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Mystery Diagnosis

cgilsing

By cgilsing
in Publications & Publicity

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cgilsing Enthusiast
cgilsing
Posted

They had a whole segment about celiac disease yesterday! The child was having seizures, not thriving, developmental problems, but no GI symptoms. The mom had celiac disease and ended up putting the pieces together herself (figures :rolleyes: ) Anyway, it was a really good show! They actually spent some time talking about it! :)

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blueeyedmanda Community Regular
blueeyedmanda
Posted
They had a whole segment about celiac disease yesterday! The child was having seizures, not thriving, developmental problems, but no GI symptoms. The mom had celiac disease and ended up putting the pieces together herself (figures :rolleyes: ) Anyway, it was a really good show! They actually spent some time talking about it! :)

I have seen this episode before. I have to say it was scary watching him have those seziures.

marlene57 Newbie
marlene57
Posted

I saw that episode and was shocked to find out about the neurological symptoms of Celiac. I just saw the dr a couple of weeks ago because I'm losing my balance, have trouble with short term memory, problems with my eyes, and say or type things that I'm not thinking (wrong words).

Now I'm waiting for an app. with a Neur. and will ask about Gluten Ataxia which I've seen mentioned here on the board.

Marlene

They had a whole segment about celiac disease yesterday! The child was having seizures, not thriving, developmental problems, but no GI symptoms. The mom had celiac disease and ended up putting the pieces together herself (figures :rolleyes: ) Anyway, it was a really good show! They actually spent some time talking about it! :)
confused Community Regular
confused
Posted
I saw that episode and was shocked to find out about the neurological symptoms of Celiac. I just saw the dr a couple of weeks ago because I'm losing my balance, have trouble with short term memory, problems with my eyes, and say or type things that I'm not thinking (wrong words).

Now I'm waiting for an app. with a Neur. and will ask about Gluten Ataxia which I've seen mentioned here on the board.

Marlene

Marlene,

I use to have that problem of typing in the wrong words, or have to sit and think is it coach or couch or things similiar to that. But my thinking has greatly approved. I still have typos from time to time, but i type so much better now. I would forget were i just put my keys but i would remember where a toy of the kids was.

After being gluten, casein and soy free i dont have any of that happen anymore. I have the gene that causes neuro problems from gluten. So i know how you feel.

How long have u been gluten free?

paula

rinne Apprentice
rinne
Posted
I saw that episode and was shocked to find out about the neurological symptoms of Celiac. I just saw the dr a couple of weeks ago because I'm losing my balance, have trouble with short term memory, problems with my eyes, and say or type things that I'm not thinking (wrong words).

Now I'm waiting for an app. with a Neur. and will ask about Gluten Ataxia which I've seen mentioned here on the board.

Marlene

I had problems like that, I was starting to walk as if I was drunk, blurry vision and memory problems. A B12 deficiency can do that, do you know what your levels are? B12 shots helped me alot, along with dietary changes, and those symptoms have gone away.

I think many of our symptoms are linked to nutritional deficiences but that by the time we get ill ordinary vitamins can be more of a problem to digest than a help.

Another thing I do which really helps me is salt, Himalayan salt -just a half teaspoon in a large glass of water each morning. It is loaded with essential minerals and good iodine. Ordinary table salt is stripped of all minerals and then the iodine, not a good iodine, is added back in, I avoid it.

I hope you are feeling better soon. :)

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    • Dr. Gunn
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      By Dr. Gunn · Posted

      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
    • trents
      Test interpretations

      By trents · Posted

      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
    • Dr. Gunn
      Test interpretations

      By Dr. Gunn · Posted

      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
    • Scott Adams
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      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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