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I've Been Through Enough...help!

blracing

By blracing
in Coping with Celiac Disease

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blracing Newbie
blracing
Posted

I just happened to come across this forum today while searching for an answer to my symptoms. I am 25 years old, and have dealt with this horrifying sickness for 3 years now. I have been to 9 different doctors, had 4 colonoscopies, 2 endoscopies, 2 surgeries...and NOTHING!!! Both surgeries ended up showing 2 totally seperate problems. My persistant pain is on the left side, but they found a tumor on my right side in my colon and removed 2 inches. I appreciate that but it hasn't helped the probelm I went to the doctor for in the first place. No one can give me an answer to what the heck is wrong with me! I'm so frustrated! Every time I have another CT scan or any other test, I know what the result is going to be before they call (NOTHING), but I still just cry anyway. I guess I'm hoping they will eventually find something so I'll stop feeling crazy! That's exactly how I feel...like I've just plain lost it and am making it up! But I know I'm not! I hurt. I just plain hurt. I'm tired all the time, the pain is persistant, sometimes I have a lot of blood in my stool, and on occassions, like last Thursday night, I have these episodes. I will feel this excrutiating pain, throw-up, pass out, sweat a river, then have diarhea. When it's over, which is usually about 30 minutes, I feel fine... just tired.

Doctors have blamed it on IBS but I feel like that is just a way of saying "there's nothing wrong with you, get out of my office." My sister has IBS and doesn't feel like I do. I went on South Beach Diet, which cuts out sugars and breads, and felt a little better, so my doctor did the blood test for Celiac, but it came back normal.

When I was younger (about 15), I had a problem with my platlet counts and white blood-cell counts getting dangerously low. At the same time, I would get what seemed like 100 mouth ulcers and was unable to eat or drink anything. I eventaully grew out of that, but they were never able to find out what was causing it. It just makes me wonder if it's not all related somehow.

Someone please tell me...am I crazy? I read some of the forums today and just really felt like I wasn't alone anymore. I felt like there are people out there just like me. I just don't know what to do next? I've been tested for this and that and everything in between. I'm tired of being poked on. I just want an answer. I'm really getting depressed to the point I don't even like myself. It's really hurting my self-esteem. Please help!

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Guhlia Rising Star
Guhlia
Posted

If you feel as though gluten intolerance or celiac may be a problem, try going gluten free and see if that helps. It may take a few months to notice an improvement, but having an answer would be well worth that wait, wouldn't it? Blood tests don't always come back positive even if you have it and it sounds like you're pretty desperate to find some answers. I would honestly suggest either just trying to go gluten free for a while OR do the elimination diet. I hope you figure things out.

rez Apprentice
rez
Posted

I just happened to come across this forum today while searching for an answer to my symptoms. I am 25 years old, and have dealt with this horrifying sickness for 3 years now. I have been to 9 different doctors, had 4 colonoscopies, 2 endoscopies, 2 surgeries...and NOTHING!!! Both surgeries ended up showing 2 totally seperate problems. My persistant pain is on the left side, but they found a tumor on my right side in my colon and removed 2 inches. I appreciate that but it hasn't helped the probelm I went to the doctor for in the first place. No one can give me an answer to what the heck is wrong with me! I'm so frustrated! Every time I have another CT scan or any other test, I know what the result is going to be before they call (NOTHING), but I still just cry anyway. I guess I'm hoping they will eventually find something so I'll stop feeling crazy! That's exactly how I feel...like I've just plain lost it and am making it up! But I know I'm not! I hurt. I just plain hurt. I'm tired all the time, the pain is persistant, sometimes I have a lot of blood in my stool, and on occassions, like last Thursday night, I have these episodes. I will feel this excrutiating pain, throw-up, pass out, sweat a river, then have diarhea. When it's over, which is usually about 30 minutes, I feel fine... just tired.

Doctors have blamed it on IBS but I feel like that is just a way of saying "there's nothing wrong with you, get out of my office." My sister has IBS and doesn't feel like I do. I went on South Beach Diet, which cuts out sugars and breads, and felt a little better, so my doctor did the blood test for Celiac, but it came back normal.

Go on the gluten free diet and see if you have results. Don't worry about any more tests. You are your own advocate and you need to take your health into your own hands. The relief will be almost instant and you will see symptoms start to disappear. It's only hard in the beginning. Once you get the hang of it, it's like second nature. Hang in there. We're all normal, educated people. Don't feel alone. It's scary, but you will get better. :)

When I was younger (about 15), I had a problem with my platlet counts and white blood-cell counts getting dangerously low. At the same time, I would get what seemed like 100 mouth ulcers and was unable to eat or drink anything. I eventaully grew out of that, but they were never able to find out what was causing it. It just makes me wonder if it's not all related somehow.

Someone please tell me...am I crazy? I read some of the forums today and just really felt like I wasn't alone anymore. I felt like there are people out there just like me. I just don't know what to do next? I've been tested for this and that and everything in between. I'm tired of being poked on. I just want an answer. I'm really getting depressed to the point I don't even like myself. It's really hurting my self-esteem. Please help!

mouse Enthusiast
mouse
Posted

Some members on here have never had a diagnosis of Celiac or gluten intolerance, but they have found out that they can't eat gluten. You might try going completely gluten free for several months and see how you are. You might also have Entrolabs (sp) run the celaic panel on you, but most insurances do not pay for it. Someone will probably post more info on that or you can search on this forum for the info. Welcome to the forum and I hope you find some answers soon.

