Risk A Gluten-challenge?

[allison]

Hi everyone,

I'm new here. I was sick for three years (mostly extreme exhaustion, stomach pains, occassional diarrhea, dizziness, nausea) and decided to try eliminating gluten after a doctor SUGGESTED it (nobody but nobody could figure out what was wrong). I felt much better about a month after the elimination and have been gluten-free since August 2005. Now (and for the last two weeks) I feel like crap again, but I don't think I have been eating differently than usual (maybe a little less careful due to starting a new job and stress?).

The things is that I have never been positively diagnosed because I was in school/traveling and my insurance didn't cover me where I was. Now I'm in NYC and am having an endoscopy on Monday, but I don't think it will really say anything b/c I am gluten-free and have been for a while. (I had the blood tests for antibodies in July and there wasn't any, but it said on the results that they are inconclusive if the person has not been eating gluten.)

So what I'm wondering is: should I risk a gluten challenge? The problem is that I have a job to deal with--and so if I can't go to work, what am i supposed to do? Not a big deal to go to work when you feel sort of bad, but I've been out all this week because I am so dizzy, and my stomach is really bad (especially in the morning, and also with reflux--I think.)

What do you all thing? Has anyone ventured to do this? I can't get a straight answer from anyone on how much gluten I'd have to eat or how long I'd have to eat it before getting a reaction that would be visible in an endoscopy.

Meanwhile, I've eaten only brown rice, boiled chicken, homemade chicken broth, eggs, and minimal amts of gluten-free bread since Tuesday and don't feel any better. SO DIZZY!

Would love to hear what you think--just reading this board is making me feel less depressed--this has been such a long road!

Allison

[CarlaB]

It's a hard call and a personal decision.

I've read four months, the equivalent of four slices per day. I've also read three months and six months. If gluten disables you, that will be VERY long.

Stress can definately contribute to health problems. Google adrenal fatigue and see if it sounds like what you're suffering. It's related to stress.

Our health can be a real puzzle. I'm still working on my puzzle myself

[Corkdarrr]

As delicious as a gluten challenge sounds some days, I sincerely doubt I would make it.

For me, a postive dietary response was the biggest thing and then I got some testing done through Enterolab just to confirm it for myself.

I've been doing an elimination diet for the past month and feel way better. It's boring and I'm ready to throw a fit if I have to eat stirfry one more night, but obviously something I cut out made me feel a lot better.

Like Carla said, it's a personal decision. But to me, it just wouldn't be worth it.

Courtney

[aikiducky]

How long does your typical gluten reaction last? I ask because mine can sometimes last up to three weeks (not the D necessarily but stuff like bloating, nausea and fatigue). So if you had something a couple weeks ago, maybe ate at a restaurant and got cross contamination on something? It could still explain why you feel bad again right now, but in that case it should pass after a couple more weeks.

I've also heard amounts of time like three months, four or even six, and even then, sometimes people get negative biopsies but feel better gluten free. It's quite a long time to be sick, to confirm something you already know... but it's your decision. I should metion that I don't have an official diagnosis for this precise reason so I'm a bit biased.

Pauliina

[sparkles]

If you have been gluten-free and have been feeling better, I don't think I would risk a gluten challenge. BUT it is a personal decision... I would really consider what the benefit of being glutened on purpose would be! Good luck on your decision.

[Creative-Soul]

Whether or not to do a challenge is a very difficult decision to make... for me, I couldn't afford any "official" testing anyway, so I finally decided to attempt one in July as sort of a definitive "diagnosis" for myself...I had been gluten-free for a while and decided that if I experienced any symptoms that would be enough proof for me! After the first day or so I wanted to DIE. A few days later I found myself at my doctor's office (even though I couldn't afford it!) and we had a long talk. He said to stop the challenge immediately seeing that my symptoms were that severe, and that that was enough proof for him as well! So... that's how I was diagnosed...

I think diet alone is a very valid diagnostic tool... Whatever you decide to do, I wish you all the best. All you can do is to make the correct decision for yourself...

[Guest cassidy]

If you were feeling much better for over a year on the gluten-free diet, then I think that is positive evidence that you need to stay on the diet regardless of what has been going on for the last two weeks.

I can't tell you what has been happening in the last two weeks - you said you may have been less careful. It usually takes me 3 weeks to totally get over a glutening, so even if it happened once, it could still be that. Or, maybe you have another intolerance or some other situaton going on. I just wouldn't think that if the diet made you feel better that it could suddenly not make you feel better anymore. That doesn't make sense to me.

If you have been gluten-free then the biopsy will be negative and I don't see what that will prove. You could always start a gluten challenge and you will probably get very sick and decide to stop doing it. You could always delay the biopsy and see if this temporary problem goes away and then decide what you want to do.

Good luck deciding.

[hineini]

This is a hard one. I tried to go on a gluten-challenge for my blood test because I'd already been gluten-free for 4 months... And I was really excited at the thought of eating all my fave foods again... And BAM, I got so sick I only made it 36 hrs on the challenge! I've been strictly gluten-free since, and have had to accept that this will preclude me from getting a definite diagnosis. I'm learning to live with this, but it's hard. Sometimes it makes me feel a little crazy. I know how sick gluten makes me but I feel that I'm lying when I say "I have celiac disease." My doctors, however, really support me being gluten-free because they've seen how much less sick I am. This really helps.

