Doctors Think I'm Crazy!

[danikali]

Well, I have been to NUMEROUS doctors regarding my health issues: 3 General Practitioners, 1 Gyno, 1 Allergist, 1 Rheum., 1 Urologist- and 1 GI going on another. (All in the past 5 years)

I have pretty much had digestive problems my whole life. When I was a newborn, I couldn't drink any milk (mom's breast milk, no formula, no soy) except rice milk. When I was about 6, for almost a whole year I would wake up every few weeks and have panic attacks/ night sweats/tremors, and my Mom took me to a neurologist but they didn't find anything. They eventually went away.

As I got older, and talked to more people, I learned it wasn't normal to go "number 2" once every 1-2 weeks, and I was constantly bloated. Then in high school, I noticed severe abdominal cramping, like attacks. Also since high school, I have had VERY frequent urination. One time I woke up and my friends and I headed to an amusment park. I didn't drink anything that morning, but I had to stop and go to the bathroom 3 times in one and a half hours, very urgent, and painful until I was able to release it. So, after all of this high school stuff, I went to my GP and he told me I had IBS. NO tests, no GI reference, I was told I just had to live with it and use laxitives. I have tried them all, and even the ones that seemed to work without side efffects, eventually stop working all together!

As college came around, the "IBS" got worse, and I noticed if I had coffee or something carbonated, or milk, even soy, it got worse. ALso, it started alternating with diarrhea, and I had the "night tremors" a few times again as well. I would also get reacurrent back pains, if I hadn't gone in a while, or if it was diareaha, I could feel something like my colon turning until I went to the bathroom. (This still happens now, it just started then)

NOw, starting about a year ago, everything has really gone haywire and seems to keep getting worse. I had an abortion and a VERY STRESSFUL YEAR behind that, from family issues, school, work, and a big move to NYC from Chicago. Anyway, about 3 months after the abortion (I don't really know if this has anything to do with anything), but I went on vactation to Key West and was sick the whole week with diarrhea, about 2-4 times a day, cramps in my lower left side, nausea, and back aches. So, I went home and it didn't go away but kept getting worse, especially the back aches and the bloating and the diarrhea. And my stomach was so big I couldn't put my pants on! (Except sweats) So I went to the doctor, and he took ex-rays and my intestines were inflamed so he dx me with gastroenteritis. I tried to tell him that I always have something kind of like this, but he said it was probably something I ate. I knew it was just the begining.

So, after about another week, it didn't go away (the pains) but I was constipated again. So, my Mom and I went to a health store with naturopathic doctors. I told her my symptoms and she said I could be allergic to casein and gluten and gave me a list of things to try and stay away from. So I took gluten out of my diet (as best as I could) and all dairy. Guess, what? I felt normal again, finally, and I went to the bathroom again, with normal stools.

Anyway, I stayed off of these things for a while, and moved back to NYC in the meantime. But every once in a while, I would get a flare up. Sometimes, I would play with it and eat cookies or something, and I would get horrible gas and back pains and heartburn for a couple days after. But sometimes I wouldn't notice anything that I ate and I would still get the pains. SO.......................I went to an allergist, and she tested me for a bunch of things (on skin tests) and sent my blood in to see if I was intolerant to wheat or lactose intolerant. Both tests came back normal. So, even though I knew how I reacted to cookies, after this I would try and eat bread, and I would usually not get a reaction after it like the cookies. At least not RIGHT after. But eventually, I would feel like complete crap again, an then a new symptom came!

At least 4 times this past summer and fall, and now a litlte bit everyday, I get horrible joint and muscle pains. If I sit too long, my knees hurt. And those 4 times I was talking about, I had to take off days of work (once, a whole week) because my body hurt sooooooooooooooooooooooooooooooo bad!!!!!!!!!!! I couldn't lift my arms up with one flare, another one, it hurt to walk! I also get tingly feelings in my hands and feet, a lot!

So, I recently finished with an RA doctor, who did a bunch of tests, and the only one that came back positive was ANA, which I read could mean nothing at all. My grandma, and 2 aunts have diabetes, and my Mom is borderline. My other Grandma has colitis and my cousin has Crohns disease. (I was checked for diabetes a lot of times, but always came back negative.)

Also, after my vacation, I went to a GI finally and he did an upper GI and a small bowel series and found nothing. I asked him about Celiac Disease and he just told me not to worry about it because the symptoms are constant diarrhea (I have alternating, mostly constipation) and it is usally with people who are of Northern European decent. I am 100% Polish.

