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Elevated Ck Level - What Could It Mean?


semily

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semily Newbie

My 3.5-year-old son was diagnosed with celiac disease just over a year ago. His TTG has gone from well over 100 to normal during that time, and all symptoms are gone.

However, in all routine bloodwork done since Oct 2012 his liver enzymes have remained elevated. His GI ordered some additional bloodwork last week to look into it. All the typical liver tests came back normal, including his AST. His CK level came back very high though - just over 2,300. The next step is to see a neurologist. The GI said the CK has to do with muscles and red blood cells. The GI called us at 7 pm on a Friday to tell us this and we're terrified of what it could mean.

For what it's worth, he is an incredibly athletic, energetic kid. No signs of lethargy or weakness since going gluten-free.


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GottaSki Mentor

Hi Semily-

Were his liver enzymes elevated at diagnosis? or is this new as of Oct '12?

First thing is try not to worry - I know - impossible for a parent, but try. Doctor has done the correct thing in transferring to another specialty -- was it neurologist or nephrologist?

Only advice I have at this point is ask lots of questions -- also make sure all "abnormal" blood tests are repeated.

Celiac can play havoc with multiple symptoms. Hold on to the fact that he has improved gluten free and will likely continue to do so.

Hang in there Mom.

Big HUG :)

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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