Searching For An Answer

[dellatigre]

Hello everyone. I am thankful to have found this board. I hope it helps me to finally find an answer. I will try to make this as short as possible. I guess my main question is......could someone still have celiac despite a negative blood test? and possibly a negative biopsy. i was on prednisone during these tests. so i wonder if that would effect them.

ok, now here is my story and why i have a strong suspicion of celiac. i am irish and italian (i think it is common in irish heritage?). while training as a gymnast 10 years ago i began having major IBS symptoms, fatigue, and weakness. along with a blistering rash. i have been diagnosed with dermatomyositis. usually it is pretty treatable with meds but i have been a difficult case. the stomach/intestinal symptoms go along with the "disease" process. i am VERY weak now. i have many vitamin and mineral deficienies despite an excellent diet. i am on immunosupression therapy and prednisone to help the myositis which is an autoimmune disease.

reading all of the symptoms of celiac, it really seems like i have had it most of my life.....i have read a lot of research on the correlation of celiac and inflammatory autoimmune diseases. my docs won't help me....they dont think there is a connection. i just want to rule it out FOR SURE. because i am young , dealing with a lot of health issues and i have a great wish to be well. i was a state champion gymnast and now i am struggling to walk.

so i have requested a copy of the tests they did 7 years ago for celiac to make sure they were really done. i had a biopsy to look for crohns disease and i asked the GI doc to please test me for celiac while he was in there....he said "you dont have that" but he said he did it and i didnt have it. i never saw the results so i would like to verify that.

is it still possible to have celiac even with negative tests? a false negative? especially being on prednisone which can mask many things.

thank you for ANY info. anyone can give me. i was thinking of getting the enterolab test done. or asking my docs if they can do a genetic test for celiac.....

not sure where to go with this...but have a strong feeling i need to look into it more.

Rachael

[AndreaB]

Rachael,

Welcome to this forum. You will find a lot of loving, friendly, knowledgable people on this site.

If you can spring the money I would highly recommend enterolab for testing. They do stool testing which catches the antibody reaction in the intestines before it seeps out to the blood stream. Check out enterolab's websit Open Original Shared Link.

It sounds like you could very well be celiac or gluten intolerant. The blood tests and biospy can be negative, especially the biopsy. The blood tests depend on how advanced the antibody reaction is since it has to pass through the intestinal wall to the blood stream.

[jknnej]

I had a negative endoscopy and only one positive blood test out of the 3 that are typically done but I'm convinced my body doesn't tolerate gluten.

You have some of the classic signs, especially the deficiencies and rapid worsening symptoms.

If you are hard up for money or time you may want to try the gluten free diet. Especially if your tests are negative. Many have done this, gotten better, and never even bothered with a diagnosis because they KNEW after feeling SO much better that this was their problem.

So, that's a thought...

Hope you feel better...

[Nantzie]

I had negative blood and negative biopsy. I also had a lot of pain. I wasn't an athlete, but I also went from living a normal life, to barely being able to walk. There were a couple of years there where I was basically trapped in my house because I couldn't get my kids into their carseats without having so much pain that even if we did go anywhere, there would be no way I could get them and myself out of the car and go do whatever we had tried to leave the house to do. My husband was working 60 hours a week, and my in-laws thought I was just trying to manipulate them into doing things for me. Thank goodness I had a friend who was willing to go with me to run errands and be my extra pair of hands. All that pain was on top of all the GI stuff. I don't know what was worse, the noxious gas that seemed to happen every time I moved, or the diarrhea that was so immediate that I had to push my kids out of the way to get to the bathroom that was 10 feet away.

When I found out about celiac, I learned everything I could about it. After I thought back on it, and paid attention to how my symptoms connected with my food, I was sure that gluten had something to do with it. I had also noticed that on the days when I ate less gluten, my pain was less and my GI symptoms were less.

I went gluten free early this year. It was like somebody flipped a switch. The pain was gone. The GI problems were gone. It was just gone. It was surreal. I felt like I got a body transplant. I went from not being able to even bend over to pick up a cotton ball, to moving furniture around and taking boxes up into the attic. I can run around with my kids. And I do mean run. I can't keep up with Little Miss Track and Field anymore, but I don't care. It feels good to use my body again.

Now, I'm hoping to be able to learn martial arts (something I've always wanted to do), and maybe run a 5k at some point before I'm 40.

Two years ago, I was pretty sure I'd end up in a wheelchair by the time I was 40.

I'm not saying that you have celiac (although it sounds pretty likely to me) or that your recovery will be as dramatic as mine because everybody heals differently. But, I wanted to let you know that that kind of crippling pain can absolutely be connected to celiac.

If you have people who care enough about you that they are willing to cook for you, I'm sure they'd be willing to learn more about a gluten-free diet to at least give it a thorough try.

I HIGHLY endorse Enterolab. I think that it's much, much, much more reliable than any test that a doctor would run. All I did was the genetic test. Once I knew it was genetically possible for me to have it, I knew I'd hit the nail on the head.

If you haven't already, read my signature "line" for more.

Welcome to the board!! I hope you start feeling better soon.

Nancy

[melie]

Hi,

I've been tested twice and the blood tests come back negative. I did the Enterolab testing two months after I had started myself on a gluten-free diet because I wanted confirmation to what I had discovered after following the diet (my symptoms ceased within 10 days of starting the diet) The Enterolab tests came back positive, both for the antibodies and the genes. I think the testing is helpful, it just gives you more information but you can always start off with just the gluten-free diet to see if you see a response in your health. You can do the Enterolab testing up to two years after going gluten-free, the antibodies can stay around that long!

Good luck, I hope this helps.

Melie

[dellatigre]

Thank you all SO much. just reading these posts have given me more hope and motivation to do this. i may get the 99 dollar test from enterolab. but either way i do want to go gluten free. i have done it before but i was not strict enough. i have to really do it. i just talked to my rheumatologist and he said he would do the blood tests again to check for celiac. but that may be negative again.

i also think i should avoid dairy for a while....and corn.

i am a nutrition major so i know how to eat very healthy. i can do it....and if there is a hope it will help me to get better i can do ANYTHING.

thank you all and i will be positng on here alot i am sure.

hope everyone is well!

Rachael