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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Aricept For Celiac-Induced Neuro Symptoms?
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I am a 37-year-old male.  For the past 4 or 5 years, I have been experiencing slow but progressive memory loss.  For the past 2 or 3 years, I have been experiencing a slow but progressive onset of what I can only describe as a haze or fog in my brain that prevents me from concentrating or understanding complex things.  Over the past month, I’ve noticed problems with balance, equilibrium and vision, as well as feeling “hot spots” and weakness in my arms and legs.

 

A recent blood test showed a positive EMA, tTG of 165, anti-gliadin “greater than 200” and vitamin D at 21 (all other values were normal).  A a follow-up endoscopy showed “partial to severe villous atrophy (Marsh: 3C) and intraepithelial lymphocytosis consistent with celiac disease.” 

 

I have been gluten-free for 10 days and feel mild improvement as to the brain fog, but my balance, equilibrium and muscle weakness have worsened during that time.

 

Two questions:  (1) Should I be concerned that my balance, equilibrium and muscle weakness have worsened since going gluten-free? and (2) a neurologist wants to put me on Aricept, which I understand is an Alzheimer’s "memory" drug with some common side effects that are severe.  I’m inclined to wait 2 or 3 months to see how much mental improvement I get from just being gluten-free.  Does anyone have any thoughts on/experience with Aricept to treat celiac-induced neuro symptoms? 

 

Thanks

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My celiac-related neuro symptoms resolved in time off gluten. I had several of them and at one point, even composing this message would have been a task for me. Lifting a soup can was work. I had ataxia, parasthesia and walked into walls because I misjudged distance and space.

 

It all resolved. My muscles and bones/joints were deeply affected and MS, lupus, AS etc. were all suspected, but this was not the case. 

It took me a while to see improvement, but it happened. I did not notice it getting worse, but I did not

see a magical instant change either. It was slow, steady progress.

I also had to have PT for my muscles, but you are younger and will likely rebound quicker.

 

You will have to be very patient, hon. Recovery takes time, but healing happens!

 

I found that any medications offered to me before diagnosis merely exacerbated the symptoms I had, but did not help one bit.

I found the side effects intolerable. This was just my experience, okay?.

 

I take no medications for any of the many things doctors said I had. At one time, I had maybe  13 or so 

in my medicine cabinet that I tried with no success.

 

If the memory loss, ataxia, etc. is not a progressive dementia, and you do not have lesions on the brain, etc. I am not sure what taking this drug will do for you, since the underlying cause is likely from malabsorption from the celiac.

 

Not only that, but with stage 3 Marsh , I am not sure how the doc thinks this medicine will even get absorbed right now. 

 

It's your call, of course. If you think it would help, that's for you and your doctor to determine what to do.

 

Welcome to the forum. Hang in there!

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I agree with everything IrishHeart told you.  It takes a long while to see improvement from neuro symptoms, once you go gluten free.  You have to be very strict with your diet and make sure you are not ingesting any gluten.  But you can have marked improvement with the gluten free diet, once the inflammation starts to settle down.  I had severe dizzy spells that completely went away after awhile on the gluten free diet and my blood work mirrored yours at diagnosis.

 

All doctors know how to do is symptom treat.  The medication may not work for a number of reasons, one of which is that you probably aren't absorbing normally so taking this would be a waste of time, until your gut heals.  If it were me, I would never take any medication until I see what happens with the diet. I saw miracles happen for me but it did take at least a year before I saw real improvement of symptoms and have them go away completely.  It took 3 years for all Celiac side effects to disappear.  Try to be as patient as you can and remain positive that you will heal.  :)

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My celiac-related neuro symptoms resolved in time off gluten. I had several of them and at one point, even composing this message would have been a task for me. Lifting a soup can was work. I had ataxia, parasthesia and walked into walls because I misjudged distance and space.

 

It all resolved. My muscles and bones/joints were deeply affected and MS, lupus, AS etc. were all suspected, but this was not the case. 

It took me a while to see improvement, but it happened. I did not notice it getting worse, but I did not

see a magical instant change either. It was slow, steady progress.

I also had to have PT for my muscles, but you are younger and will likely rebound quicker.

 

You will have to be very patient, hon. Recovery takes time, but healing happens!

 

I found that any medications offered to me before diagnosis merely exacerbated the symptoms I had, but did not help one bit.

I found the side effects intolerable. This was just my experience, okay?.

 

I take no medications for any of the many things doctors said I had. At one time, I had maybe  13 or so 

in my medicine cabinet that I tried with no success.

