Gluten Challenge - Accurate?

[Jennn19]

Hi!

 

I've been gluten-free for nearly 2 years - with the first 6ish months a learning experience about cross-contamination.  I've also been diagnosed with endometriosis, and allergies to casein and egg white (skin prick testing).  I'm considering doing a real a gluten-challenge and getting tested for celiac and I'm looking for advice/opinions.  I have an appointment with my (new) primary care doctor on Monday to talk about this, among other things.

 

Long story short - I suffered years with severe abdominal pain.  In a single year I had 6 ovarian cysts rupture, and I was finally surgically diagnosed with endometroisis in September 2011.  They removed the adhesions and scar tissue and about 80% of my pain was relieved - it was amazing!  

 

By the following September I was still having GI issues (soft stool, gas, abdominal pain, painful BM, etc.) that was originally attributed to the endo, so my old primary care doctor suggested I try going gluten-free to see if that helped.  Well, it did help - a lot, but not completely, so in February 2013 I was tested for food allergies and learned about the casein and egg allergy as well.  When it comes to my abdominal area, I'm a wreck, and it's really hard to figure out where the endo pain ends and the food allergies begin.

 

After eliminating all three - gluten, casein and egg completely from my diet I felt better than I knew I could feel.  I had no idea how sick I really was.  I had normal BM, almost no gas, it was wonderful!  After about 6 months of feeling awesome (with occasional cross contamination issues with the learning curve), I decided to do a small gluten challenge of my own.  I was hoping that it was just the casein and egg causing the problems and that maybe gluten wasn't so bad after all, so I ate a sandwich with regular (casein and egg free of course) wheat bread.  I felt okay immediately after, but within 24 hours I was doubled over in severe gas and abdominal pain that reminded me of the ruptured ovarian cysts I used to get.  So, I decided then that a real gluten challenge and eating like that every day for weeks was totally not worth it and decided to just be gluten-free.

 

Since then, I have had occasional bouts of severe gas and pain like I had with the sandwich, and each time I've been able to look back at the food I've eaten and find something that I ate where I didn't check a label closely enough that turned out to have gluten in it (like the bacon that had barley malt syrup in it for example, ugh!).

 

Now, over the past 6 months, my abdominal pain and GI symptoms are returning.  I honestly can't tell if it's endo or food allergy/intolerances or what - hence the appointment coming up.  I've been extra careful to avoid gluten and my allergens, so I don't think that's causing it but I'm back to thinking about doing the gluten challenge and getting a diagnosis.  I'm thinking now might be a good time because I'm already hurting again anyways, so why not?  My reason for wanting to rule out or in celiac are mainly because I'm tired of having to justify my gluten-free diet, but I do have things like colon cancer in my family so I want to know if I'm going to have an even greater risk of it than I would otherwise.  My current doctor doesn't seem to think it's necessary for me to be gluten-free, many of my friends and family think it's just a fad but I'd really like to know whether the occasional contamination is causing actual damage and risk.

 

I'm hesitant to do the challenge, not just because of the pain it will cause, but I'm also worried that after 2 years of being gluten-free that the test results may not be accurate.  I'm curious about diagnoses - false positives and false negatives after being gluten-free for so long and doing a challenge.

 

Does anyone have any information about celiac testing after being gluten free for so long?  Is it accurate enough to be worth it?

 

[BlessedMommy]

Have you tried doing antibody testing anyway to see what your levels are? There is one member here who got a positive result on a blood test after 3 years gluten free!

 

As far as the gluten challenge, keep in mind that you have to eat a lot of gluten to complete a gluten challenge. (1-2 slices of bread per day for 8-12 weeks) If your symptoms are severe, then it may not be worth it. I was hospitalized with neurological complications on day 10 of my gluten challenge. Though I wonder if I have celiac, it's not worth risking a stroke to nail down a diagnosis. Therefore I'm firmly in the "can't get tested" camp. Keep in mind that my complications are RARE. Most people who gluten challenge will not have those problems. 

 

But for my kids, the benefits of getting a DX (or not, but either way knowing what was going on and getting out of limboland) were so overwhelming that I made the decision to gluten challenge them. They have been doing their gluten challenges since July and are doing okay. I'm pretty certain that they will have no trouble completing a full 12 weeks on gluten.

 

Only you can decide for sure what the risk/benefit ratio for you is, when it comes to gluten challenges. 

 

However, keep in mind that if you decide to continue gluten free and forgo a DX, you have to assume that you have celiac and treat it as such with a 100% strict gluten free diet. No cross contamination and no cheating. I know that celiac is a definite possibility for me and I really, really don't want to suffer the complications of untreated celiac, so I just live like I have confirmed celiac. Then if science ever advances and I get a confirmed DX, I don't have to live in regret for having a lax approach to my diet and worry about health complications.

