Celiac Ataxia/ivig Treatment?

[sandih12]

Hi all

 

I have been reading the boards and finding many useful tip and information.  A little about me....I am 57 yo female, extremely healthy and an athlete.  I have been on a Paleo diet for over 3 years, which is gluten free.  I work out at least 5 days a week and also (try) hot yoga at least 3-4 days a week depending on fatigue level.  Prior to this diagnosis of Celiac Ataxia, I ran two half marathons in SF and was doing CrossFit which is Olympic weight lifting.  I was severely overweight 10 years ago, lost close to 100 lbs. and have maintained a very healthy life style.

 

Fast forward to now...I am struggling with gait, imbalance and have brain fog and fatigue.  Interesting fact I can jog fine yet walking can be difficult as I do the "drunk walk".  I am ever so careful about cross contamination and basically eat out very little for fear of gluten.  I feel that diet and exercise are key to helping with the symptoms of ataxia so there are time I push myself to get to the gym or yoga.  My diet consists of fresh food and nothing out of a box or package.  It is very frustrating when the brain fog sets in as I feel there was something gluten attacking my body, and this last episode lasted two days.  Today I feel better!  I take one day at a time.

 

I am fortunate to live in the SF Bay Area so UC Berkeley and Stanford are accessible.  So far I have an appt. to visit UC Berkeley as there is a team there who obtained a grant to study this horrible illness.  I will be sure to post any updated information.  I see my neuro Monday May 4th to discuss options.  Has anyone here had experience or knowledge of IVIG treatment for this?  I would be grateful to hear any information.

 

I feel I am in the very early stages of this, as I can walk (some days are harder than others as the imbalance makes me dizzy).  ALL my test including MRI and CT are normal as well as endo.  I told the doctor I feel like a hypochondriac because I feel horrible yet all my tests come back normal.  I have issue when turning corners and the brain fog impairs me driving (so I don't drive on days I feel heavy brain fog).   

 

I am hoping that there is more additional information from members here and will contribute my findings as well.  I am joining the UC Research in hopes to pay it forward as they are not a treatment center only research.

 

Thank you for your time and hope to get some replies, especially on the IVIG Treatment.

[ravenwoodglass]

I have never heard of the treatment you are speaking of so I can't give any info on that. I had severe ataxia at diagnosis and it does take some time to resolve. I found I was extremely sensitive to even the smallest amount of cross contamination. Do read the Newbie 101 thread at the top of this section to be sure you are not missing any possible sources of CC of which you haven't thought.  While your paleo diet is gluten free we need to take more precautions than just food choices to protect ourselves. For example not kissing gluten eaters/drinkers until they have brushed their teeth, seperate colanders, toaster, condiments, butter, etc., not baking or cooking with flour for others, eliminating gluten from toiletries....

What was most helpful to me was a good physical therapist who helped a lot with my regaining my balance. Have they checked your B12 levels? You want to be sure they are where they should be. Have they run or rerun a full celiac panel? If not it would be a good idea.

Ataxia is rough and it seems it can take a long time to heal. Do research the drug therapy they are thinking of using so you will know of any possible side effects or contraindications. 

Hope this gets better for you soon.

[sandih12]

I have never heard of the treatment you are speaking of so I can't give any info on that. I had severe ataxia at diagnosis and it does take some time to resolve. I found I was extremely sensitive to even the smallest amount of cross contamination. Do read the Newbie 101 thread at the top of this section to be sure you are not missing any possible sources of CC of which you haven't thought.  While your paleo diet is gluten free we need to take more precautions than just food choices to protect ourselves. For example not kissing gluten eaters/drinkers until they have brushed their teeth, seperate colanders, toaster, condiments, butter, etc., not baking or cooking with flour for others, eliminating gluten from toiletries....

What was most helpful to me was a good physical therapist who helped a lot with my regaining my balance. Have they checked your B12 levels? You want to be sure they are where they should be. Have they run or rerun a full celiac panel? If not it would be a good idea.

Ataxia is rough and it seems it can take a long time to heal. Do research the drug therapy they are thinking of using so you will know of any possible side effects or contraindications. 

Hope this gets better for you soon.

Thank you ravenwoodglass for your reply.  I have been tested for B-12 levels and have asked doc to check Gliadin antibodies which I read are proteins in blood that react with celiac.  I also follow FODMAP and take great care in the kitchen with all items used for cooking to avoid cross contamination.  The frustration as many know, is everything comes out normal test wise yet you still experience symptoms.  

 

I will inquire Monday about a more extensive Gluten panel just to be sure.  I appreciate your time, thank you!

[kareng]

If you are eating gluten free for the last 3 years, you shouldn't have antibodies to gluten. Therefore, the tests should be negative. You need to be eating gluten for an extended period of time for your body to make enough to show up in the current blood tests, Did you originally have positive blood work or endoscopy for Celiac? Maybe you don't have Celiac? It seems odd that a new symptom would develop after 3 years gluten free.

