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LDJofDenver

Member Since 19 Aug 2008
Offline Last Active Apr 29 2014 10:18 AM
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Posts I've Made

In Topic: Gluten Ataxia

29 April 2014 - 10:11 AM

Ataxia as adult celiac.  Greetings.  I had pretty significant "gluten ataxia" (from what I understand the antibodies that attack the small intestine also attack specific type of cells in the cerebellum - I'm not a medical person, I'm sure you can google this and get some info).   I was not diagnosed with Celiac Disease until in my 50s.  Among other problems, my ataxia indeed affected my balance and gait -- my Dr. suspected MS (terrifying!) and I was sent for an MRI. Thankfully that was negative and MS ruled out, but I relay that to illustrate how significant the symptoms were.  Shortly thereafter I was diagnosed as Celiac, and I would say the 3-6 month mark is pretty much where my improvement happened. I remember reading at the time that "neuro" problems take longer to resolve, once you are on a gluten free diet. I am thrilled to say that ALL of my neuro problems were completely gone in 6 months.  I hope this is the case with your son. I have had no relapse, except if I get significantly "glutened" I'll be wobbly and/or dizzy next day or two thereafter.  Best wishes for your son's recovery.


In Topic: Diagnosed, Now Do I Worry About Other Stuff?

24 April 2014 - 01:06 PM

Whoa!  Slow down and take it one step at a time!  You've only been gluten free for a month.  It takes awhile for your body to rid itself of the lingering antibodies (I read somewhere that the antibodies have a half-life of 3 to 4 months).  It also takes some time to heal, start absorbing nutrients again, and use those nutrients to start making all the repairs.  In my opinion, 3 months for follow-up bloodwork is asking a bit much.  I think the typical timeframe is 6 months. 

 

Still having symptoms only one month into gluten free is not uncommon.  In fact, often the symptoms get worse before they get better.  That said, dairy is a common culprit for continued issues.  You could try not eating dairy for a few days, then eat it, and see if there is a correlation with the diarrhea.  Also, make sure you are 100% gluten free.  Go through all of your food, supplements, etc. one more time - read every label carefully.  Stick to whole foods for the first 6 months or so - no processed crap.  And don't eat out either - not forever, just for the first 6 months or so.  Just so you know that you are 100% gluten-free and not getting any cross-contamination. 

 

If your symptoms don't go away significantly after 3 - 6 months, then you can pursue other tests for other possible ailments.  Yes, it's true that some people never really heal - but that's rare.  And you're way too early in the healing process to be worrying about that!

You may be able to have the endoscopy without adding gluten back, especially since you've only been gluten free for a month (my endoscopy was a couple months after going gluten-free and still showed extreme damage and confirmed celiac disease) - contact a G.I. doctor and see what they have to say about it.  Also, given all the vitamin deficiencies we celiacs suffer from, probably worth an appointment with an endocrinologist -- I had to be on prescription level Vitamin D for almost 2 years.