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Is 3 Weeks Long Enough For A Gluten Challenge?

passionfruit877

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passionfruit877 Apprentice
passionfruit877
Posted

I saw a GI today who said he doesn't think I have Celiac but said I might as well be tested since I'm only 22. I have been gluten free for 6 months so he asked me to eat gluten for 2 weeks then get a biopsy. The biopsy is actually scheduled for 3 weeks though. I'm not sure what to do. I really want to call and cancel the endoscopy and just say I'm gluten sensitive. I don't really want to eat it. And they scheduled me for a Celiac panel that I can go get done whenever I have time. Is this worth it?

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jerseyangel Proficient
jerseyangel
Posted

I saw a GI today who said he doesn't think I have Celiac but said I might as well be tested since I'm only 22. I have been gluten free for 6 months so he asked me to eat gluten for 2 weeks then get a biopsy. The biopsy is actually scheduled for 3 weeks though. I'm not sure what to do. I really want to call and cancel the endoscopy and just say I'm gluten sensitive. I don't really want to eat it. And they scheduled me for a Celiac panel that I can go get done whenever I have time. Is this worth it?

After being gluten-free for 6 months, 3 weeks just isn't enough time to insure an accurate test result. The rule of thumb is to eat the equivalent of 3-4 slices of wheat bread a day for 3-4 months.

I would reschedule both tests for later on--the blood test probably won't be accurate either at this point.

passionfruit877 Apprentice
passionfruit877
Posted
  • Author

After being gluten-free for 6 months, 3 weeks just isn't enough time to insure an accurate test result. The rule of thumb is to eat the equivalent of 3-4 slices of wheat bread a day for 3-4 months.

I would reschedule both tests for later on--the blood test probably won't be accurate either at this point.

But is it even worth it? And I was confused that he scheduled the blood test and the biopsy at the same time. Shouldn't I just try the blood test and if it comes back positive then do the biopsy? I ate like 3/4 of a piece of bread when I got back and now I'm bloated. He said I had two options, just keep eating gluten free or do the testing. I'm thinking maybe I should just call him and pick option 1.

ciavyn Contributor
ciavyn
Posted

Hm, I want to say go with your gut, but I think it's already biased! :) I am undiagnosed. So far, I've had no issues. I'm an adult, so I don't need to worry about school lunches or college issues (I am in grad school, and they've been great about it when I'm on campus) and other than that, I have had "gluten sensitivity" put on my medical chart. For me, a diagnosis would require funds and misery that I have not the patience for. So I'm good. But you have to do what you can live with. Good luck!

DebbieM Rookie
DebbieM
Posted

I would give it longer...I just did a 3 month challenge and the results were "suggestive of mild/early" celiac. DR wants me to do 3 more months on gluten and do the endoscopy again!!!!!!! It might depend how long you were gluten free???

passionfruit877 Apprentice
passionfruit877
Posted
  • Author

I would give it longer...I just did a 3 month challenge and the results were "suggestive of mild/early" celiac. DR wants me to do 3 more months on gluten and do the endoscopy again!!!!!!! It might depend how long you were gluten free???

Debbie, how long were you gluten free beforehand?

jerseyangel Proficient
jerseyangel
Posted

But is it even worth it? And I was confused that he scheduled the blood test and the biopsy at the same time. Shouldn't I just try the blood test and if it comes back positive then do the biopsy? I ate like 3/4 of a piece of bread when I got back and now I'm bloated. He said I had two options, just keep eating gluten free or do the testing. I'm thinking maybe I should just call him and pick option 1.

Positive response to the gluten-free diet, and symptoms that recur when adding it back is a valid diagnostic tool in and of itself. If you are comfortable listening to your body and don't need a firm medical diagnosis, then just go 100% gluten-free yourself. You don't need a doctor to tell you what to eat--if it makes you sick, don't eat it. :) This board is an excellent resource, and we'll do everything we can to help you.

If, and only if, you decide you want to be tested you do need to be eating gluten for longer than 3 weeks. Some doctors do the blood tests first but not all. Mine went straight to the biopsy and never did the bloodwork.

It's a personal decision and completely up to you. :)

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tarnalberry Community Regular
tarnalberry
Posted

But is it even worth it? And I was confused that he scheduled the blood test and the biopsy at the same time. Shouldn't I just try the blood test and if it comes back positive then do the biopsy? I ate like 3/4 of a piece of bread when I got back and now I'm bloated. He said I had two options, just keep eating gluten free or do the testing. I'm thinking maybe I should just call him and pick option 1.

Only you can answer that. I was in a similar position (though I hadn't even been gluten free for as long as you had been) when I went in for testing. The results were inconclusive, and I had to decide if I wanted to go back on gluten for further testing. I tried one gluten challenge (made it pretty massive, but still) and felt awful. I decided that the results from the dietary challenge were enough for me, and opted not to keep eating gluten. I've been perfectly fine with my "doctor approved self-diagnosis" but it's a personal decision.

(It would make sense, if it's a reasonable suspicion, to do the blood tests and biopsy at the same time, so you don't have to be on gluten longer than necessary.)

passionfruit877 Apprentice
passionfruit877
Posted
  • Author

Only you can answer that. I was in a similar position (though I hadn't even been gluten free for as long as you had been) when I went in for testing. The results were inconclusive, and I had to decide if I wanted to go back on gluten for further testing. I tried one gluten challenge (made it pretty massive, but still) and felt awful. I decided that the results from the dietary challenge were enough for me, and opted not to keep eating gluten. I've been perfectly fine with my "doctor approved self-diagnosis" but it's a personal decision.