[SMRI]

Why do you want the testing?  From your description you are either gluten sensitive or have Celiac.  Unless you need the official diagnosis for something at work or whatever, I would not do the challenge for testing.  There really is no point and why suffer for 2 months just to learn what you already know?

[Jennn19]

Thanks BlessedMommy!  That's really interesting that someone tested positive after being gluten free!  I plan to ask my doctor about testing and I'll ask him if I can have the antibody testing done first without the gluten challenge - I'm also going to ask about whether I can/should have the genetic test to rule out Celiac as well (I know it won't give me a diagnosis but it will at least tell me if it's even a possiblity or not).

 

And you're right about just assuming the worst and staying gluten free!  I have no intentions of going back to eating gluten full-time or cheating and I'm very nervous about how I'll react to a challenge and whether I can even stick it out for long enough to get results. 

 

SMRI - I want a diagnosis because I'm tired of not being taken seriously.  It seems like I'm treated (by doctors, pharmacists, family, friends, etc.) like my gluten-free requirement is just a preference and it's just all in my head because I can't say that I have a medical diagnosis of anything.  You're right that I know that I'm at the very least sensitive/intolerant, but I'm looking for some kind of medical documentation I can point to when talking to medical professionals about ingredients in meds, my diet/meal planning/nutritional needs, etc.  And family and friends.. well a diagnosis won't help me with anything other than being able to tell them the doctor agrees with me I guess.  :/

[Tomislav]

Hi Jen, about the gluten challenge.. Mostly GI recommend the Gluten challenge so they can see whether you have celiac disease or dont.. The 2 year diet doesnt matter , it takes like 2 weeks to go on the Gluten challenge and if u do have celiac disease, the tests will be positive , i know that the gluten challenge can be unconfortable since i have already taken it so.. I think thats the only way to answer your questions that are messing around in your had... Im looking forward into hearing the results .

[kareng]

Here is the current recomendations:

 

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" For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

• Prior to blood testing we recommend 12 weeks of eating gluten.
• Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten."

[nvsmom]

Hi Jen, about the gluten challenge.. Mostly GI recommend the Gluten challenge so they can see whether you have celiac disease or dont.. The 2 year diet doesnt matter , it takes like 2 weeks to go on the Gluten challenge and if u do have celiac disease, the tests will be positive , i know that the gluten challenge can be unconfortable since i have already taken it so.. I think thats the only way to answer your questions that are messing around in your had... Im looking forward into hearing the results .

I disagree with the two week challenge being all it takes.  While it is true that the gluten challenge for the endoscopic biopsy usually only requires 2-4 weeks of gluten, if you have blood tests done most doctors will recommend 8-12 weeks of about 1-2 slices of bread per day.  If you are eating more gluten than that you may be able to do a shorter challenge (4-8 weeks) but it doesn't work for everyone.  If you test early and get a negative, you may want to retest after the 12 week gluten challenge to see if that changes anything.

 

If you do decide to do the gluten challenge, I wish you good luck!

[linen53]

I disagree with the two week challenge being all it takes.  While it is true that the gluten challenge for the endoscopic biopsy usually only requires 2-4 weeks of gluten, if you have blood tests done most doctors will recommend 8-12 weeks of about 1-2 slices of bread per day.  If you are eating more gluten than that you may be able to do a shorter challenge (4-8 weeks) but it doesn't work for everyone.  If you test early and get a negative, you may want to retest after the 12 week gluten challenge to see if that changes anything.

 

If you do decide to do the gluten challenge, I wish you good luck!

I'm just learning about all of this.  I was tested at my doctor's office and yesterday when my doctor's office called and said I was not gluten intolerant, I  was blown away.  So I came online and found this thread.  The gluten challenge was new information to me.  When I learned I'd have to eat gluten food for 4-12 weeks.  I said no way.  My hubby was the one who insisted I do the blood test at my doctors.  But when he found out I'd have to go back on gluten for the gluten challenge to get the antibodies built up again..... he backed down.  He says as long as I stay gluten free and am not in pain that is good enough for him.  There is just no way I can go back on gluten. 

[nvsmom]

I'm just learning about all of this.  I was tested at my doctor's office and yesterday when my doctor's office called and said I was not gluten intolerant, I  was blown away.  So I came online and found this thread.  The gluten challenge was new information to me.  When I learned I'd have to eat gluten food for 4-12 weeks.  I said no way.  My hubby was the one who insisted I do the blood test at my doctors.  But when he found out I'd have to go back on gluten for the gluten challenge to get the antibodies built up again..... he backed down.  He says as long as I stay gluten free and am not in pain that is good enough for him.  There is just no way I can go back on gluten. 

