I Can't Live Like This!

[JenKuz]

I don't know if I can take this for another month before my biopsy. Every time I eat I want to throw up. My guts feel like someone is squeezing jello through them; sort of gurgly and painful and full of pressure. I want to cry every time I eat, but as soon as the nausea passes, I'm starving again, I'm looking for something else to put in my face. I don't know if I'm losing much weight, but my friends are telling me I'm looking skinny lately. I don't think I can do this for another month. I want to cry. I just want to cry. What do I do?

[Guest nini]

refresh my memory, did you try the gluten-free diet before and are doing gluten for biopsy? if so, I think you have your answer and don't need the biopsy.

[CarlaB]

refresh my memory, did you try the gluten-free diet before and are doing gluten for biopsy? if so, I think you have your answer and don't need the biopsy.

I agree. I mean, the way you're feeling, will you ever eat it again?

[JenKuz]

I agree. I mean, the way you're feeling, will you ever eat it again?

Yes, half of me agrees with you both. The problem is that I've travelled in a few developing countries and there may be something more serious wrong with me; the blood and stool tests seem to have ruled out anything infectious, plus I've taken every anti-parasitic and anti-biotic known to man. So I should go through the full diagnostic procedure just to be on the safe side. So half of me thinks, if I have to go through the biopsy anyway, and it is celiac, then I want to make sure they find it so I don't find myself wondering in future. In the meantime I want to curl up on my sofa and never leave it again. Unfortunately, I have a qualifying exam scheduled before the biopsy. Its of the super-intense, can't-get-a-PhD-without-it variety, and I can't study sick. I'm trying so hard and I have so much to do. I can't do it like this, but I don't know if I should jeopardize my diagnosis, in case it's something more severe. If they can rule out celiac *in spite* of a pre-diagnosis heavy-gluten diet, then it means they should keep looking. If I'm lax, and then it doesn't seem to be celiac, it will simply mean nothing. Hence my indecision.

Do any of you have any tips for managing symptoms in the pre-gluten state?

Also, especially the ladies on the board, did any of you feel constantly on the verge of tears before going gluten free? I know a big part of it is my discomfort and despair, but I think it's also emotional, and I've never been like that before. Just wondering if it might be related. I need to go throw up now. Excuse me.....

[carynanne]

Unfortunately, I have a qualifying exam scheduled before the biopsy. Its of the super-intense, can't-get-a-PhD-without-it variety, and I can't study sick. I'm trying so hard and I have so much to do. I can't do it like this, but I don't know if I should jeopardize my diagnosis, in case it's something more severe. If they can rule out celiac *in spite* of a pre-diagnosis heavy-gluten diet, then it means they should keep looking. If I'm lax, and then it doesn't seem to be celiac, it will simply mean nothing. Hence my indecision.

Do any of you have any tips for managing symptoms in the pre-gluten state?

How close are your exams to your biopsy? Could you go gluten-free until the exams, then get back on gluten, or are they within days of each other? Did the doctor tell you that you had to stay on gluten for the entire month?

[CarlaB]

Can't they rule out those other problems without doing the celiac testing?

Were you gluten-free before with good results?

There's really nothing you can do except keep yourself hydrated. Gluten challenges seem silly in a way because we are purposefully making ourselves ill. If you were gluten-free before, you will need 3-4 months of 4 slices of bread per day for the damage to show.

[JenKuz]

Can't they rule out those other problems without doing the celiac testing?

Were you gluten-free before with good results?

There's really nothing you can do except keep yourself hydrated. Gluten challenges seem silly in a way because we are purposefully making ourselves ill. If you were gluten-free before, you will need 3-4 months of 4 slices of bread per day for the damage to show.

Thanks for that information. I actually was gluten free before, for four or five months. I didn't think I had celiac at the time, though; I thought I had tropical sprue associated with giardiasis. I did the specific carbohydrate diet for the four or five months because of that.

I went off the diet only because I was doing a training program at Duke, and was eating dorm food for three weeks. There was no way to follow the diet, and no way to prepare my own foods, so I figured my damage was probably healed and I could go back to eating normally.

As soo as I did, I felt sicker than every. Within days. I'd cheated on the SCD before with ice cream and other sugars, but never had any problems with that, so it surprised me when I had terrible D after eating some croutons. That's when I started putting it together, and began to suspect celiac disease.

I added gluten back two months before the blood tests (negative) were done. I didn't realize I had to be on it for so long (and eat so much) in order for damage to show.

