Did You Know? Gluten Ataxia and Celiac Disease

I have had gluten ataxia and biopsy diagnosed Celiac for about 20 years. I had difficulty walking, seizures, and severe memory issues. The first neurologist told my husband I was crazy and needed to see a psychiatrist. We did that. Fortunately we found a good psychiatrist. The psychiatrist said I had some depression due to the fact I was so ill, but my physical symptoms were real. We also contacted the Celiac Disease Center at Columbia Presbyterian, Dr Green told the neurologist that my issues were real and suggested IvIG treatments while waiting to see a neurologist that specialized in Celiac.  The IvIG helped with my balance, walking and memory to the point I was able to take care of myself and regain some independence. After several years of treatments every 6-8 weeks, our insurance stopped paying for the treatments. They were too expensive to pay for on our own, so the treatments stopped. My problems returned in full force after just a couple months. While waiting for an appointment our family physician suggested a medication that is a form of a vitamin B complex. My blood accepts B vitamins but my brain can not use it in the typical form. Cerefolin is a form of vitamin B that is already broken down in away that my brain will absorb. It is a prescription, of course not covered by insurance, but for me it is a wonder drug. I was able to return to working full time, going to school taking care of my family. I am now in my mid 60s and retired. I am still doing well on Cerefolin and a gluten free diet. Never give up.

I truly believe that my mother had gluten ataxia. She passed in 2001, only 5 years after getting an MS diagnosis. She was only 44 years old. I got a Celiac diagnosis in 2007 after 10 years of stomach issues.

I was diagnosed as Celiac when I was 45, now I am 57. Years and years of steady decline to include ataxia and aphasia. Many of the misdiagnoses I received included, white matter brain disease, lyme disease and the worst part was my elbows covered in Dermatitis Herpetiformis while doctors performed celiac panels and endoscopies without noticing nor did they ever check for DH. I figured it out on my own after research and the near death of my youngest child who was emaciated and the subsequent death of my mother who suffered from ataxia, aphasia, and heaven forbid Alzheimer's, which I don't believe. 4 foot 11 and wasting away and the best the doctors could come up with was Alzheimer's.

I have always told every doctor that I have seen I can tell when I will have a gluten reaction by the onset of severe depression that precedes the intestinal or skin reaction. If all these many scientists would listen to their patients we would all be diagnosed sooner and lead healthier lives. I self diagnosed myself with the help of my daughter who worked in her college library. The college had a medical school. A self diagnoses of dermatitis herpetitaformis after 10 years of suffering and many treatments of steroids and antibiotics and wasting syndrome. I've been gluten free for 37 years. I seldom buy or make gluten free products relying on a diet of wild caught fish, vegetables and some fruit and certain nuts. I still work and am the healthiest person my age I know. I'm a walking miracle and I am grateful for my celiac disease diagnoses as many, too many die without proper care.  

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DESCRIPTION CerefolinNAC®  is  a prescription  medical  food  for use only  under  the  supervision  of a physician  for the  clinical dietary  management  of mild  cognitive  impairment  and is  specially  formulated  to  meet  the  distinctive nutritional requirements  for this  condition. Each  CerefolinNAC®  caplet  contains  

• 6  mg  of  L-methylfolate  Calcium  (as  Metafolin®)  and  90.314  mg  of Algae-S  Powder  (Schizochytrium)***,
•  2  mg  of Methylcobalamin  and  
• 600  mg  of  N-Acetyl-L-Cysteine.

INGREDIENTS N-acetyl-L-Cysteine,  Silicified  Microcrystalline  Cellulose NF,  Algae-S  Powder  (Schizochytrium  Algal Oil [Vegetable source],  Glucose  Syrup  Solids,  Mannitol,  Sodium Caseinate  (milk),  Soy  Protein,  High  Oleic  Sunflower  Oil, 2% or less  Sodium  Ascorbate,  Tricalcium  Phosphate, Tetrasodium  Diphosphate,  Natural Flavors,  Soy  Lecithin, and  Mixed  Natural Tocopherols  and  Ascorbyl  Palmitate [as  antioxidants]),  Polyvinyl  Alcohol,  Croscarmellose Sodium  NF,  Titanium  Dioxide,  Polyethylene  Glycol  3350, L-methylfolate  Calcium  (Metafolin®),  Magnesium Stearate  (NF,  Vegetable  Source),  Talc,  Methylcobalamin, Beet  Powder Red  (color),  Caramel  FCC  (color),  Carnauba Wax.  

Contains  Milk  and Soy

CerefolinNAC®  caplets  do  not  contain  lactose,  yeast  or gluten. CerefolinNAC® is  a  prescription medical  food for  use only  under  the  supervision  of  a  physician. Medical foods  are  intended  for a patient  who  has  a limited  or impaired  capacity  to  ingest,  digest,  absorb,  or metabolize  ordinary  foodstuffs  or certain  nutrients,  or who  has  other special  medically  determined  nutrient requirements,  the  dietary  management  of  which  cannot be  achieved  by  the  modification  of the  normal diet alone.

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*** Note, the methylfolate combo is almost identical to prescription DEPLIN® 7.5. Deplin is a treatment for folate deficiency only and does not provide other vitamins. 

Metafolin®, methylcobalamin, and NAC are all available over-the-counter. The Cerefolin website also says, "If your insurance company does not cover the cost of your prescription, Brand Direct Health® pharmacy guarantees you will pay no more than $58/month" ($174 for a 90 day supply).