[ajay]

So what I'm wondering is: should I risk a gluten challenge? The problem is that I have a job to deal with--and so if I can't go to work, what am i supposed to do? Not a big deal to go to work when you feel sort of bad, but I've been out all this week because I am so dizzy, and my stomach is really bad (especially in the morning, and also with reflux--I think.)

Hi Allison,

You can search around the boards a bit about testing, because a lot of people wrestle with it. I think part of the question is, do you personally need an official diagnosis? Some people need to have it medically confirmed, for whatever reasons. And if that's what you need, then that's a valid reason. Some figure if you improve on the diet, what more evidence do you need?

Some notes of caution:

1) A positive result is a positive result, but a negative result is a big question mark. There seem to be a lot of people on the boards who officially tested negative but definitely react to gluten. From what you've said, it sounds to me like it would be in your best interest to live gluten free no matter what you get for test results.

2) In my experience (and others have mentioned it, too) after you have gone gluten-free, you may be even more sensitive to gluten than you were before. It's like now your body has enough strength to really react to it. That may be where you are now-- A new job and stress can distract you enough that some small amount of gluten sneaks in and whammo! I used to get big red hives when I ate wheat. I had an accidental challenge this spring. I got a full-on anaphylactic reaction.

There were times when I wanted to get tested for celiac disease since I do get digestive symptoms as well (they just come later). I still wonder if I'm "really" Celiac, but after that last incident, I am firmly in the "not worth it" camp.

I would say the doctor who suggested eliminating gluten should have tested you then... But so many people have problems getting their doctors to even recognize that there's a problem, so I'm *really* glad it even came up as a suggestion. And that you tried it.

Anyway, welcome. Please keep us posted on how you're doing. People here can be very helpful and supportive (and part detective, too).

[allison]

Hi everyone!

Your responses are all much appreciated. This has been a very long and difficult road, and I was so SO grateful when I finally felt better that I didn't even want to darken the door of a doctor. The only reason I'm really serious about getting this checked out now is because I'm sick again.

For the record, I don't NEED the official result. Reading on this board, I think I may do a challenge, but only until it makes me sick. Then I'm out. I'll know and accept for sure. And be more careful. I know I must have CCed sometime in the last few months.

Right now, it's obvious that I'm having a major GERD issue (I should have stayed on the prevacid), which will probably show up on Monday in the endoscopy. Other than that, I am SOOOO dizzy, but my stomach has started to feel better and I'm grateful for that too.

I just find it so hard to function when dizzy! Anyone else dealing with this?

Here's another question for you all: something I didn't even connect with gluten before: mouth sores. Have you all had them? What did they look/feel like? I had white BIG ones in the the back of my throat, almost on my tonsils.

Thanks again everyone--this board is a saviour!

Allison

All

Hi Allison,

You can search around the boards a bit about testing, because a lot of people wrestle with it. I think part of the question is, do you personally need an official diagnosis? Some people need to have it medically confirmed, for whatever reasons. And if that's what you need, then that's a valid reason. Some figure if you improve on the diet, what more evidence do you need?

Some notes of caution:

1) A positive result is a positive result, but a negative result is a big question mark. There seem to be a lot of people on the boards who officially tested negative but definitely react to gluten. From what you've said, it sounds to me like it would be in your best interest to live gluten free no matter what you get for test results.

2) In my experience (and others have mentioned it, too) after you have gone gluten-free, you may be even more sensitive to gluten than you were before. It's like now your body has enough strength to really react to it. That may be where you are now-- A new job and stress can distract you enough that some small amount of gluten sneaks in and whammo! I used to get big red hives when I ate wheat. I had an accidental challenge this spring. I got a full-on anaphylactic reaction.

There were times when I wanted to get tested for celiac disease since I do get digestive symptoms as well (they just come later). I still wonder if I'm "really" Celiac, but after that last incident, I am firmly in the "not worth it" camp.

I would say the doctor who suggested eliminating gluten should have tested you then... But so many people have problems getting their doctors to even recognize that there's a problem, so I'm *really* glad it even came up as a suggestion. And that you tried it.

Anyway, welcome. Please keep us posted on how you're doing. People here can be very helpful and supportive (and part detective, too).

[key]

I tried to eat gluten for a challenge, but only lasted like 2 days. I was sick as a dog! It was miserable and so I have never made it through one.

My guess is that you are getting gluten contamination from somewhere else. I don't know about the dizziness. You may want to ask in a separate topic about that. I had that once in College and don't know if it was related to undiagnosed celiac disease, but it was horrible.

As far as the reflux, there are quite a few of us having that right now too. I am not really sure what else is causing mine or if I have gotten gluttened from somewhere. THe endoscopy will help see where you are at anyway.

Goodluck and hope you feel better soon.

Monica

Have you had a flu shot? Just curious, because I have heard of a few people having dizziness after that. I had two relatives that had it for awhile. I also had had an MMR vaccine when I suffered dizziness in college. Mine lasted for 6 months. I do vaccinate my kids, but still worry about possible side effects, but they have been ok, so far.