My exam will end the day before I go in for the biopsy. Problem being that I'm leaving for a master's cert. program in italy days after the colonoscopy, which is four days after the biopsy. So, things are getting kind of crammed into the schedule. There's zero flexibility. My advisor is being sympathetic, but she's really pressuring me to get the exam done before the biopsy. I've told her how sick I feel, but I don't tend to let it show--after all, I've been dealing with it for a year and a half--so it seems sometimes people think I'm exagerrating it. The only people who believe me are my parents, and the friends who've spent enough time with me to see the blood run from my face as a make a mad dash for the toilet, or squirm around in my seat trying to find a way for the gas bloating not to hurt.

I wanted to ask the doctor about all the stuff with the testing, but he didn't bother to call me himself with my test results. He had his assistant call me....I posted a transcript of that little exchange in the doctor's forum.

I guess I should call them and demand to talk with the doc, and see what he has to say.

Or the other thing I was thinking would be to take the enterolab tests now, and if they are positive, then I'll take that as my definitive diagnosis, go off gluten, and then whether the biopsy registers damage or not, as long as it doesn't register anything wrong, I'll consider my problem solved.

The problem is, I've read the enterolab can take three weeks to get results back, is it always that long, or is that the maximum?

I'm just at my wits' end. I can't do this anymore.

[Ursa Major]

Jen, after everything you said it seems insane for you to stay on a gluten diet. Of course your bloodwork was negative, you hadn't been consuming enough gluten to make it positive. And really, for some people it takes a YEAR before there is enough damage again to have a positive biopsy. It is very likely that your biopsy will be negative anyway, after torturing yourself all this time! And it will be totally useless and meaningless, as it would likely be a false negative.

You don't have to consume gluten for the enterolab tests (it takes about a year off gluten for their tests to be inconclusive). If you go that route (which I recommend), you could stop eating gluten RIGHT NOW, order the tests and be done with all this. Obviously you have a huge problem with gluten. You feel fine without it, and are awfully sick with it. At the least you're gluten intolerant. So, it would be an enormous surprise if the enterolab tests would show otherwise.

And three weeks seems to be the maximum time anybody ever waited for their results, I think that two weeks is about average.

[CarlaB]

I think it's obvious, and will be even more so when you get better getting off gluten! I would go with Enterolab if you need proof beyond dietary response. You have other things to worry about than eating gluten and sitting around sick all the time. The longer a celiac stays on gluten, the more of a chance of other problems coming along. Plus, you want to start the healing process. If you had something else wrong -- bacterial or parasitic -- you will still have d whether you are eating gluten or not!!

I don't understand why your endoscopy and colonoscopy aren't the same day, usually they are. You could keep that appt. just to be sure you don't have any other issues, but realize that because you are gluten-free the tests will more than likely be negative.

[Nancym]

Gotta say I agree with Ursula. If your symptoms don't resolve goign gluten free you can pursue more testing, but it kind of sounds like they do.

[JenKuz]

Thanks for the advice, guys. I'm leaning in that direction.

BTW, NancyM, I love the paleolithic diet. One of my committee members is one of the people who originally came up with the idea of returning to a caveman diet. M.J. Konner is the name. Co-wrote The Paleolithic Prescription, which is worth reading if you haven't yet.

[aikiducky]

I gotta agree with the others.

Plus, honey, I don't think you're thinking straight. Gluten can do that to you.

You can always be tested for all the parasites and tropical diseases in the world if you wish, even if you are gluten free, can't you? Not going gluten free ONLY because you want to make sure it isn't something else honestly doesn't make any sense. Well it makes sense in a denial kinda way...

Also, you said:

"If they can rule out celiac *in spite* of a pre-diagnosis heavy-gluten diet, then it means they should keep looking. "

Here's the rub - there's no way to really rule out celiac. It's always possible that a biopsy doesn't show damage, because

1. the samples taken miss the damage because it's patchy

2. the disease is in it's early stages and damage hasn't developed yet, but will later (this can be the case despite severe symptoms!)

3. the lab isn't experienced enough in looking at the samples and misinterpretes

4. you're one of the people who won't develop total villous atrophy, but gets nasty symptoms anyway

Basically, you might get lucky and have a positive biopsy, which means you need to go gluten free anyway, or you might have a non-positive biopsy that leaves you none the wiser.

