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Mayo Appt

Sharonmarie

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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!

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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.

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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.

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    • MI-Hoosier
      Test uncertainty

      By MI-Hoosier · Posted

      Thanks again. My mom was diagnosed over 50 years ago with celiac so grew up watching her deal with the challenges of food. I have been tested a few times prior due to this but these results have me a bit stunned. I have a liver disease that has advanced rapidly with no symptoms and an allergy that could be a contributing factor that had no symptoms. I guess I’ll call it lucky my Dr ordered a rescreen of a liver ultrasound from 5 years ago that triggered this or I would likely have tripped into cirrhosis. It’s all pretty jarring.
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      Many thanks for your responses, much appreciated.  The tests did include tTg IgA and all the other markers mentioned.  I also had sufficient total IgA so if I'm reading the Mayo clinic thing correctly, I didn't really need the anti-deaminated gliadin marker? So, if I am reading the information correctly do I conclude that as all the other markers including tTg IgA and DGP IgG and tTg IgG and EMA IgA are all negative, then the positive result for the immune response to gliadin, on it's own, is more likely to suggest some other problem in the gut rather than Coeliac disease? Until I have a view from the medics (NHS UK) then I think I will concentrate on trying to lower chronic inflammation and mend leaky gut, using L glutamine and maybe collagen powder. Thank you for your help so far.  I will get back in touch once I have a response, which sadly can take quite a long time.   Kindest Heather Hill 
    • trents
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      By trents · Posted

      To put this in perspective, most recent pretest "gluten challenge" guidelines for those having already been eating reduced gluten or gluten free for a significant time period is the daily consumption of 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks leading up to the day of testing (antibody or biopsy). And I would certainly give it more than two weeks to ensure a valid test experience. Short answer: If it were me, yes, I would assume I have celiac disease and launch full bore into gluten-free eating. I think the tTG-IGA is reliable enough and your score is solid enough to make that a reasonable conclusion. Here is an article to help you get off to a good start. It's easy to achieve a reduced gluten free state but much more difficult to achieve consistency in truly gluten-free eating. Gluten is hidden in so many ways and found in so many food products where you would never expect to find it. For example, soy sauce and canned tomato soup (most canned soups, actually), pills, medications, health supplements. It can be disguised in terminology. And then there is the whole issue of cross contamination where foods that are naturally gluten free become contaminated with gluten incidentally in agricultural activities and manufacturing processes: Eating out at restaurants is a mine field for those with celiac disease because you don't know how food is handled back in the kitchen. Gluten free noodles boiled in the same water that was used for wheat noodles, eggs cooked on the same griddle that French toast was, etc.  
    • MI-Hoosier
      Test uncertainty

      By MI-Hoosier · Posted

      Thank you for the response and article. I was placed on the Mediterranean diet and been on that now for about 3 weeks. While not gluten free I am eating very little bread or anything with gluten ie a slice of whole wheat bread every couple days so assume that would cause issues now with a biopsy.  With the condition my liver is in I am unsure moving back to higher bread consumption is ideal.  In this scenario would my test results be enough to assume positive Celiac and just move forward gluten free?
    • trents
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      By trents · Posted

      Welcome to the forum, @MI-Hoosier! You are operating on a misconception about your "mixed" test results. You only had two celiac disease diagnostic tests run out of six that could have been ordered if your doctor had opted for a complete celiac panel. It is perfectly normal to not test positive for all possible celiac disease diagnostic tests. That is why there is more than one test option. It is the same way with other diagnostic testing procedures for many or most other diseases. Generally, when diagnosing a condition, a number of different tests are run and a diagnosis is arrived at by looking at the total body of evidence. The tTG-IGA test is the centerpiece of celiac disease blood antibody testing and the one most commonly ordered by doctors. You were strongly positive for that test. It was not an unequivocal result, IMO.  Having said that, it is standard procedure to confirm a positive celiac disease blood antibody test result with an endoscopy/biopsy which is still considered the gold standard of celiac disease diagnosis. Had your tTG-IGA been 150 or greater, your doctor many have opted out of the endoscopy/biopsy. The absence of GI distress in the celiac disease population is very common. We call them "silent celiacs". That can change as damage to the lining of the small bowel worsens. Elevated liver enzymes/liver stress is very common in the celiac population. About 18% of celiacs experience it. I was one of them. Persistently elevated liver enzymes over a period of years in the absence of other typical causes such as hepatitis and alcohol abuse was what eventually led to my celiac disease diagnosis. But it took thirteen years to get that figured out. Within three months of going gluten free my liver enzymes were back into normal range. Thank goodness, there is more awareness these days about the many long fingers of celiac disease that are not found in the classic category of GI distress. Today, there have been over 200 symptoms/medical conditions identified as connected to celiac disease. It is critical that you not begin a gluten free diet until your endoscopy/biopsy of the small bowel is over. Doing so before that procedure will invalidate it because it will allow healing of the small bowel lining to begin. Here is a link to an article covering celiac disease blood antibody testing:  
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