Soooo, I went to a homeopathic doctor, who gave me two remedies already and it seemed like they work for a while (a week or two), but then my symptoms come back. (I also was avoiding the "bad foods" still). Then I started reading more about Celiac and found out there is gluten in A LOT more than I thought! I didn't know artifical non-dairy creamer could, or soy sauce!

So I have decided to go back to a GI and tell him I MUST be checked for Celiac. Also, when I went to the allergist, I was on a low, almost no gluten diet, so I didn't know but that could give a false negative. (But like I just said, I was always eating a little bit of some gluten because I didn't know it was in certain things. I knew there was hidden gluten in soup and things like that, but not hamburgers withouth the buns or french fries! Me and my fiance eat out practically every meal!) But one question is, if I was on a low gluten diet, not non-gluten diet, could that also produce a false negative? Or was the test probably right?

Anyway, I went back on every kind of food because I wanted to be tested to know for sure) Every night I go to bed with the WORST heartburn. I also have leg pains and kness pains on and off, and for the past week, the left side of my back hurts and my left side hurts to touch it or lay on it most of the time. Also, I have noticed a lot of black and blue marks on my legs lately and I also (for about a year now), I get these horrible headaches, sometimes worse, but most of the time there, especially eating everything I know affects me. It's not like a normal headache though; if I touch my scalp, or the right side of my head, the left side of my head hurts and sometimes it even goes into my teeth! What is this? ALso, I seem to get infections, like colds, more frequently too. My blood has been checked a million times by my GP's and there is no HIV or whatever else they test for. It always comes back negative.

Anyway, can someone please tell me what they think might be going on? I think, and have thought for a while now, it all comes down to my digestive tract, and now that I am learning more about Celiac, it seems like I could have that, right? Most doctors these days look at me and I feel like they think I am crazy! And when they don't find anything, they just leave it as, "we didn't find anything" and I'm like, well what next??? There is SOMETHING going on with me, I'm not making it up! I want an answer. Could it really be stress causing ALL OF THIS????? Even though these days, the only stress in my life is due to always being sick! Does this sound like Celiac Disease to anyone else???

[danikali]

I also want to add then a lot of the time, I get floating stools, and noticed that is a sign of malnutrition and Celiac Disease. I told my fiance about it the other day and he thought it was weird. I never knew that could mean anything before, and I get that a lot! Sometimes in the middle of a bout of diarrhea, and sometimes, when I don't go at all for like a week, that is the only thing that will come out! Also, could chronic constipation be a sign of malnutrition?

[elonwy]

Your GI is wrong about celiac disease symptoms and background. They did the same crap to me. I had to lie about family history to get my blood test. I also pigged out on gluten ( knowing that I wouldn't be able to after, cause I knew it would come back positive) the two weeks before my blood test. Was sick as a dog the whole time, but got in everything I was gonna miss, and got a positive.

If he argues, tell him a cousin came up positive, thats what I did. The funny part is, thats true now.

Elonwy

I also had non-classic symptoms, very rarely had D, mostly had really bad C, and was told it was stress and IBS, repeatedly. Man, doctors really get my goat sometimes.

[jrom987]

I also want to add then a lot of the time, I get floating stools, and noticed that is a sign of malnutrition and Celiac Disease. I told my fiance about it the other day and he thought it was weird. I never knew that could mean anything before, and I get that a lot! Sometimes in the middle of a bout of diarrhea, and sometimes, when I don't go at all for like a week, that is the only thing that will come out! Also, could chronic constipation be a sign of malnutrition?

<{POST_SNAPBACK}>

Danikali,

I have to say that I thought I was reading my own story! I have been suffering for 12 or more years. In fact, when I think back, I have had symptoms my entire life. I, too, saw so many specialists (several GI docs). I had at least 10 endoscopies trhroughout my life (never a biopsy until last month), every test imaginable and then some. I was told I had everything from IBS to Fibromyalgia to Lupus to Chronic Pain Syndrome. I have had 9 surgeries in the past 12 years for carpal tunnel, elbow and torn rotator cuff in my shoulder. (maybe related to celiac disease??) I have so many symptoms, as with you.

Yoou might want to try what elonwy suggested and eat all the gluten you can, get tested, have your biospy and then start your new life. I am not sure I could go through all that pain when is sure sounds like celiac disease to me. I would probably just charge ahead with the gluten-free life and end the pain cycle. If I had a clue about this 10 years ago, I would have given up my bread and pasta in a heartbeat! I have been to the emergency room too many times to count.