 

Most celiacs will test as normal after eating gluten-free for weeks, months (usually), or years - that means we're treating ourselves correctly!  

 

Evil gluten...

[Jennn19]

Most celiacs will test as normal after eating gluten-free for weeks, months (usually), or years - that means we're treating ourselves correctly!  

 

Evil gluten...

 

I've heard that before and that's exactly why I'm worried that doing a gluten challenge may not be conclusive.

 

Thanks to everyone for your responses!  I have a lot of great information to think about and to talk to my doctor about on Monday. 

 

~Jennn

[Glutenfreemomma]

I'm in the same predicament. People don't believe me. I would love to know if I have Celiac but am afraid to do the gluten challenge. I don't want to worry if cross contamination is hurting me but mostly I want to have a diagnosis so family and friends don't mock me and treat my problem:health with respect. It is all so frustrating. I'll be interested in hearing what your doctor says. Mine said to remain gluten free and is not encouraging the challenge.

[Jennn19]

I'm in the same predicament. People don't believe me. I would love to know if I have Celiac but am afraid to do the gluten challenge. I don't want to worry if cross contamination is hurting me but mostly I want to have a diagnosis so family and friends don't mock me and treat my problem:health with respect. It is all so frustrating. I'll be interested in hearing what your doctor says. Mine said to remain gluten free and is not encouraging the challenge.

 

My doctor said basically the same thing.  He doesn't recommend trying the gluten challenge because of the severity of my reaction to gluten.

 

While doing research, I found some news that a new Celiac test is being developed that only requires a 3 DAY gluten challenge.  It's still in research phase, but it's looking hopeful.  I'm keeping my fingers crossed for this test to prove to be accurate.  I wouldn't hesitate to do the challenge if I only had to do it for 3 days.  Here's info:

 

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[Noobette]

I'm also considering waiting for a few years for improved testing. I was quite encouraged by that report of the 3-day gluten challenge!

[Glutenfreemomma]

Thank you for sending me the link to this article. I am really excited to hear about this new test! I can do 3 days too. I just don't think I'm every going to make it through 3 months on gluten!

[Noobette]

I think the 3-day test is only in the developmental stage, and it could be several years before it's actually available.

[BlessedMommy]

That would be a wonderful thing for so many people. I also hold out hopes that they will make an option that requires no gluten consumption at all. (but I suppose that those of us who can't eat gluten for any reason, kind of have our answer anyways)

[Glutenfreemomma]

Have any of you had the Enterolsb testing done? I'm thinking of doing that soon.

[kareng]

Have any of you had the Enterolsb testing done? I'm thinking of doing that soon.

 

Those tests are not currently considered accurate or proven.

 

 

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[Glutenfreemomma]

Thanks for the link. I knew this information but was thinking it might still be worthwhile. I'm thinking I might just wait for the new test that will hopefully be available in a few years.

[Cara in Boston]

My blood test went from positive to negative after only two weeks being gluten free.  The doctor wanted me to do a challenge and then be re-tested.  He said the challenge needed to be 4-6 MONTHS long to be certain.  I was already feeling fantastic so I was skeptical about returning to my previous symptom-filled life for 6 months just to get an official diagnosis.  I already knew I would be gluten free regardless of the results.  I ended up starting the challenge but giving up after about a month.  The doctor did the endoscopy anyway and it came back negative.  Doesn't really matter, I went back to being gluten free and once again, the symptoms disappeared.  

 

My son, on the other hand, was still testing positive after 6 months of being gluten free.  

 

It is different for everyone.

 

What will you do differently if you get a positive or negative test result?  Sounds like you already know you should be gluten free.  How will an "official" diagnosis change anything. What happens if you test (falsely) negative?   The biopsy only confirms Celiac, it cannot rule it out.

[BlessedMommy]

4-6 months for a challenge? 

 

I thought that 3 months was enough.

 

I'm almost to the 3 month mark of challenge with DD and was going to take her in for bloodwork next week.

[kareng]

4-6 months for a challenge? 

 

I thought that 3 months was enough.

 

I'm almost to the 3 month mark of challenge with DD and was going to take her in for bloodwork next week.

 

That is what the U of C recommends:

 

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A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

• Prior to blood testing we recommend 12 weeks of eating gluten.
• Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

[BlessedMommy]

Good. I'm pretty tired of DD's gluten challenge and ready to get it over with! 

[Gwensmom]

I am new to this. I Have been learning a lot and just found out about the gluten challenge. Iam not going to do it. I know I have a problem with gluten and both celiac and gluten intolerance run in my family. But, just eating corn bread made with spelt was horrible and that was one meal. I can't live that way for a couple months.

I would like to know if it is celiac or gluten intolerance, but I don't think knowing for sure is worth all the pain.

I am just now learning how careful I need to be.