Getting Tested For Celiac: Please Help (questions about gluten challenge)

[jk-powerlifter]

Hello Everyone, 

My name is Johnny, I'm 20 years old, and I have been ordered to be tested for Celiac by my doctor. Anyway, to give some background, my whole life I have had stomach/g.i. issues (bloating, pain, constipation/diarrhea, etc).  I've also had trouble gaining weight, constantly getting injured and sick, etc. My whole family has issues like this but none of us have been tested.

Anyway, this past year my symptoms increased significantly and once again I tried to ignore it. It was not until I removed gluten unintentionally that I realized it may be an issue. I began a powerlifting diet (semi-strict) about 2 months ago that included carb sources such as rice, potatoes, fruit, etc. but no foods that contain gluten. I felt amazing on this diet and realized about a few weeks in that gluten was giving me issues. It was at this point that I scheduled an appointment with a gastroenterologist and she wants to test me for celiac. 

NOW, here's my question. I was semi-gluten free for 4-6 weeks. I'd have some gluten containing bread every few days or so but for the most part I tried to avoid foods with straight gluten (breads, pastas. etc.). There was definitely cross contamination though. I've been doing some research and saw that in order to test positive for celiac after being gluten free, a gluten challenge must take place. Since I was semi-gluten free for like 6 weeks, how long should I do a gluten challenge for/do I need one? Ever since my appointment two weeks ago, I have been eating gluten everyday to prepare for a blood test that I am planning to get this week. Should I wait longer? 

Please help me out on this, my doc never mentioned a gluten challenge. It would be appreciated.

Thanks, 

Johnny 

[GFinDC]

Hi Johnny,

We can't tell you for sure if your test results will be correct.  The usual gluten challenge is 12 weeks for the blood tests and 2 weeks for the endoscopy.  Most likely your antibodies numbers have changed since you went gluten-lite, and will not show the full antibody reaction they would have.

It's great that you are feeling better now though.  There has to be a reason for that and gluten is an obvious suspect since your symptoms improved after going gluten-free.  You now know that gluten is a problem for your body as most people shouldn't have any big positive change from going gluten-free.  Unless they have celiac disease or are gluten intolerant.

I suggest you search the web in your city/area and try to find a doctor who is knowledgeable about celiac disease.  It doesn't sound like your current doctor is giving you good advice regarding testing

[cyclinglady]

Everything GFinDC said......?

[jk-powerlifter]

54 minutes ago, GFinDC said:

Hi Johnny,

We can't tell you for sure if your test results will be correct.  The usual gluten challenge is 12 weeks for the blood tests and 2 weeks for the endoscopy.  Most likely your antibodies numbers have changed since you went gluten-lite, and will not show the full antibody reaction they would have.

It's great that you are feeling better now though.  There has to be a reason for that and gluten is an obvious suspect since your symptoms improved after going gluten-free.  You now know that gluten is a problem for your body as most people shouldn't have any big positive change from going gluten-free.  Unless they have celiac disease or are gluten intolerant.

I suggest you search the web in your city/area and try to find a doctor who is knowledgeable about celiac disease.  It doesn't sound like your current doctor is giving you good advice regarding testing

Thank you so much for the response. I will definitely look for a new doc..in the meantime though, should i still continue with getting the blood test this week you think? I’m sort of crunched for time because i am going back to school in a few weeks. And considering I was gluten-lite for only a month or so, i’m hoping my results won’t be skewed too much. 

[GFinDC]

Hi Johnny,

The U of Chicago celiac center says a few days gluten-free before testing may be ok.  You have been gluten lite for longer than that so it's anybodies guess where your antibody results will come in.  If you have insurance to cover the cost, I think it is probably worthwhile to have the test.  But only if it is the complete celiac disease test panel which includes multiple antibody tests, not just the ttg-IgA test.  Some people only make one type of antibody and it may not be the IgA type.  So just the ttg-IgA can miss those folks.. The tests should include DGP IgA, DGP IgG, ttg-IgA, total serum IgA, and EMA.

http://www.cureceliacdisease.org/faq/i-stopped-eating-gluten-right-before-my-screening-will-that-impact-my-results/

To get the most accurate screening results, we recommend 12 weeks of daily gluten intake prior to blood testing. If you’ve followed a gluten-containing diet, as recommended, but went gluten-free a few days prior to your screening, it’s likely that you’ll still see accurate results from your tests. December, 2012

Edited July 10, 2019 by GFinDC

[jk-powerlifter]

16 minutes ago, GFinDC said:

Hi Johnny,

The U of Chicago celiac center says a few days gluten-free before testing may be ok.  You have been gluten lite for longer than that so it's anybodies guess where your antibody results will come in.  If you have insurance to cover the cost, I think it is probably worthwhile to have the test.  But only if it is the complete celiac disease test panel which includes multiple antibody tests, not just the ttg-IgA test.  Some people only make one type of antibody and it may not be the IgA type.  So just the ttg-IgA can miss those folks.. The tests should include DGP IgA, DGP IgG, ttg-IgA, total serum IgA, and EMA.

http://www.cureceliacdisease.org/faq/i-stopped-eating-gluten-right-before-my-screening-will-that-impact-my-results/

To get the most accurate screening results, we recommend 12 weeks of daily gluten intake prior to blood testing. If you’ve followed a gluten-containing diet, as recommended, but went gluten-free a few days prior to your screening, it’s likely that you’ll still see accurate results from your tests. December, 2012

Okay thanks, I doubled checked and I am scheduled to get the full celiac panel. I believe I am getting the test done tomorrow so I will keep the forum updated when my results come in. 

Thanks once again

[cyclinglady]

I had my kid retested this summer as she is going off to college this fall.  Because we have a gluten-free house and she is “gluten light”, I made sure that she had a full 12 weeks before she had the complete celiac panel (because I never have had a positive on the TTG tests which are mist often used for screening).  If your test is negative, consider asking for an endoscopy if you can get it done before school or consider getting tested again at school and bring a note from your home doctor.  I am not sure how even our own university supplied health insurance works yet as we will just be applying for it after orientation (make it easier for my daughter to access medical care and not have to do insurance paperwork etc).  

Most newly diagnosed celiacs make many mistakes on the gluten-free diet (there is a steep learning curve).  You might still be making antibodies or you might have healed.  Hard to say.  Getting a diagnosis can really help with school.  It is one reason we had our daughter retested despite the fact that she is asymptomatic.