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Grrr...

BelievinMiracles

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BelievinMiracles Explorer
BelievinMiracles
Posted

Hi, I'm new to this whole thing. I've been having a bunch of issues for about 2 years and I have been feeling generally ill pretty much my whole life. I've had test after test done and everything is negative or looks "fine."

I just want to vent how frustrated I've been for the past two years. Doctors always think they know everything. They always tell me I have acid reflux...Dude! The pills don't work...accept it and move on and fix me! lol! No but seriously it seems like they never listen to me to what I have to say and they look at me like I'm a total paranoid freak. They also told me I have IBS which could be true partly but I don't react to any of the food they list as bad. For example I'm not a tomato eater, I just started becoming a coffee drinker a month ago (work did that) and I haven't really eaten chocolate until last year, and I've had symptoms way before that. Doctors and friends have made me feel like a hypochondriac and sadly sometimes I believe it. I think it was because I listed 20 different types of symptoms. But I know my body very well and something isn't right with it. I mean I thought it was common to have diarrhea up until high school until I talked to some friends and they say they rarely have it. And my rumbly gut, well I always told the boyfriends it was because I'm hungry and it was my stomach. I didn't want them to know I was silently farting! It wasn't until my mom looked up Celiac Disease that I looked into that, and surprising it tied my weird symptoms all together. Sometimes I don't know if I'm really not feeling good or if it's "all in my head." And when I look back at the rest of my symptoms I catch myself thinking, maybe that didn't happen or it wasn't as bad as I thought back then.

After years of testing and xrays and blood work, low and behold I just had a x-ray that showed about a fistful of gas in my stomach and all in my intestines. Sadly I was so! excited to hear that something was slightly abnormal (isn't that sad??). Maybe I was right this whole time...lol! She said that I wasn't digesting my food. So she recommended I go on a gluten-free diet, even though my gluten test (don't know which one it was) turned out negative.

It can be frustrating for me sometimes because there isn't a "test" that tells me what I have. Sometimes I feel like I'm going crazy or that I'm exaggerating. I always have to go back and remember what I've been through and how sick I was/am, and how happy I was back in the day if I had just one normal bowel movement, if one at all. Because of the no proof of a problem, I catch myself wondering if I really need or should be on this diet or is it in my head that I feel the diet is working because I'm feeling better. I just feel crazy right now and really feeling down. I always thought that I'd just feel sick for the rest of my life. I have really high hopes for this diet. I just want to feel good again.

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lizard00 Enthusiast
lizard00
Posted

I completely understand. For a while I thought that the gluten-free diet worked only because I wanted it to. And what if I was just crazy? I knew there was something wrong with me, too, but all my tests were normal also.

But I kept getting better and better. And I finally realized (after a few intentional glutenings) that I really had found the answer. And one day a doctor would listen. I honestly didn't think it would be so soon.

Trust your gut (pun intended :lol: ). We do know our bodies better than anyone else, including any specialist. They have the book smarts (sometimes...) and we have the knowledge of our bodies. So, if you believe that Celiac is your answer, and your belief is founded on improvement on the diet, then stick to it. If nothing else, you'll feel better. And eventually you'll find the right doctor. I told my story to quite a few before one finally accepted that I had figured this out and that I was right.

KristaleeJane Contributor
KristaleeJane
Posted

Have you ever had a biopsy?? That would be the real test to get done, if your not digesting your food properly and you have had blood work already. The only crappy thing is you have to continue eating gluten until the biopsy.

Good Luck

KM

Juliebove Rising Star
Juliebove
Posted

I know what you mean. I spent my whole life sick to my stomach and just thought this was normal for everyone. Then at age 46 I was diagnosed with food allergies. Not long after that, I was diagnosed with acid reflux and gastroparesis. Now I am rarely sick to my stomach. And no more sinus and ear infections. I used to keep a box of Kleenex in every room in the house, also in my car, and had to keep about a dozen extra boxes around because I went through them so quickly. Now I only have to buy them if we have a cold, or for a couple of weeks during the start of allergy season.