Now if you're hell bent on having an official diagnosis, you just have to accept that studying is going to be difficult. I would never tell anyone not to have the whole works, blood tests and biopsy and all, if you think you'll need it, because those can't be done after going gluten free. But you have to consider why you might need an official diagnosis, and whether or not it's more important to you than passing your exams. It might be, I don't know.

All that said... if you decide that you need to go through with it: we'll be here! Come and rant all you need to, there are others here who have gone through a gluten challenge and can surely sympathise.

In the meanwhile... I find that extra vit. B's (preferably a combination of them) help with the emotional stuff.

Hugs

Pauliina

[JenKuz]

I gotta agree with the others.

Plus, honey, I don't think you're thinking straight. Gluten can do that to you.

You can always be tested for all the parasites and tropical diseases in the world if you wish, even if you are gluten free, can't you? Not going gluten free ONLY because you want to make sure it isn't something else honestly doesn't make any sense. Well it makes sense in a denial kinda way...

Also, you said:

"If they can rule out celiac *in spite* of a pre-diagnosis heavy-gluten diet, then it means they should keep looking. "

Here's the rub - there's no way to really rule out celiac. It's always possible that a biopsy doesn't show damage, because

1. the samples taken miss the damage because it's patchy

2. the disease is in it's early stages and damage hasn't developed yet, but will later (this can be the case despite severe symptoms!)

3. the lab isn't experienced enough in looking at the samples and misinterpretes

4. you're one of the people who won't develop total villous atrophy, but gets nasty symptoms anyway

Basically, you might get lucky and have a positive biopsy, which means you need to go gluten free anyway, or you might have a non-positive biopsy that leaves you none the wiser.

Now if you're hell bent on having an official diagnosis, you just have to accept that studying is going to be difficult. I would never tell anyone not to have the whole works, blood tests and biopsy and all, if you think you'll need it, because those can't be done after going gluten free. But you have to consider why you might need an official diagnosis, and whether or not it's more important to you than passing your exams. It might be, I don't know.

In the meanwhile... I find that extra vit. B's (preferably a combination of them) help with the emotional stuff.

Hugs

Pauliina

You're totally right.

Actually, today I haven't been able to leave my toilet. I found myself looking up symptoms of E. coli, because a restaurant served me a salad with what could have been spinach in it yesterday. And then I realized that this is the diarrhea and gas I have every couple weeks, with something almost as bad in between. And there have been no cases in Georgia. And I must actually be in denial. Because, seriously, it ain't E. coli. It's me.

I don't care about the official diagnosis, for my own part, but going truly gluten free puts a big demand on family and other assorted loved ones. I'd hate to go to such extremes without knowing for sure whether it were necessary. But if I cut it out, and I improve, then I'll know.

I have a very sympathetic friend who is a second year med student. We went for a walk in the woods today--I had to bring wet naps and tp along with me, because of the D--and my friend got so angry on my behalf, and she said,

"Would you tell an alcoholic with cirrhosis, 'Now, add alcohol back to your diet for a little while, and we'll see if your liver gets worse again.' Or a hypertensive, okay, stop taking your blood pressure medication, and if you have a heart attack, then we'll know for certain what caused it. Sure, a bit of your heart will be damaged beyond repair, but we'll know what caused it, and that's really the main thing.'" I thought about that, and it seems so far beyond absurd--nobody would say that wasn't malpractice. So why is it okay in this case?

Aargh. I'm doing enterolab this week, and giving up the gluten as soon as I have time to go through my kitchen. And if my biopsy is negative, but my symptoms have gone away, I'll just tell the doc his technique needs works.

[oceangirl]

Jencuz,

Gosh,

I agree with others here- please go off the gluten! Man, do I remember the hellish symptoms you are describing. I am by no means "cured", but when I read what you've written, it makes me remember viscerally the pain, the bloat, the discomfort, the sleepless nights (still a bit of an issue, but better) and ALL the rest of it. It's horrible! My heart goes out to you. My biopsy was negative after 4 months gluten-free (mostly- still some hidden), but THERE IS NO DOUBT IN MY MIND that I cannot consume a grain of the stuff now. There is no point to not going off it now- I suspect you'll have all the answer you need. Get well!

lisa

[Shalia]

"Would you tell an alcoholic with cirrhosis, 'Now, add alcohol back to your diet for a little while, and we'll see if your liver gets worse again.' Or a hypertensive, okay, stop taking your blood pressure medication, and if you have a heart attack, then we'll know for certain what caused it. Sure, a bit of your heart will be damaged beyond repair, but we'll know what caused it, and that's really the main thing.'" I thought about that, and it seems so far beyond absurd--nobody would say that wasn't malpractice. So why is it okay in this case?

