Help Please!

[A Canadian]

When I was a baby and young child, I was very limited in what I could ingest and suffered failure to thrive. My mother, at the same time, was very very ill with what was later diagnosed as celiac disease (biopsies...the whole nine yards). I lived life as a normal child with no food exclusions appearing to be necesary. My biggest problem in life (health wise) was my weight and always has been. Having tried every other "standard" diet option out there I finally resorted to a low carb diet in January of 2004. I started in the 250 pound range and 12 months later I weighed half that and never felt better in my life. As most of you will know, the low carb plan reduces the amount of carbs and I found myself on a diet of lean proteins, healthy fats, tons of veggies, grains such as Flax but absolutely no wheat or other gluten containing foods. Anyway...to make a long story short, by the end of 12 months I weighed half of my original body weight and was running competitively and had never felt better. I kept the weight off and continued with this way of eating for a few years but somehow about a year ago (maybe a little bit longer) I fell off the proverbial wagon and bread became a big part of my life again. Needless to say, I've gained back the weight but I'm also finding I cannot sleep for more than about 20 minutes at a time , I have terrible systemic pain that is absolutely agonizing and is severely limiting my day to day mobility, my vision is hazy by evening most days, my body hurts so much by dinnertime that I get around my house by clinging to the furniture for support, severe bloating, gas and very unpredictable diarrhea and joints so swollen in my lower limbs that I can barely even move my ankles...my feet barely look like feet they are so swollen. I asked to be tested (blood test) for celiac disease due to my mother's diagnosis and believe it or not, I actually had some doctors refuse. But finally I had it done and it came back negative!!!! I tend to view my low carb time as being like an exclusion diet and recently read an article about non celiac gluten intolerance and it was like a light bulb came on..LOL (Finally!!) I would be very interested in the opinions of the folks on here as you are all very knowledgable and have a vast experience with conditions such as this. I'm sorry this is so long but doctors don't seem open minded enough to want to get to the bottom of anything resembling chronic severe pain. I work in health care and see the bias very often...it's sad. Anyway...over to you all...I very much look forward to your comments and shared experiences so that I can maybe get the relief I so deperately seek. My health has deteriorated so badly that two months ago, I suffered a major MI. I'm only 45 and I'd like my life back!

[maile]

hi there and welcome!

it certainly sounds like you could be one of us, fatigue, joint pain and many of the symptoms you describe are all quite common with celiac/gluten intolerant people.

Do you know which blood tests your doctor did? was it the entire celiac panel or just the EMA? if it was the latter it would be worthwhile to get retested (make sure you are still consuming gluten) but for the whole celiac panel...particularly if your mother was diagnosed.

if a full diagnoses is not important to you then I would suggest going gluten free for a month or so and see how you feel. Diagnosed or not the "cure' is the same: to eat gluten free.

[A Canadian]

Do you know which blood tests your doctor did? was it the entire celiac panel or just the EMA? if it was the latter it would be worthwhile to get retested (make sure you are still consuming gluten) but for the whole celiac panel...particularly if your mother was diagnosed.

Hmmm..good question....I had the TTG test done...what else should I be asking for?

[maile]

the full panel is:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

My GP only did the EMA and while that is supposed to be specific to celiac if you are low Total Serum IGA then the results aren't worth a hill of beans.

[YoloGx]

My understanding is that "Failure to thrive" (i.e., not growing) as an infant is due to being introduced to gluten containing grains. This is a classic symptom of celiac sprue. The fact your mom has celiac doubles this indication. Due to this and your response as an adult both on and off gluten, I don't think you really need any more tests than that. Your huge body responses to gluten really seem to indicate celiac. Of course you can do the tests if you want, but to me its clear you need to stay away from gluten.

Bea