Help?! Celiac/not Celiac?

[KHam]

I have been sick for about 2 years now on and off.  I do have some stomach troubles.  Every once in awhile I will have pains in my abdomen like needles poking me.  (weird, I know)  Sometimes diarrhea, sometimes constipation.  But nothing horrible, it's always been this way.  But the major problems I have been having are cognitive.  Last January I was admitted to the hospital with stroke like symptoms.  It was awful.  They found nothing on the MRI but my speech was impaired, I had pins/needles feeling all along the right side of my body, problems with walking, balance, etc.  Nothing showed up on the MRI.  Good news, but baffling.  I have had a pretty bad case of vertigo which flairs up from time to time.  I also have pretty bad leg pain intermittently.  My memory is poor at best.  I can't remember ANYTHING!  I have ZERO energy.  I have to take a two hour nap every stinkin day.  Recently, I had a ferritin/iron test done and found out that I am extremely deficient.  However, I am not anemic.  My hemoglobin is at the lowest point of normal.   So with the low iron my doc was concerned about celiac and I had the blood tests done.  Negative, hallelujah!  But GI doc was concerned about internal bleeding so I had a ENG/colonoscopy.  A biopsy of my small bowel came back stating that I had lymphocytosis.  Lymphocytosis can be attributed to any number of things...  Gluten sensitivity, MS, autoimmune, etc.  BUT, most people with GS/Celiac have these little villi that are damaged/atrophied, my villi structure looks normal. Soooo, doc wants me to go gluten free for awhile to see what happens.  I have been gluten free for about a week and have had a horrible headache almost everyday.  Has anyone else out there wound up having GS/Celiac with normal villous structure?  Just wondering if I am doing this whole gluten free thing for nothing.  Any input would be greatly appreciated and welcomed:)

[nvsmom]

Only those with celiac disease will have damaged villi. People with GS have normal villi but can have every awful symptom of celiac disease with the added problem that there is no procedure of blood tests to diagnose it.

Did you have the blood tests done? There are some in this forum who had a negative biopsy and positive blood tests, or vice versa...it can happen. If you haven't been tested, and wish to have it done, you need to continue eating gluten until the test is complete.

My withdrawal headache and fatigue lasted about 10 days I think, so you are probably most of the way through it now. Hang in there. And welcome to the board.

[Dozey]

Hi, were you tested for vit B deficiency. Those symptoms are very similar. Also check vit D as this is a big problem these days with people staying indoors so much. Just a thought.

Jo

[Kamma]

Good morning, Kham

 

Another thing to consider would be gluten ataxia of which you share some of the symptoms.  G.A. is caused by an immune response to gluten but it manifests itself neurologically (poor balance, vertigo, pins and needles (which is called neuropathy), slurring of speech, extreme fatigue, cognitive difficulties).  Some people who have gluten ataxia will show damaged villi on a biopsy examination but most do not.  Most also will experience stomach upset, constipation and diarrhea but will show no damage to their villi.

 

The immune response in celiac is an antibody attacking the enzyme Tissue Transglutaminaise 2 (ttg2) in the intestine.  The immune response in gluten ataxia is an antibody  attacking the enzyme Tissue Transglutaminaise 6 (ttg6)  in the cerebellum in the brain.  Currently there is no test on the market for measuring the antibody response against ttg6 in the brain but it's being developed and will be ready over the next few years.

 

If you have gluten ataxia, the current testing which is just for celiac (ttg2) (and which you were probably tested for) will not be able to capture it.  Currently, the only thing to do is go on a gluten free diet and see how you respond.  The neurological issues associated with gluten ataxia take a longer time to resolve than the intestinal issues on a gluten free diet.

 

There is also evidence that gluten ataxia people are extremely sensitive to small amounts of trace gluten (which is present in processed gluten free foods which have been tested to have 20 ppm or below levels of gluten) so it's recommended that gluten ataxia people start and try and maintain a 'whole foods' diet.  This would consist of meat, nuts, vegetables, rice and fruit.  Some people have problems with dairy and others do not.

 

Speaking personally, I shared the same symptoms as you and had them to the point where my balance had deteriorated to the point that walking was difficult and I spent many months just laying in my bed.  Vertigo was horrendous and I would also slur my speech. I was also experiencing seizures.   I would often joke that I had lost fifty I.Q.  points because I could no longer have a decent conversation - my head felt like it was stuffed with cotton wool and my brain processing had slowed right down.  I had alternating constipation and diarrhea with bloat.  

 

I was diagnosed with gluten ataxia last year after inconclusive results to celiac testing (ttg 2) and my neurologist recommended going gluten free.  Within weeks the fatigue had lessened and my head felt clearer.  The balance issues and vertigo took longer to resolve but I began to see subtle improvements within months.  I had to go extremely clean in my diet and removed all processed food and now stick to the whole foods diet.  After a year and a half I'm almost back to normal.  If I inadvertently get gluten in my diet through cross contamination, I have seizures, my balance is thrown off and I'm running for the bathroom and it takes weeks for the symptoms to resolve.

 

There is much research coming out on gluten ataxia.  If you are interested in examining this as a  possible cause of your symptoms, you can read more on it here: Open Original Shared Link

 

Dr. Marios Hadjivassilliou is a neurologist based out of the UK who is at the fore front of the gluten ataxia research.

 

Kind regards,

Kamma