Celiac & Neuro Symptoms

[laurie1067]

I'm posting this in hopes it will help someone else with odd, seemingly unrelated symptoms.  I started having a "lump" feeling in my chest in December along with weight loss.  My GP put me on Aciphex for GERD (at age 39 I had never had problems with my digestive tract before).  Soon after, my right thumb and left toe went numb.  I stopped taking the Aciphex & within a month and a half I had no appetite, nausea, and vomiting.  I went back on Nexium with some improvement, but the weight loss of 1-2 lbs per week continued. I went through all the neuro tests...nerve conductivity, MRI, bloodwork, etc., and no cause for the neuropathy was found.  Recently after having a short (2 hour) bout with diarrhea from a bug that was going around I ended up riding to the hospital in an ambulance because I had either vasovagal syncope or a seizure (or both...we're still not sure).  My liver enzymes were low when my blood work was done in the ER.  I am now scheduled for an EEG and had a liver panel done.  Two days later I had an endoscopy that showed a small hiatal hernia but no other evidence of anything amiss.  Thank goodness my gastro did random biopsies while he was in there.  I got a call yesterday saying that my biopsy shows a "gluten allergy."  I'll go back to the gastro on 6/4 to discuss Celiac disease with him, and they mailed me a Celiac diet yesterday.    After reading about Celiac disease on the internet all of my symptoms fit, and this disease is far more prevalent than most people know...up to 1:133 in the US.  Many people like me have almost no symptoms or the symptoms are not typical.  If you are having odd, seemingly unrelated symptoms, don't give up! There is an easy blood test that will show antibodies if you have Celiac.  A biopsy is the "gold standard" for diagnosis, but the blood test will give the doctor a good idea if biopsy is needed.

[Northcoast]

My sister has celiac.  She was diagnosed as a toddler and was put on a restricted diet (all I remember is the puffed rice cereal she ate).  As she got older she ate a regular diet.  Then in her early 40's she had a terrible bout of diarrhea for weeks and weeks that she self medicated with medicine from the drug store.  Then her doctor said to stop eating ANYTHING but crackers and water and see what happens.  It stayed the same, since crackers were made of the wheat gluten that she was allergic to.  So, she had all the scopes and the doctor announced that she had celiac disease.  My sister said "oh, yeah I had that as a kid".  The doctor said "why didn't you tell me that!" jokingly.  She didn't think that a disease she had as a 3 year old was relevent. Here it never goes away but she just could tolerate the gluten in her diet for most of her life.  So she went on a restricted diet, which is quite difficult in our society of pasta, bagels, bread, etc.  She eventually went back to eating regular food and was fine for a couple of years.  Then it flared again and she vowed to be very good about her diet from here on out.  There are some gluten free foods in many health food stores.  I bought her a bunch of them (and they're expensive!) for Christmas one year.  She said that most were pretty bad though.  But she enjoys rice pasta.  Good luck with your health.  

[laurie1067]

Thanks for your response.  I'm discovering that just about everything has wheat in it...from lipstick to vitamins to the glue on envelopes.  I have almost no food in my house that doesn't contain gluten, and I'm almost afraid to see how expensive gluten free foods at Whole Foods are when I go shopping tomorrow.  ARGH!  After going to the neuro and going through all the neuro tests, I'm just relieved it's not something like MS.  I hope that my post will help someone else who's going through all the neuro testing and getting no answers.  My main symptoms have been evenly divided between neuro and gastro without any of the "typical" celiac symptoms other than weight loss.  I hope your sister continues to be well. :)