Is This A Real Possibility For Me?

[brie1120]

Hi! I'm getting an endoscopy/colonoscopy in September with a biopsy and all that jazz, so I guess it's only a matter of time before I find out for sure. But until then, I'm a bit of a hypochondriac so I wanted to just run by what I'm feeling against what you've all experienced. My GI doc has brought up celiac as a possibility on more than one occasion, but he's also mentioned IBS, Crohn's, or an ulcer as well.

It all started around November-ish. I would wake up in the middle of the night or in the morning with a terrible stomach ache. Not bad enough to go to the hospital or keep me from doing anything, but it did disrupt my sleeping enough for me to go to my family doc. She pressed around and told me to stay away from things like tomatoes and onions. I did that and it helped a bit, but the pain was still there very faintly. Then in January I had a big falling out with my boss which continued until around mid-March and the pain would be back intermittently. I thought it was just stress.

In late April it started bothering me again, and my family doc couldn't see me. I had actually stayed home from work to see her, but there were no appointments. Pissed off, I made an appointment with my mom's gastro doc who could see me the next day. I described everything to him and he asked me to go for blood tests including something involving gluten, but he thought it was IBS. It took awhile to coordinate my schedule, but I went for the tests in May and had a follow up appt scheduled for last week. Had to cancel because of a work commitment,but asked when I canceled if the blood tests showed anything. The nurse said the doc would check and call me back. While I was at work, the doc called and spoke with my mother (I gave permission) saying that he HAD to see me the next day since the tests came back that I was anemic with a something or other registering a 7 that was supposed to be a 14. (I don't know much about the terms, I'm sorry.) He also said he wanted me to have a colonoscopy, so of course I thought "well, darn, I have colon cancer."

When I went in the next day he told me not to worry about that, but he did want to check for celiac, crohn's, an ulcer, ibs, or maybe just inflammation or heavy menstruation. I'm very nervous about the whole thing, but if I can figure out what the problem is, that's great!

Since Celiac kept coming up, I did some research on it. My parents don't think that's it because (a) we're Italian and I've eaten bread and pasta my entire life without any problems and ( I didn't have a problem at all until a little less than a year ago. BUT, I did look on celiac.com (I know, I know), and I think I do fit a lot of the symptoms that are mentioned:

Abdominal cramps, gas and bloating - I never used to get this, but I feel if I eat lunch, I'm too bloated and gross feeling for dinner. And I have never had so much gas in my life!

Anemia - see above

Epitasis (nose bleeding) - about 2 years ago I started getting nose bleeds all the time to the point where as gross as it is, I have scabs that I keep picking out (in private) because they're blocking my breathing. I thought it was from doing a lot of plane travel at the time, but I would think it would have gone away by now.

Fatigue or general weakness - I have been very fatigued lately. Last weekend in fact, I went to bed at 10pm in the evening and woke at 4pm the next afternoon. That was the worst, but I basically have been sleeping my weekends away.

Flatulence - yep

Fluid retention - lots of bloating

Foul-smelling or grayish stools that are often fatty or oily - Foul smelling sometimes, but not often. However, I never thought much of it, but I do often have pieces of what I guess might have been fat stuck to the outside.

Gastrointestinal symptoms - hell yea

Iron deficiency anemia - I've been put on iron pills. I've also had very heavy menstruations to the point where I can't go anywhere for a few days.

Panic Attacks - I had my first every panic attack in January. I thought it was in conjunction with trouble at work, but I'm usually a pretty strong person who doesn't let things like that bother me. I almost had another one in March, but was able to stave it off. My coworkers thought they were going to have to take me to the hospital the one time though.

Peripheral neuropathy (nerve damage)

Voracious appetite - every once in a while, definitely.

Obesity - I'm about 60 lbs overweight and had been tested before for thyroid since I don't eat as much as my body would suggest I do. (Not that I should be a twig, but not 60 lbs.)

Now the blood test I had in May did test for celiac and came back inconclusive. The doc said this was normal, so he wants to biopsy just to make sure. I don't want it to be celiac, but a smallish part of me hopes it is so that I can feel like myself again.

Am I crazy?

[mushroom]

Hi! I'm getting an endoscopy/colonoscopy in September with a biopsy and all that jazz, so I guess it's only a matter of time before I find out for sure. But until then, I'm a bit of a hypochondriac so I wanted to just run by what I'm feeling against what you've all experienced. My GI doc has brought up celiac as a possibility on more than one occasion, but he's also mentioned IBS, Crohn's, or an ulcer as well.

It all started around November-ish. I would wake up in the middle of the night or in the morning with a terrible stomach ache. Not bad enough to go to the hospital or keep me from doing anything, but it did disrupt my sleeping enough for me to go to my family doc. She pressed around and told me to stay away from things like tomatoes and onions. I did that and it helped a bit, but the pain was still there very faintly. Then in January I had a big falling out with my boss which continued until around mid-March and the pain would be back intermittently. I thought it was just stress.

In late April it started bothering me again, and my family doc couldn't see me. I had actually stayed home from work to see her, but there were no appointments. Pissed off, I made an appointment with my mom's gastro doc who could see me the next day. I described everything to him and he asked me to go for blood tests including something involving gluten, but he thought it was IBS. It took awhile to coordinate my schedule, but I went for the tests in May and had a follow up appt scheduled for last week. Had to cancel because of a work commitment,but asked when I canceled if the blood tests showed anything. The nurse said the doc would check and call me back. While I was at work, the doc called and spoke with my mother (I gave permission) saying that he HAD to see me the next day since the tests came back that I was anemic with a something or other registering a 7 that was supposed to be a 14. (I don't know much about the terms, I'm sorry.) He also said he wanted me to have a colonoscopy, so of course I thought "well, darn, I have colon cancer."

