 July 2013 - 10:01 AM

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

What is WNL ?
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#10 frieze

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Posted 23 July 2013 - 01:15 PM

With in Normal Limits.....

What is WNL ?


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#11 AlwaysLearning

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Posted 26 July 2013 - 01:02 PM

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.


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#12 Sharonmarie

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Posted 26 July 2013 - 07:20 PM

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.
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#13 AlwaysLearning

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Posted 28 July 2013 - 01:18 AM

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.


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#14 ravenwoodglass

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Posted 28 July 2013 - 02:26 AM

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.


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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)

#15 Sharonmarie

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Posted 28 July 2013 - 07:09 AM

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.
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