LuvMoosic4life Collaborator
LuvMoosic4life
Posted

YEP!!. same here. I feel like I am going crazy sometimes! I am self diagnosed and havent even talked to any doctor about it b/c I know they wont really do anything anyways. I told them in the past about my digestive problems but they made up some wierd reason for it- like at 17 I told my doc I have really bad heartburn after lunch everyday at school...she said there is no reason to have heart burn at age 17 and said it must be caused from playin my instrument (clarinet). what????????

I have had D and gas my whole life and just thought it was normal because my dad had it really bad also, I grew up with it...then i get to college and realize I was avoiding being social over horrible horrible gas problems/bloating/diarhea..ect.ect..I thought "who does this?" All my other friends seems fine....then someone mentioned gluten to me....so glad they did!!!! but I still question myself sometimes...even though I question myself I don't even desire to pick up anything gluten again! so I know I'm doing the right thing.

BelievinMiracles Explorer
BelievinMiracles
Posted
  • Author
Have you ever had a biopsy?? That would be the real test to get done, if your not digesting your food properly and you have had blood work already. The only crappy thing is you have to continue eating gluten until the biopsy.

Good Luck

KM

I did have an endoscopy and a colonoscopy and they did take a biopsy but I don't know from where. All they told me was that I had a lot of inflammation. I thought it was from my stomach lining but I could be totally wrong.

And thank you all...I don't feel as crazy knowing there are other people like me...

IMWalt Contributor
IMWalt
Posted
I did have an endoscopy and a colonoscopy and they did take a biopsy but I don't know from where. All they told me was that I had a lot of inflammation. I thought it was from my stomach lining but I could be totally wrong.

And thank you all...I don't feel as crazy knowing there are other people like me...

Yep. Don't feel bad. I spent years thinking it was normal to have cramps, gas, D until my daughter was diagnosed with celiac disease and I started researching it. Since going gluten-free, I am amazed that it took me so long. Years ago I told my doc I had bad cramps and gas, and he just said "Hmmmmm". My blood and biopsy were negative as well, but I have no doubt. I have "tested" myself a number of times by eating gluten, and the result is always the same. As long as I eat gluten-free, all is well. Good luck!

Walt

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Ursa Major Collaborator
Ursa Major
Posted
I did have an endoscopy and a colonoscopy and they did take a biopsy but I don't know from where. All they told me was that I had a lot of inflammation. I thought it was from my stomach lining but I could be totally wrong.

So, what was the explanation they gave you for the inflammation? Because something obviously caused it! And the likely culprit is gluten, of course.

I am glad you are starting to feel better. Don't let anybody tell you its all in your head, we've all heard that and they are WRONG in saying that!

There are so many ignorant, arrogant doctors in this world, its pathetic. I've pretty much given up on the bunch of them, except my chiropractor and naturopathic doctor.

BelievinMiracles Explorer
BelievinMiracles
Posted
  • Author
So, what was the explanation they gave you for the inflammation? Because something obviously caused it! And the likely culprit is gluten, of course.

I am glad you are starting to feel better. Don't let anybody tell you its all in your head, we've all heard that and they are WRONG in saying that!

There are so many ignorant, arrogant doctors in this world, its pathetic. I've pretty much given up on the bunch of them, except my chiropractor and naturopathic doctor.

They didn't give me any explanation! I don't get how they could've tested me for celiac if they didn't take a biopsy from my intestines. Unless I'm wrong, but they might've missed it, especially if it was the beginning part of the disease right? And my blood tests...I read somewhere that it takes about 2 weeks to read them. I don't know if that's right or wrong but they had mine done in 4/5 days and I think they took only one test. I requested them to send me the tests they took and the results. I'm pretty sure I'm not a celiac but I want to make sure I'm not one, because I don't want to hurt myself any more than I have if I want a cookie here and there, you know?

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