When I went in the next day he told me not to worry about that, but he did want to check for celiac, crohn's, an ulcer, ibs, or maybe just inflammation or heavy menstruation. I'm very nervous about the whole thing, but if I can figure out what the problem is, that's great!

Since Celiac kept coming up, I did some research on it. My parents don't think that's it because (a) we're Italian and I've eaten bread and pasta my entire life without any problems and ( I didn't have a problem at all until a little less than a year ago. BUT, I did look on celiac.com (I know, I know), and I think I do fit a lot of the symptoms that are mentioned:

Abdominal cramps, gas and bloating - I never used to get this, but I feel if I eat lunch, I'm too bloated and gross feeling for dinner. And I have never had so much gas in my life!

Anemia - see above

Epitasis (nose bleeding) - about 2 years ago I started getting nose bleeds all the time to the point where as gross as it is, I have scabs that I keep picking out (in private) because they're blocking my breathing. I thought it was from doing a lot of plane travel at the time, but I would think it would have gone away by now.

Fatigue or general weakness - I have been very fatigued lately. Last weekend in fact, I went to bed at 10pm in the evening and woke at 4pm the next afternoon. That was the worst, but I basically have been sleeping my weekends away.

Flatulence - yep

Fluid retention - lots of bloating

Foul-smelling or grayish stools that are often fatty or oily - Foul smelling sometimes, but not often. However, I never thought much of it, but I do often have pieces of what I guess might have been fat stuck to the outside.

Gastrointestinal symptoms - hell yea

Iron deficiency anemia - I've been put on iron pills. I've also had very heavy menstruations to the point where I can't go anywhere for a few days.

Panic Attacks - I had my first every panic attack in January. I thought it was in conjunction with trouble at work, but I'm usually a pretty strong person who doesn't let things like that bother me. I almost had another one in March, but was able to stave it off. My coworkers thought they were going to have to take me to the hospital the one time though.

Peripheral neuropathy (nerve damage)

Voracious appetite - every once in a while, definitely.

Obesity - I'm about 60 lbs overweight and had been tested before for thyroid since I don't eat as much as my body would suggest I do. (Not that I should be a twig, but not 60 lbs.)

Now the blood test I had in May did test for celiac and came back inconclusive. The doc said this was normal, so he wants to biopsy just to make sure. I don't want it to be celiac, but a smallish part of me hopes it is so that I can feel like myself again.

Am I crazy?

First of all, welcome to the forum.

No, you are definitely not crazy; in fact it sounds like you are where you belong, and we consider this to be the "sane" asylum.

If you are not celiac, you definitely sound gluten intolerant, which in most respects is the same thing except you don't show positive on the celiac testing. But that testing also has at least a 20% error rate, both on blood and biopsy, so even the testing may not give you a definitive answer, I'm sorry to say. At that point, your best course of action would be a two-three month trial of eating gluten free. This should give you your answer.

Your symptoms are all pretty classic. And if you were in Italy they would have tested you at least twice before now because there is a very high incidence of celiac disease in Italy and they try to get it early. Just because you have eaten things in the past without problem does not mean that you do not react to them now. Celiac disease is genetically based, but having the gene does not automatically make you celiac. There has to be a trigger to set it in motion - physical or mental stress, childbirth for some women, infectious disease - there are many potential triggers.

Stay in touch with us and let us know how things work out and come back and ask any other questions you may have.

[torimuse]

Yes, welcome to the misfits club. Most of us had doctors that refused to test us at one point or another, so props to your doc for testing you!!

You're definitely not crazy. I never wanted this. Nor did any single person on this forum. Far as I can tell, though, we're every single one of us happier knowing what it is that causes us to be sick. We like to know, so we can fix it, but we hate being sick in the first place.

I know I can't count how many times I've gone to the doctor for this or that, praying it's [insert big condition here] because I'm sick of feeling sick and I want to know what it is so that I can make it go away. Now I know what all of them was caused by. My suggestion is that once you get the biopsy done, don't even wait for the results. Go gluten free and see if that makes a difference. The elimination diet is the ultimate test. If you feel bad after eating it, it's bad for you. Don't eat it.

I'm also one of those people who haven't had symptoms for most of their lives. I'm 99.99% sure that my symptoms started from an infection I had a year and a half ago. I'm lucky, I caught it early, and on my own as well. Very few people on here can say that. Sounds like you're catching it early too, and with your doctor's help at that. Good. You won't have all the other issues that come with prolonged damage to your body. You get to be lucky with me.

[brie1120]

Thanks everyone, I'm glad I seem to be on the right track. I never thought I'd say it, but I hope my test does come back so conclusive that there's no question. As much as it would suck, I would be so so happy because I would know what's wrong. No more running home from the mall with severe gas or waking up with a tummy ache! (And if I'm lucky, maybe I'd lose some weight) I just wish my test was sooner than 2 months from now, but that was the first appointment I could get. I've read around the forum, and it seems like I shouldn't change my diet until after the biopsy - is that right?

I was reading another topic about celiac-onset lactose intolerance. I think I could have that too. I had the worst bloating and gas this afternoon, but this morning I just had a craving for milk - and drank about 4 cups. (I'm not normally a milk drinker). I've also been complaining about a pain in my knee for about three weeks and have a lot of mild food allergies (such as peanuts, but not so bad as to close up my throat, and garlic which just makes me so so sick to my stomach for days. Haven't tested out soy though.) Of course once I read things, I am the type who imagines I have all sorts of symptoms and scary diseases so I really should stop. I'm no doctor!

At any rate, things are starting to make some sense, and I hope for my sanity I get an answer. It's amazing how quickly things deteriorated for me!

I'll keep y'all posted (although 2 months is a LONG ways away!)