Celiac Disease Just Diagnosed - Celiac Disease Message Board

gillian30 · 07-08-2003, 05:15 PM

I've been struggling with several symptoms including dizziness, trouble walking after more than 10 minutes at a stretch, and finally diahrea for months now. I was diagnosed with POTS (a problem with a very fast heart rate) and now just last week, at The Mayo Clinic, I was told my blood tested very strongly positive for Celiac Disease. I am to have a small intestine biopsy within the next few weeks. I am wondering if anyone out there could share with me their personal experiences with this disease. I'm not looking for a "textbook" answer of what celiac is, but rather a first person account of what symptoms others have had. I know this is an autoimmune disorder and that scares me to death--how bad is that? It seems weird to have symptoms such as trouble walking and vertigo and motion intolerance and tachycardia with something like this...I understand the diahrea, but do these other symptoms fit with celiac? Any help would be EXTREMELY appreciated!!! Thanks in advance.

ps) not one single person in my immeadiate or extended family has ever had this problem, yet I've heard it's inherited!?

jboon · 07-08-2003, 08:10 PM

I thought Celiac Disease was a condition in which the body can't tolerate gluten (a kind of protein found in grains). If I'm correct, it's usually diagnosed before the age of 3 due to intestinal symptoms. But, since intestinal-related symptoms can be due to many other conditions, I would think that people could be diagnosed with other ailments if they weren't specifically tested for Celiac disease, thereby not getting diagnosed properly until adulthood. I do know that there are many wheat/gluten-free foods at health food stores and in the specialty aisles of many supermarkets. My son was thought to be allergic to wheat products when he was little, so we had to buy products made with rice and soy. And many of the items we bought were geared for people with Celiac Disease. As far as I know, Celiac Disease is a chronic condition, not anything terminal, and I believe if a gluten-free diet is followed, most symptoms improve or disappear within several weeks or so. Hope this helps a little. Good luck!

gillian30 · 07-11-2003, 06:53 PM

Thank you all so much for your relplies, and for the great web site information! I'll check those sites out right away. It's a relief to know that celiac can cause other symptoms than the standard gatroentestinal kind. I still don't quite understand how it is that all my life I have eaten anything and everything without a single symptom or problem...then at age 29 became extremely ill with debilitating symptoms which started with vertigo and didn't include stomach upset until a year later. Perhaps those sites you mentioned may answer those questions.

Indianagurl32 · 09-13-2004, 06:28 AM

Just wanted to add my experiance. I have been ill for almost 2 years now. I have had every test imaginable. I am 33 years old. I started with problems while eating. I would get a rapid heart rate and get extremely tired. After afew months I started having neuro problems. Tingling,weakness,dizziness,etc... I was tested for MS and was cleared on that. Recently I started having non-stop diarrhea which landed me in the hospital after going into shock from low potassium. Finally the doctors decided to test for celiac because they said I have all the symptoms and I look malnurished. I have not gotten the results back yet but they have started me on a gluten free diet. They tols me my neuro problems could be from celiac. I also have white spots on my brain MRI and that can also happen in celiac. I also have lost sensation in both my big toes. Con*****t muscle twitches.They tell me all of my symptoms can be tied into celiac. Find a good web site on this disease and you will be amazed at all the things that can go wrong with long term untreated Celiac. My mother,grandmother and brother all have other auto immune diseases. I am currently on Zoloft for my fatigue and Acecol for the diarrhea. Was on protonix but it quit working after about 8 months of use. Was also on Torol in the begining to control my heart.

Losec20mg · 09-13-2004, 11:18 AM

iv been on the gluten free diet for about 8 months now and, gained 50 lbs..and, still feel the need to gain..but i think iv preety much reached my normal weight..i was very weak and, always tired all my life anemia, depression, joint pains, diarheea, constipation, irritability..iv had everything..but i feel great now, iv never felt better..my diet is encredibely healthy..all natural im eating so healthy..i wish everyone could eat like this..bacuz gluten is linked to so many diseases..its not even funny..ei

make a search on the symptoms..its really sad that people are eating this stuff..it wasn't made to be eatin by humans..they test rats with gluten and, they die from it..could you imagine what it does to us..

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evrything will be fine..trust me..