I am on my third week of the gluten-free diet and my headaches and backaches are pretty much gone. Same with the tummy problems and heartburn. Just waiting for my energy to come back, leg pains and other stuff to go away, and villi to repair themselves.

Good luck!

Jo Ann

[danikali]

Thank you sooooo much for replying to me! Just reading this makes me want to cry because no one knows anything about Celiac Disease in my life, and as I tell them about it, I can tell they pity me but don't know anything to help me confirm it (at least put my mind at ease until I get the whole testing thing done with). So thank you!

What specific symptoms of mine have both of you had?

And I know what you mean about pigging out on gluten. This whole week I'm living on pizza and cookies and sandwhiches with REAL bread. That is the good part about the this whole thing, except on the other hand I feel like I'm killing myself!

But regarding the test I took at the allergist. Do you think it came back negative because I was on an almost complete free gluten diet? Or do you think eating a little here and there would still make it come up positive if I was positive?

[darkangel]

But regarding the test I took at the allergist. Do you think it came back negative because I was on an almost complete free gluten diet? Or do you think eating a little here and there would still make it come up positive if I was positive?

<{POST_SNAPBACK}>

Ultimately, you've got to educate yourself, take responsibility for your health and LISTEN to your body. I spent a ton of money on the Elisa allergy/sensitivity test and showed I was only reactive to paprika and some obscure mold. C'mon.

By all means, insist on the celiac blood tests. I had to ask my doctor for it. I've seen six different GIs and none of them tested me. Like you, I've been suffering off and on for years. I want some answers and I'm sure you do, too.

I wouldn't advise going hog wild with the cookies and pizza... it's only going to make you sicker and more miserable. Heaven knows there are enough hidden sources of gluten, you can start cleaning up your diet and learning what it takes to be gluten-free while you're getting your tests done. And if you notice you're starting to feel better, you'll know you're on the right track.

[elonwy]

If your gluten intake was really low, your test could come back negative. Heck sometimes it can be pretty high and still come back negative. Other people on here are a bit more informed on this subject though.

In regards to symptoms, I had the panic attacks, the night sweats and tremors off and on.

I had bouts where I wouldn't go to the bathroom for a week then would go three times a day.

I would pee constantly. ( this is still kinda happening, it may be unrelated, or take a while to go away).

I had horrible muscle pain, cramps, leg tremors, that thing where you can't sit still and your legs jerk, really bad joint pain, migraines, light sensitivity, night blindness (this is a celiac disease Symptom!!), and constant low level nausea. Also BAD insomnia which is almost completely gone.

I also had the bloated stomach thing, where I would look pregnant.

High volume stools, floaty stools, etc, etc.

If taking gluten out makes you feel better......

Elonwy

[danikali]

Wow! All of the symptoms you listed are completely me! I have horrible insomnia, also, I get up to go to the bathroom A LOT at night, and that restless leg thing you were talking about was my first muscle problem. Most of the time, that also keeps me up at night. I lay in bed, exhausted, and my leg (usually my left, latley my right) feels nervous or something! And my stomach; yes, I look like I am pregnant I get so bloated! Especially after I eat pasta.

So I don't need to pig out on gluten to get a positive test? From everything I read, I feel like these tests don't always pick everyone up with celiac disease anyway. It's so scary. I feel like they should go straight to the biopsy!

My GI appointment is in 2 weeks. Do they usually do the blood test in the doctors office? Or do you have to go to a hospital on another day for that? I really hope that I am diagnosed with this; not only because I will finally have an answer and can begin my diet KNOWING eventually I'll be all better. I am going to go gluten free again even if I don't get a positive test, but it would put my mind more at ease knowing it's not something else when I get a flare up. That was my problem last time. I would not eat any gluten, and feel better, and then BOOM! I would be right back to feeling like an 90 year old woman! (I'm only 21!) Plus, I would like to call my old doctors and educate them on celiac disease for the sake of their new patients they decide to diagnose IBS!

[ravenwoodglass]

So I took gluten out of my diet (as best as I could) and all dairy. Guess, what? I felt normal again, finally, and I went to the bathroom again, with normal stools.

<{POST_SNAPBACK}>

Your body has already given you the answer to whether you are celiac or not. Go back to gluten-free and CF. After you have been feeling great for awhile add dairy back in and see if you can tolerate it. You already know your at least gluten intolerant. Stay away form it no matter what the blood tests say.