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Member Since 28 Apr 2012
Offline Last Active May 05 2012 04:01 PM

Topics I've Started

My Celiac Life Story.

04 May 2012 - 02:36 PM

Welcome. I am glad you have found relief. As long as you do not need the reassurance of a dr to tell you what you already know, I see no need for testing. Remember too, the vast majority who are gluten intolerant will not be dx as celiac, for various reasons, so there is no guarantee a test would be psotive for you. Gluten intolerance is every bit as real as celiac, and should be viewed as seriously. Clearly, you don't tolerate gluten. I hope knowing that will be enough for you to commit to what is a huge lifestyle change. If you take the diet seriously, eventually others will too. However, if you are wishy-washy, or cheat occasionally, or even less than super strict, not only will others dismiss the seriousness of your illness, but they dismiss the seriousness of OUR illness, and it makes it very difficult for us to get "safe" food at restaurants, etc. I hope you will stay committed to being well- you will find it really feels quite wonderful! :)

Welcome Pro, I'm not an MD, but I think you can cross off Failure to Thrive....

Welcome Pro. Many of us are self diagnosed due to "failing" the not so perfect celiac testing. Failing a test for celiac doesn't make our symptoms go away though, or our need to eat gluten free.

Lactose intolerance is a common problem for us, especially at the beginning of the diet. But it does go away in time for some. .Whole foods cooked at home are a good way to start the diet.

Since celiac is hereditary it wouldn't be a bad idea to suggest the other family members get tested though. It might also be worthwhile to look at the family history of diseases. People with celiac tend to get other auto-immune disease more often the most people do. So a family history of thyroid problems, arthritis, diabetes etc might be an indicator.

Well, somebody asked if I had made a thread with my own story and I hadn't, so figured I would go ahead and start one. I've been doing a ton of research on this site for the past week or two, and it has been so extremely helpful to me. Self diagnosing here, but I believe I have celiac disease. I've never noticed major problems with eating anything gluten before, so it is a pretty big surprise to me, but it makes sense that the stress of my wedding and being drug all over Disney World is the reason that my symptoms were exacerbated.

"Experts think that surgery, pregnancy, childbirth, a viral infection or severe emotional stress may trigger the beginning of the disease in people who are genetically prone to it."

As of this post I am 22 years old, 5'5, and 160 lbs (about 30 lbs more than normal). Let's begin with a list of symptoms I have that I believe tie into celiac.

Bloating / Gas, Diarrhea
Itchy Skin Rash
Mouth Sores
Joint Pain
Delayed Growth
Poor Weight Gain
Thin Bones
Infertility (have not been tested, but am pretty darn sure)
Discolored Teeth
Short Stature
and Brain Fog
-- I am sure I am missing some things.

At first I thought maybe I was making a big deal out of nothing, surely I don't have celiac, I mean I've eaten gluten my whole life, and surely most of that list can be caused by other things as well......

Then it kept getting worse.

The first thing I remember noticing that made me do research and landed me here because it was abnormal to me was numbness/tingling in one of my hands. As we were driving to Florida I noticed this and it kind of freaked me out a little bit. Then, almost the whole week (my entire honeymoon) I was extremely tired, cranky, and hurt just about all over. The back of my foot, and my wrist were both hurting really bad most of the trip. I had the numbness/tingling in my leg. I was having all kinds of problems every time I ate. I wouldn't be able to finish my meal because I would immediately bloat, lose my appetite, and have to go to the bathroom where I would stay for 30 minutes or so. I thought it had to be the food, but my wife wasn't having any issues at all and we were eating the same things. Then my buddy convinced me I probably just had traveler's stomach or something like that. I'll just add in that I am pretty short, 5'5. I have gained about 20-30 lbs over the past month or two putting me at 160lb - which is pretty strange since I have been pretty skinny my whole life, actually I have always been pretty malnourished and we always thought it was just my metabolism. I usually weigh 120-130. Obesity runs pretty strong in my immediate family as well, so it was even more odd I thought, that I was skinny regardless of what I ate.

Then it got to the point where I wouldn't be able to sleep at night because I would be in so much stomach pain while it "rumbled" away. I would run myself a bath just to try and make it bearable. The morning before we left Disney (shortly after I realized something was very wrong) I decided to have a gluten free breakfast at the same place we ate 90% of the time, just to see what happened. Nothing, no pain at all. I thought, okay, my brain is messing with me now, the bug must be gone or something. At this point I decided I was just going to tough it out so that I could test for celiac. So on the way home we stopped at a chicken place, and I got two chicken legs and a biscuit. Well, needless to say, I didn't make it to the biscuit thankfully. This time it really got me good -- My stomach felt HORRIBLE. I was trying to lay down in the car and take my mind off of it, but it was just too much. I became very nauseous to the point of having my wife pull over and get me pepto bismal. I felt like a little kid when she told me the cashier asked if her little one's tummy hurt (we don't have kids yet for the record). She said "no, my husband, the big one's tummy hurts." lol. Here I am having just got married, and my wife has to go into the store and get me bismal tablets because my tummy hurt... and I couldn't open my eyes while she drove without feeling the need to hurl. I have also noticed that anything dairy has really been messing with me as well, which is also new for me.