That has easily got to be one of the best, most succinct, and most honest explainations of the stupidity of gluten challenges I've ever read.

Your friend is smart.

[JenKuz]

Jencuz,

Gosh,

I agree with others here- please go off the gluten! Man, do I remember the hellish symptoms you are describing. I am by no means "cured", but when I read what you've written, it makes me remember viscerally the pain, the bloat, the discomfort, the sleepless nights (still a bit of an issue, but better) and ALL the rest of it. It's horrible! My heart goes out to you. My biopsy was negative after 4 months gluten-free (mostly- still some hidden), but THERE IS NO DOUBT IN MY MIND that I cannot consume a grain of the stuff now. There is no point to not going off it now- I suspect you'll have all the answer you need. Get well!

lisa

Hi Lisa,

Thanks so much for the sympathy I deglutened the kitchen yesterday and am going gluten-free today. Except my lipsticks. I can't bring myself to get rid of them. Everything else is gone, though.

Your friend is smart.

Yes, she is. She gives me hope for the new generation of doctors

[CarlaB]

Hi Lisa,

Thanks so much for the sympathy I deglutened the kitchen yesterday and am going gluten-free today. Except my lipsticks. I can't bring myself to get rid of them. Everything else is gone, though.

Yes, she is. She gives me hope for the new generation of doctors

You need to check your lipsticks. You can start a new thread about it -- list your brands and ask if anyone knows. It's REALLY important because it's by your mouth!

[Lymetoo]

That has easily got to be one of the best, most succinct, and most honest explainations of the stupidity of gluten challenges I've ever read.

Your friend is smart.

Absolutely!

[Ursa Major]

You need to check your lipsticks. You can start a new thread about it -- list your brands and ask if anyone knows. It's REALLY important because it's by your mouth!

That's right. You absolutely CANNOT help eating some of your lipstick, it's inevitable. You will undoubtedly get glutened by lipstick with gluten in it, and it won't be possible to really get better, unless you replace your gluteny lipsticks with gluten-free ones. You need to go all the way with this gluten-free lifestyle. It's either all or nothing.

Having said that, I am rooting for you! I hope you will start feeling better right away. I know I am unusual, but my D stopped cold the day after I stopped eating gluten. That's what I wish for everybody who starts the gluten-free diet.

[JenKuz]

That's right. You absolutely CANNOT help eating some of your lipstick, it's inevitable. You will undoubtedly get glutened by lipstick with gluten in it, and it won't be possible to really get better, unless you replace your gluteny lipsticks with gluten-free ones. You need to go all the way with this gluten-free lifestyle. It's either all or nothing.

Having said that, I am rooting for you! I hope you will start feeling better right away. I know I am unusual, but my D stopped cold the day after I stopped eating gluten. That's what I wish for everybody who starts the gluten-free diet.

Thanks for the concern, guys I've checked the lipsticks for gluten ingredients; I just meant, the potential for cross-contamination from eating bread and then applying the lipstick. I'll just wipe the tips, cause I love my lipsticks. Vanity may be the end of me one day, but there it is. I am replacing my toothbrush, however. That seems wise.

[oceangirl]

Thanks for the concern, guys I've checked the lipsticks for gluten ingredients; I just meant, the potential for cross-contamination from eating bread and then applying the lipstick. I'll just wipe the tips, cause I love my lipsticks. Vanity may be the end of me one day, but there it is. I am replacing my toothbrush, however. That seems wise.

Jen

If you find that's not enough- Lancome(pricey, but worth it) and Ecco Bella I know are gluten-free. The Lancome line is called "Rouge Absolu". good luck to you again!

lisa

[JenKuz]

Jen

If you find that's not enough- Lancome(pricey, but worth it) and Ecco Bella I know are gluten-free. The Lancome line is called "Rouge Absolu". good luck to you again!

lisa

Woooooohoooooooo!!!!!!!!! All my lipsticks are Lancome. Happy day.

[TriticusToxicum]

That has easily got to be one of the best, most succinct, and most honest explainations of the stupidity of gluten challenges I've ever read.

Your friend is smart.

Isn't "Do no harm" part of the Hippocratic oath? I thought doctors where good with bigs words...maybe not so good with the little ones?