 

If the memory loss, ataxia, etc. is not a progressive dementia, and you do not have lesions on the brain, etc. I am not sure what taking this drug will do for you, since the underlying cause is likely from malabsorption from the celiac.

 

Not only that, but with stage 3 Marsh , I am not sure how the doc thinks this medicine will even get absorbed right now. 

 

It's your call, of course. If you think it would help, that's for you and your doctor to determine what to do.

 

Welcome to the forum. Hang in there!

Thank you for your detailed response.  I'm sorry that you went through that, but hearing your experience gives me hope.  I'm scheduled to get a brain MRI shorlty to look for lesions, tumors, etc., so I'm praying that will come back clean and I can focus exclusively on celiac.  One follow-up question:  I don't undetrsand the significance of the "Marsh: 3C" classification, but it sounds like you do.  Any way you can explain?  Thanks

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Integrous,

 

People sometimes  have a gluten withdrawal effect after stopping gluten.  That may last a couple weeks.  If you do a search on gluten opioids you will find articles about gluten acting like opioids on the brain.  The good thing about that is you can stop eating gluten (as you have) and recover.  It takes time though for symptoms to resolve.  You may feel much better in a few weeks and then regress and feel worse also.  Celiac recovery can be a bumpy road.

 

As your gut heals and starts absorbing vitamins and minerals better your tissues can heal.  But it is process, not an instant fix.

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Have they run vitamin panels on you? Even "low normal" levels can cause deficiency symptoms.

Look for a well rounded, basic LIQUID multivitamin. You may be extremely surprised how much it helps. Also, if you're deficient in a particular vitamin/mineral you'll probably need higher doses to replenish stores. Again, liquid if possible.

I'm sure IH will chime in but the Marsh scale is used to measure intestinal damage. Marsh 3 is a good deal of damage to your intestine.

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  The University of Chicago Celiac Center has a good explanation. The old Marsh Scale was different, there were 4 stages before, but the new one is

 

" Scores range from stage 0 (normal intestinal mucosa, celiac disease unlikely) to stage 3 (villi are totally atrophied and crypts are elongated and increased in number). Unfortunately, celiac disease is not the only disorder that can cause these changes. A celiac disease diagnosis, therefore, must be confirmed through other blood tests and the patient’s response to a gluten-free diet."

 

the "old scale" was 

 

Stage 0 The mucosa (intestinal lining) is normal, so celiac disease is unlikely. Stage 0 is known as the "pre-infiltrative stage."


Stage 1: The cells on the surface of the intestinal lining (the epithelial cells) are being infiltrated by lymphocytes, the  small white blood cells involved in the body’s immune response to disease.


Stage 2: The changes of Stage 1 are present (increased lymphocytes), and the crypts (tube-like depressions in the intestinal lining around the ville  are "hyperplastic" (larger than normal).


Stage 3: The changes of Stage 2 are present (increased lymphocytes and hyperplastic crypts), and the villi are shrinking and flattening (atrophy). There are three subsets of Stage 3: 
--Partial villous atrophy (Stage 3a) 
--Subtotal villous atrophy (Stage 3b) 
--Total villous atrophy (Stage 3c).


Stage 4: The villi are totally atrophied (completely flattened) and the crypts are now shrunken, too.

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Thank you for your detailed response.  I'm sorry that you went through that, but hearing your experience gives me hope.  I'm scheduled to get a brain MRI shorlty to look for lesions, tumors, etc., so I'm praying that will come back clean and I can focus exclusively on celiac.  One follow-up question:  I don't undetrsand the significance of the "Marsh: 3C" classification, but it sounds like you do.  Any way you can explain?  Thanks

 

Let us know how you make out! try not to get worried, okay. You've already begun to heal.

Hang tough!

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I actually consider any response (good or bad symptoms) to be good after beginning the gluten free diet.  The reason I think that it is good is because the body is moving somewhere.  I hope you can lay low for a while and just get used to the diet and heal.

 

D

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For what its worth, using Aricept for anything other than Alzheimer's Disease Dementia is an off-label use of this drug.

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I'm your age and had similar symptoms at diagnosis many years ago.   My advice is hold off on the medication.   Optimize your diet while you are not on any medication that might also alter how your brain feels.     You won't know what that is for a few months at least.     Doing this will be the best way for you to figure out which foods work for you and which don't.   Eat the most natural diet possible.   Paleo, no sugar, nothing processed.    Try BioK+ for a probiotic, soy or rice if you can find it.     Don't eat things that would put any stress on your body, including processed foods, processed sugars, caffeine.

 

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