Could I Have Celiac?

[mndyoga]

I only recently learned that Celiac was an auto immune disease. I had no idea and have been suffering from a mysterious, undiagnosed auto immune disease for well over 12 years now. Once I learned that Celiac was auto immune, I immediately quit all eating ALL gluten(I ate quite a bit over the years being vegan/vegetarian), and as soon as A DAY later I was already feeling WAY better and my symptoms were vanishing. The only other time I have been pain free and felt this good was when I would do a fast/cleanse. Probably because of the no gluten as well.

For years I have suffered from joint aches, pains, off and on severely swollen and painful knee joints that would need to get drained from time to time, very poor digestion, bloating after every meal, foggy brain, lack of energy, etc etc. The Rheumatologist I went to in the beginning, about 12 years ago tested me 3 times for lupus and some other hunches he had, but could never put a finger on exactly what I had. Whatever it was he said, it was auto immune. My immune system would go haywire and attack my body all the time, randomly. I learned to just live with it.

It's only been a week and a half since I quit, and I have not felt this good since before I started having symptoms over 12 years ago! I have lots of energy, my knees feel great, I'm clear headed, no bloating, good digestion, etc etc. I don't miss gluten one bit. In fact, the thought of it makes me kind of sick.

So, I quit because I recently started noticing that whenever I ate bready things etc, I would feel worse. Especially when I indulged in those types of foods, which I did often. I know some people have told me to get tested for Celiac before I quit gluten, but my health insurance doesn't start up until March 1st and frankly, I felt I could not wait that long to quit.

Anyway, just wanted to connect with others who have had similar experiences and learn more.

So, does this sound like an intolerance or celiac?

oh yes, and I forgot to mention, I have also has Restless Leg Syndrome which has gone away since. Other symptoms include anemia off and on since I was a child and recently an elevated d-dimer blood test.

[mndyoga]

also, is it possible to be tested in March and get a positive after not eating gluten for over a month?

Any and all info/replies would be helpful. I'm new around here and am trying my best to learn as much as I can.

Thanks so much!

[Roda]

If you wait to get tested in March after you have been gluten free for over a month you could get a false negative test.

Yes your symptoms and improvements after removing gluten do sound consistant for celiac or gluten indtolerance. It can manifest in so many ways.

[mndyoga]

If you wait to get tested in March after you have been gluten free for over a month you could get a false negative test.

Yes your symptoms and improvements after removing gluten do sound consistant for celiac or gluten indtolerance. It can manifest in so many ways.

Thanks for your reply. As much as I don't want to, do you know if it would help to eat gluten for a short while leading up to testing? I really don't want to, but will do what is necessary to find out exactly what is going on.

[AVR1962]

If you have any desire to follow thru with the testing you will need to continue to eat gluten. My doc wanted me on gluten for 2 months before he tested. I also went off just because docs could not figure out what my problem was and I was sick. So many tests were ran for months and everything turned up negative. I even told the doc that my daughters were gluten sensative so AFTER I went off gluten I was first tested for celiac. At that time I didn't know anything different. Gastro doc caught the mistake the doc made, wanted me to repeat the process and go back on glutens. I tried, made it to day 12 and got too sick to continue Gatro doc had no sympathy, told me that they would repeat the process if I came back to them with complaints so I vowed I WOULD NOT GO BACK. At that point I went gluten-free and said good-bye to knowing for sure.

All kinds of things were going wacko with my body and I ended up going to a new doc. He took one look at all my labs, just shook his head what I been thru with gastro, said they should have called it there and gave me a diagnosis of celiac.

From what I have read, you could go thru all the testing and have a negative reading, test year later and then have a positive reading. So it is up to you how much you want to go thru to try and get that diagnosis. I can say that as long as you don't have the diagnosis the docs do try to keep finding other answers to your symptoms.

Celiac effects every part of your body. It's not a matter of just being sensative to gluten. Your bnody is turning aganist itself like you mentioned in your post. I had a problem with my foot recently. Podiatry doc asked me if I had changed shoes, started a new work-out program or gained weight which I had not. He stressed to me the importance of finding the source of the problem as we were only masking the issue witiout knowing and he reapeated the questions. I then asked him if the problem in my foot could be related to celiac and he he said that was it. He said that celiac effects every function in the body.

My restless leg went away when I started supplementing with magnesium and potassium. The brain fog and mental clarity cleared eventually on a gluten-free diet, my speach even improved....have spoke for many years with a brokenspeach, almost a stutter and that is now gone.

[mndyoga]

If you have any desire to follow thru with the testing you will need to continue to eat gluten. My doc wanted me on gluten for 2 months before he tested. I also went off just because docs could not figure out what my problem was and I was sick. So many tests were ran for months and everything turned up negative. I even told the doc that my daughters were gluten sensative so AFTER I went off gluten I was first tested for celiac. At that time I didn't know anything different. Gastro doc caught the mistake the doc made, wanted me to repeat the process and go back on glutens. I tried, made it to day 12 and got too sick to continue Gatro doc had no sympathy, told me that they would repeat the process if I came back to them with complaints so I vowed I WOULD NOT GO BACK. At that point I went gluten-free and said good-bye to knowing for sure.

All kinds of things were going wacko with my body and I ended up going to a new doc. He took one look at all my labs, just shook his head what I been thru with gastro, said they should have called it there and gave me a diagnosis of celiac.

From what I have read, you could go thru all the testing and have a negative reading, test year later and then have a positive reading. So it is up to you how much you want to go thru to try and get that diagnosis. I can say that as long as you don't have the diagnosis the docs do try to keep finding other answers to your symptoms.

Celiac effects every part of your body. It's not a matter of just being sensative to gluten. Your bnody is turning aganist itself like you mentioned in your post. I had a problem with my foot recently. Podiatry doc asked me if I had changed shoes, started a new work-out program or gained weight which I had not. He stressed to me the importance of finding the source of the problem as we were only masking the issue witiout knowing and he reapeated the questions. I then asked him if the problem in my foot could be related to celiac and he he said that was it. He said that celiac effects every function in the body.

My restless leg went away when I started supplementing with magnesium and potassium. The brain fog and mental clarity cleared eventually on a gluten-free diet, my speach even improved....have spoke for many years with a brokenspeach, almost a stutter and that is now gone.

I honestly don't think I could stand to go back on gluten just to get an accurate reading. The fact that I feel so incredibly different, like renewed, healed and not sick after ONLY a week and a half! Well, I can't see what forcing myself to eat it just to get some reading on a test. It's tempting, but I am more concerned about feeling good. Hmmm.

[AVR1962]

I honestly don't think I could stand to go back on gluten just to get an accurate reading. The fact that I feel so incredibly different, like renewed, healed and not sick after ONLY a week and a half! Well, I can't see what forcing myself to eat it just to get some reading on a test. It's tempting, but I am more concerned about feeling good. Hmmm.

Good for you! Do what is best for you. I have several family membrs who have never been tested and have said just what you have here, that you don't want to go thru it all just for the diagnosis. They have all improved on a gluten-free diet.