LKelly8 Rookie
LKelly8
Posted
When I was younger (about 15), I had a problem with my platlet counts and white blood-cell counts getting dangerously low. At the same time, I would get what seemed like 100 mouth ulcers and was unable to eat or drink anything. I eventaully grew out of that, but they were never able to find out what was causing it. It just makes me wonder if it's not all related somehow.

My (humble uneducated) guess is you didn't outgrow "it", "it" is celiac and you've had it all your life. You're not crazy! (at least not about this! :lol:;) ) You can ask in the Doctors topic if anyone knows of a good GI doc in your area. Travel to a celiac center if you can afford it. Get and keep copies of all tests.

From "Celiac the Clinical Chameleon" by Dr. Fassano:

"Celiac disease can manifest itself with a previously unappreciated range of clinical presentations, including the typical malabsorption syndrome (chronic diarrhea, weight loss, abdominal distension) affecting children, and a spectrum of symptoms potentially involving any organ system.[8] Given the low level of suspicion among healthcare professionals, particularly when the disease presents in an atypical manner, many cases of celiac disease remain undiagnosed and carry the risk for long-term complications, including osteoporosis,[9] infertility, psychiatric and behavioral disorders,[10] or cancer."

Open Original Shared Link

Open Original Shared Link ("Apthous Stomatitis" is doctor-ish for "canker sores") and symptom lists for associated disorders.

Whatever happens keep coming back and let us know how things are going!! :)

lonewolf Collaborator
lonewolf
Posted

Welcome to the board. You're not crazy! Many of us here have gotten the same run-around from doctors. Feel free to ask lots of questions - there are lots of knowledgeable people here.

As I see it, you have three options -

1) Continue to eat gluten and find a GI to run tests. If you've already tested negative for Celiac, the tests could come back negative again. Regular Celiac tests won't catch gluten intolerance, which is every bit as real as Celiac. On the other hand, it could come back positive and you'd have your answer.

2) Quit eating gluten and do you own diet challenge. You'll know relatively soon if you see improvement.

3) Order some tests from Enterolab and see what they have to say.

daffadilly Apprentice
daffadilly
Posted

An unexplained pain in the side is a common complaint, it will/should go away on a gluten-free diet. The plant lady at my office had a pain in her side & like you had all kinds of tests... She was outraged about all the money it had cost her & bad health, because once she went gluten-free the pain went away, she started sleeping all night & just felt good. (she thinks I am her guardian angel !!)

I second the comment about getting tested at Enterolab. A lot of people that have celiac or gluten sensitivity come up negative on the blood test. A negative blood test means just that, not that you do not have celiac. You can have a negative blood test & a positive biopsy...

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blracing Newbie
blracing
Posted
  • Author

Thank you all for your support! I finally am starting to feel like I'm not crazy - there are more people just like me out there.

I liked the comment about all of us being crazy. Last time I went to the dr he said that maybe I just needed nerve pills or anti-depressants. I said to him, "I can think of a million reasons I need those type of meds, but THIS is not one of them."

I spoke with the nurse today. It's so funny because this doctor has been screaming "IBS...IBS" for a year now. When I told him about the episodes (passing-out, throwing up, diarhea), he FINALLY said that it wasn't IBS, but he had no idea what was wrong with me. To me, that was great news! He is finally seeing that something isn't right :) My husband said he never thought I'd be excited to hear that the dr had no idea what was wrong with me. My point was, it's NOT IBS!!!

I told the nurse about my recent research on Celiac. Of course, her first reaction was that I tested negative for it. That just wasn't enough for me, so I told her I found a Celiac doctor at a nearby hospital and would like a referral. This must be my lucky week...SHE'S GETTING ME A REFERRAL!!! YEAH!!!

The most important thing is...mentally, I feel normal again. Physically...I'm getting somewhere. Finding this forum has saved my life.

elye Community Regular
elye
Posted

Wow, at last some light at the end of a long tunnel for you! Please let us know how it goes at the specialist's. :)

jlinc Rookie
jlinc
Posted
The most important thing is...mentally, I feel normal again. Physically...I'm getting somewhere. Finding this forum has saved my life.

Great! I'm so glad you're feeling better. i just saw your thread here, and I wish you all the best. Please let us know any further developments!

Josh.

covsooze Enthusiast
covsooze
Posted

Hi there :)

Your story sounds very similar to mine. I was diagnosed with IBS having had stomach problems for a while. My sister had already been diagnosed with celiac disease, but I had a negative blood test. Consequently, when I had an endoscopy, they didn't even do a biopsy :angry: If only I'd discovered this board back then!

I too had pains in my side (right for me). And my typical 'funny turn' as I thought of it was exactly how you describe it.

Last year, I insisted they test me again, having ended up in the ED. My blood tests were way off the scale and my biopsy showed total villous atrophy.

At the end of the day, even if you have further tests that turn out negative, nothing's stopping you going gluten-free to see if it makes a difference. If you hand around here, you'll get loads of advice as to how to do that and cope with it.

Good luck :)

GFBetsy Rookie
GFBetsy
Posted

Have they very thoroughly checked your gall bladder, too?

blracing Newbie
blracing
Posted
  • Author
Have they very thoroughly checked your gall bladder, too?

I can remember them doing an ultrasound on my gallbladder in the beginning. Everything was fine at that time. They have also done 2 abdominal sugeries - 1 laporoscopy, then in February, they removed 2 inches of my colon and also took a look around while they were in there to make sure my endometriosis wasn't back...it wasn't. I have also wondered about my spleen as well. Apparently your spleen filters your blood and if there is a problem, your blood counts could be off, which would explain my platelets and wbc. They dismissed that when I brought it up, but didn't explain why.

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