(It would make sense, if it's a reasonable suspicion, to do the blood tests and biopsy at the same time, so you don't have to be on gluten longer than necessary.)

I'm worried that I'm wrong. Sometimes I get sick after I eat, like immediately. But today when I ate that bread I just got really bloated and now I have heartburn. I don't have stomach cramps. And I have to go in between Monday and Thursday to get the blood test, they told me just go whenever. I though maybe I could just wait a week and go get the blood test done, and if its negative cancel the endoscopy. Honestly, I don't want to do an endoscopy.

AlysounRI Contributor
AlysounRI
Posted

I'm worried that I'm wrong. Sometimes I get sick after I eat, like immediately. But today when I ate that bread I just got really bloated and now I have heartburn. I don't have stomach cramps. And I have to go in between Monday and Thursday to get the blood test, they told me just go whenever. I though maybe I could just wait a week and go get the blood test done, and if its negative cancel the endoscopy. Honestly, I don't want to do an endoscopy.

I'm with the rest of the people that gave their opinions.

Both my endo and my blood tests were normal except for the IgA levels.

I am not willing to go back to eating what I know is poison for me!!

If you want to do the blood testing, then great. If you don't want to do the endo, then great :)

If you know that the gluten hurts you and you are not planning to have children (unrecognized celiac and fertility issues are very linked, it seems), then just follow what YOU know to be good for you. You can always find a celiac support group near you, as it's full of gluten intolerant people too. You'll come away with some really interesting experiences, and very beneficial ones too.

Just my two sous,

~Allison

passionfruit877 Apprentice
passionfruit877
Posted
  • Author

Ah, ok now I'm feeling it. I ate some soup and my stomach feels very bloated. I also have heartburn and that tightness in my chest. How long would I have to wait to take the blood test? They said whenever, so I could do it next week. I have gluten intolerance in my family, as well as lactose intolerance. I don't know that any of them were able to test positive, and one has taken the blood test 3 times. I will definitely stay off gluten either way.

I don't mean to come off as whiny. I just really don't know what to do.

AlysounRI Contributor
AlysounRI
Posted

I don't mean to come off as whiny. I just really don't know what to do.

You're not coming across as whiny at all!!

We all know what this hell feels like.

It will pass, sooner than later hopefully.

But it sounds to me like taking a gluten challenge is not something you are going to want to do ....

I hope you feel better soon :(

~Allison

tarnalberry Community Regular
tarnalberry
Posted

Ah, ok now I'm feeling it. I ate some soup and my stomach feels very bloated. I also have heartburn and that tightness in my chest. How long would I have to wait to take the blood test? They said whenever, so I could do it next week. I have gluten intolerance in my family, as well as lactose intolerance. I don't know that any of them were able to test positive, and one has taken the blood test 3 times. I will definitely stay off gluten either way.

I don't mean to come off as whiny. I just really don't know what to do.

It kinda sounds like you know what to do, but are not CONFIDENT. Be confident that something isn't right when you don't feel well. The exact symptoms may not always be the same, but if you eat gluten and then feel worse, that's a pretty strong sign!

If you want the tests, though, prepare to eat plenty of gluten (3-4 slices of bread a day) for a long time (3-4 months).

ravenwoodglass Mentor
ravenwoodglass
Posted

Ah, ok now I'm feeling it. I ate some soup and my stomach feels very bloated. I also have heartburn and that tightness in my chest. How long would I have to wait to take the blood test? They said whenever, so I could do it next week. I have gluten intolerance in my family, as well as lactose intolerance. I don't know that any of them were able to test positive, and one has taken the blood test 3 times. I will definitely stay off gluten either way.

I don't mean to come off as whiny. I just really don't know what to do.

You need to be back on gluten for the same length of time for the blood test as you do for the endo. Even then false negatives are all too common. Sounds like your body is giving you the answer. The next few days may be rough. Whether you want to continue for another 2 or 3 months is up to you.

DebbieM Rookie
DebbieM
Posted

Debbie, how long were you gluten free beforehand?

I had been off for 9 months

passionfruit877 Apprentice
passionfruit877
Posted
  • Author

You need to be back on gluten for the same length of time for the blood test as you do for the endo. Even then false negatives are all too common. Sounds like your body is giving you the answer. The next few days may be rough. Whether you want to continue for another 2 or 3 months is up to you.

Hmm, I'm not liking the word "months" there. Ok, I think I'm not gonna do it. It's not a good sign if I'm ready to give up after one day. He did say the only difference was that if I did have Celiac disease I would just have to check up with a doctor every so often, maybe get screened for osteoporosis later. I could do that on my own. He told me constipation is rare with Celiac disease (and that Celiac itself is rare) and so I probaby don't have it. I can accept just gluten intolerant.

tarnalberry Community Regular
tarnalberry
Posted

well, he's "right" when he says celiac is rare, but only in comparison to common things like how many people are likely to get a cold during cold season. :/

The rate of celiac disease incidence in the population is 1%. 1 in 133 is the last study I've read, but the numbers seem to vary somewhere between a tiny bit over 1% and a tiny bit under.

passionfruit877 Apprentice
passionfruit877
Posted
  • Author

well, he's "right" when he says celiac is rare, but only in comparison to common things like how many people are likely to get a cold during cold season. :/

The rate of celiac disease incidence in the population is 1%. 1 in 133 is the last study I've read, but the numbers seem to vary somewhere between a tiny bit over 1% and a tiny bit under.

Well thank you all for responding. I felt a little stressed and confused this morning, but now I think I feel confident about my decision.

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