So I decided at this point I didn't really have the money for testing to begin with and no health insurance. I thought maybe I had something besides celiac because I get reactions so quickly, but then found on the net that celiacs actually have faster reactions to gluten than intolerant people. So instead of waiting around in pain every time I ate for it to stop, I chose to go Gluten Free. Honestly by the third or fourth day I noticed my back pain was completely gone, i felt confident with way less anxiety than normal, and my face is really clearing up a lot. I am usually broken out all around my mouth and neck and only have maybe 1-2 spots right now that are left and are clearing up. I felt motivated for work, had a rush of energy and cleaned the entire house haha.

Then something happened.... I overlooked a label on some cheddar popcorn (my subconscious (AKA the devil) was telling me "ehh.. you don't have celiac.. you just had a bad run at disney, i'm sure you are better now") that looked fine and dandy except for "Made on a line with wheat and peanut products"- which I went back and found after I spent about an hour in the bathroom at work with my stomach in a vice grip. I have felt brain fog, weak, and tired since, but this was only 2 days ago. I can't wait to see how I feel in a few weeks, or months.

I also think celiac is the reason I did so terrible in school after 4th grade or so and dropped out in the 9th grade. I would be so tired every day and miss the bus or have my parents call because I didn't ever feel energetic enough to do anything there. Then I joined the navy, which lasted a year. My symptoms became much worse in boot camp when I first got there. I had major depression almost the entire time I was on active duty (about 1 year). I had never noticed too much of anxiety problems before, but during/after boot camp I have had nothing but problems with it. So that's why I got discharged, because I was suicidal and more or less crazy by a years time.

Anyway, I am pretty sure I have celiac and don't need a test to tell me so. Obviously eating gluten free is good for me, so whether I have it or not I am not going to pay a doctor to tell me to keep dieting. Everyone out there that doesn't have problems is going to be skeptical, because they can't feel it for themselves. They can call me a hypochondriac or whatever they want, but all I know is gluten free keeps me from hurting. I can only associate gluten products with pain now, and it grosses me out. Just eating that popcorn has made me feel disgusting since, like I ate dirt or something.

I really wanted to say I have a new respect for all celiacs. I never even heard of this before and I now know what pain you go through not only physically, but mentally when you eat gluten. From people's ignorance at restaurants "what do you mean you don't want a bun??", to some doctor's ignorance at hospitals as I have seen a lot of on here. We can't forget the skeptical family and friends that think we are all just complainers.

I will keep you all updated as I continue to eat gluten and dairy free. Thanks for dropping by my thread and I appreciate any kind words in advance.

New, Not Sure If Celiac Or Not.

28 April 2012 - 05:27 PM

Hi everyone, I go by Prohibit on the internet. Fitting since I think my food choices are about to be prohibited. I am 22 years old and have been struggling with anxiety for a few years now. I just got married on April 20th, and we went to Disney World for our honeymoon (we are actually driving back to Oklahoma right now). So here is where my story starts.. we're on our way to our honeymoon, and after a few hours of driving my hand goes completely numb / tingly. I didn't think anything of it of course. So then since day one of being at Disney World I was having some problems when we ate. My stomach would start to hurt really bad (sharp pains), and I'd have to go to the bathroom for a while afterwards. Well.. as the week long honeymoon got closer to end I started to realize this was happening every time I ate. On top of this, I feel very worn out / tired a lot and very early. It's almost as rest does nothing for me. Up until now I just thought maybe I'm a complainer or something. After looking at the symptoms list I feel like someone grabbed the book of my life and copied bits and pieces out of it. I have always had problems gaining weight and have always been pretty small. I am 5'5 and usually weigh 120-130 lbs. Right now I am at 150, feel very bloated, and notice a lot of weight gain around my neck and face. I get bumps under my skin on my neck and face that are like zits/pimples without a head and they eventually just go away. Also have problems with neck rashes when I shave, and have never been able to rid myself of acne. Since this last week I have had foul diarrhea and constipation + gas. Today I haven't eaten anything with gluten and am feeling better. My wrist has been hurting a bit, and the back of my foot. I never could do well in high school, couldn't concentrate so I dropped out and joined the navy to be discharged one year later because of my anxiety. I seriously feel like I'm on an emotional rollercoaster. The past week I've been very irritable after eating and sometimes snapping on my wife when it isn't necessary. I've lost my appetite because I can only associate it with pain. On top of things, I think I might be sterile but not 100% sure. My stomach has also been very "rumbly". I also have some tooth discoloration for most of my life. Is it normal to not have these stomach problems until my 20s? My right hand is tingling now as in typing this.

I wanted to ask you that have been diagnosed if you think there's a good chance I have this or not. I plan to go get tested soon, but don't have insurance so I'm waiting it out.

If I have it, it would explain a ton of things in my life. My wife and I have best friends that are married, and the wife has celiac disease. I never realized how big of a deal it is or what she goes through, and have major respect for all of you. Nobody should go through this.

So, do I continue to eat gluten and feel terrible? My best friend says don't start gluten free diet unless I know I have it, but I don't want to torture myself. I start to hurt before even finishing my meal. At first I thought food poisoning, but wide has had 0 issues and we ate all the same things up until today. I seek your guidance.

Now that all the gruesome details are out of the way. I work as a contractor for oil companies taking pictures of legal documents in courthouses. In my free time I am a web administrator and run a fan based mobile gaming community with over 15,000 members since July 2011. I also am an administrator for the band 311's forums. We have three pomeranians that are very good boys and don't bark all the time. One is black, one brown, and one white. They are too smart for their own good. When you have to put a crate upside down, with the door against the fridge to keep them from letting themselves out, you have a problem lol. Hope you are all having a great evening.


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