Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Aricept For Celiac-Induced Neuro Symptoms?
0

11 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

1

Share this post


Link to post
Share on other sites

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.  :)

1

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

  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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,654
    • Total Posts
      921,619
  • Topics

  • Posts

    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
    • I don't have a lot of faith in the allergy testing naturalpaths do. I had them done, but really it wasn't very helpful. Foods that were okay on the blood work- I was still having obvious reactions to. Skin testing through an allergist didn't show up food allergies either. I agree the food elimination diet is a better way to go and doesn't cost a bunch of money. I did a whole 30 diet a while back that could have been helpful if the foods I reacted to were corn, dairy,  soy, grains and sugar- but I react to more than that.  I do need to do a major elimination diet- just haven't gotten up the willpower yet.   
    • Quick search gave too many responses to TGI Fridays but none to TGI Fridays Buns (or similar) so... I was talking with my sister-in-law (Gluten Intolerant) and she spoke highly of a pre-packaged bun from Fridays. I was hesitant but she gave me one (apparently you can buy them from the restaurant?) and I tried it. Since I'm slow to react I won't know about gluten for a bit but I can definitely say it is the closest to "real" I've had in years! Spongy, doesn't crumble while eating a sandwich and tastes good. Color me impressed! I tried to determine the manufacturer or if Fridays actually makes them but I can't locate anything worth pursuing. Anyone have information on this? Thanks in advance.
    • Thanks cyclinglady! I will!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,654
    • Most Online
      3,093

    Newest Member
    bentcreekmom
    Joined