[sandih12]

If you are eating gluten free for the last 3 years, you shouldn't have antibodies to gluten. Therefore, the tests should be negative. You need to be eating gluten for an extended period of time for your body to make enough to show up in the current blood tests, Did you originally have positive blood work or endoscopy for Celiac? Maybe you don't have Celiac? It seems odd that a new symptom would develop after 3 years gluten free.

Hi Karen and thank you for your reply.

 

My feeling is that I have had this for a very long time and never realized it.  When I prepared for the endo I was told to eat gluten for a period of three weeks.  By end of week one, I was miserable, ill and stopped. My doctor shared that although my tests were negative which made sense as you pointed out am gluten free, the symptoms speak for themselves.  While eating the gluten for that small time period, I was bouncing off the walls, brain fog, inability to focus, gut pain and bowel problems not to mention the awful bloating.  Being Paleo for so long I thought this would be an easy fix since I don't eat foods with gluten but until I adopted FOMAP and realized eating garlic and onions were at the top of the list, I realized it was the food as garlic and onions were a staple in my cooking.  The IVIG was suggested but there are only clinical trials and some have been successful others have not.  I also have hypothyroidism which some articles read is commonly found with auto-immune issues.  I am extremely careful with makeup, cross contamination and rarely eat out for fear of being glutenizied.  

 

I have been to two neuro's and both said the gait issues, inability to balance, unable to walk heel to toe unassisted, changing directions when rounding a corner walking making me more imbalanced in addition to brain fog definitely speak Gluten Ataxia symptoms.  I was also told that a patient necessarily does not have to test positive as they rely on blood work but also symptoms.

 

I feel very fortunate that this is a mild case of ataxia or the early stages as my heart goes out to those who have more progressed issues.  I challenge myself daily to battle the fatigue, walk or jog daily in addition to hot yoga and gym.  I see the neuo Monday and will get a better idea of what is ahead as she consulted with her colleagues over at Mayo who have more knowledge.  I also am going to UC Berkeley to visit with them to gain more information as they have a team researching ataxia. 

 

Thank you again for your time.

[kareng]

I think you should quiz the doctors thoroughly. I don't understand the comment that they told you that gluten is in your antibodies. You tested negative - so there aren't any antibodies and the gluten isn't inside them. I think they want to treat you for something, but I don't think you are understanding the full scope of what the problem is. I'mglad you are seeing other doctors. Please ask them a lot of questions and tell them to explain it to you like you know nothing. That way they, hopefully, won't skip over important stuff.

[sandih12]

Karen - that is what I plan on doing as the IVIG treatment only has clinical trials, some prove to be successful and some do not. For me, this would be my last ditch effort as my goal is to do this without something that has not been proven 100% effective.   I revised my prior post accordingly as I read and research more on the IVIg treatment and . Thank you for your thoughts and I will post any updates to hopefully help others going through this.

[sandih12]

I just wanted to update as promised.  I had an 90 minute visit with my neuro and they have done extensive blood work including sending my blood samples to the Mayo Clinic Neuro-Immunology clinic for evaluation. Their finding suspect an unidentified autoimmune ataxia associated with celiac disease.  After a long talk, the doctor realizing that I was not keen on drugs, finally said you can't fight this alone and I decided to give in as I want my life back.  

 

I am still scheduled to see the team at UC Berkeley Monday prior to treatment Tuesday which is when the IVIG is scheduled to begin.

 

Thank you for your input.

[LauraTX]

For those reading, IVIG stands for intravenous immunoglobulins.  It is what I receive for my immunodeficiency.  There have been some trials done with IVIG for autoimmune issues, but in very general terms, in many cases it is found that very high doses are needed to help, and because a standard IVIG dose can run around 15 thousand dollars (varies by product and dose) these treatments are not cost effective for long term use.  

 

Also, once you start on IVIG treatment, any blood test involving immunoglobulins (IgA, IgG, IgM, IgE) can be a false positive, because you are receiving bolus doses of immunoglobulins that are derived from donor plasma.  So, the celiac disease tests that involve IgA and IgG can potentially be false positives while you are on IVIG therapy, so do keep that in mind if you do Celiac testing and consult the study doctor if you are doing any kind of antibody testing outside of their office.  Also, IVIG therapy has many side effects associated with it, and it can be quite unpleasant for the average patient.  These are at average replacement doses for an immunodeficiency patient that I am referring to- and because it is life sustaining treatment we have to deal with it or we will be more sick.  This is also a hurdle for other uses of IVIG especially when it is very high dosing.  But the cost is the #1 stand out problem.  I hope everything goes smoothly for you in the study and you see some good results.

[frieze]

please research CoQ 10 and ataxia.  good luck.

[sandih12]

please research CoQ 10 and ataxia.  good luck.

I do take CQ10 and have been for years, but in reading some are taking 300 mg.  Can anyone share what dosage seems to help? 

 

Many thanks!