Celiac Testing

[elizabethkswann]

Hi! I'm a college student at Kent State University in Kent, OH. I have had Celiac's since I was about 12, but have never been "technically" diagnosed with it. There are no gluten-free food options on-campus for me. The main cafeteria has a bagel place, hot dogs, fried chicken, and a Quiznos. Even though I've been living off salads, even that makes me sick because workers don't use proper sanitary precautions, like changing gloves or washing cutting boards. I'm trying to get out of on-campus housing so I can make my own food so I won't get sick everyday. I'm going to a gastroenterologist to get blood work done. I haven't eaten gluten in about 7 years. Will this effect my chances of showing up positive on the tests? I really need to be able to make my own food, because I have dirrhea almost everyday, fatigue, bloating constantly, headaches, and other common symptoms. Thanks!

[CDFAMILY]

Hi Elizabeth,

My daughter Elizabeth also has Celiac and attends UA. Please ask to talk to the head of the Campus Food Service. Discuss with them your needs. Tell them to call Akron U if they have any questions as I am sure they would be glad to help.

We did this at UA 3 years ago and you would not believe how wonderful they have been. She just has to call ahead 1 hour to let them know she is coming and they prepare her many wonderful gluten free meals. They have special pans and special foods set aside just for her and anyone else that requests gluten-free.

If they don't want to help, you might consider going to UA instead if that is an option. It is only a 15 minute difference in driving.

If you have been gluten free for 7 years, you might have a problem getting a positive test so I would also ask for them to also do the HLA DNA test to see if you have DQ2 or DQ8 or both. Remember, if the tests are negative and you have the HLA DQ2 or DQ8, then they can not say you do not have Celiac, they can only say you are not testing positive at the time which of course is because you have been gluten free for a long time.

I would be careful if they want you to do a challenge...my daughter did this and became severely anemic with all levels falling dangerously low. Within a year she was also diagnosed with Graves Disease.

I think challenges are a form of medical malpractice if you ask me. You just should not make someone sicker on purpose.

Good Luck

[kate31]

Your school's disability services office should be able to help you out. If you can bring them documentation, they should be able to accommodate your diet. This could be anything from them meeting with dining services with you to discuss cross-contamination prevention to ensuring certain foods are available for you. As a last resort, if the dining hall cannot meet your needs, they may be able to let you out of the meal plan and get you access to a dorm with a kitchen.

[elizabethkswann]

I appreciate the replies dealing with food service, but my question was more about the process of testing and how long it will take. Thanks!

[mushroom]

I appreciate the replies dealing with food service, but my question was more about the process of testing and how long it will take. Thanks!

As CDFAMILY said above, if you have been gluten free for seven years, there is a minimal chance of there being antibodies to show up on the blood testing or damage to show up in the small intestine. I believe the further replies were directed to courses of action to take to get around the fact that you will not get a positive test without going back on gluten for at least three months, the equivalent of three to four slices of bread a day. This is what it would take to build up a testable level of antibodies to make the agony of a gluten challenge worthwhile and produce the likelihood of a positive test. Even then a positive test is not a certainty because there is an approximate 20% false negative rate in the testing. Also, you may not be celiac but non-celiac gluten intolerant, which means you will never give a positive test, but will suffer the same symptoms and risks from gluten.

Those of us who have gone gluten free because no one ever thought of testing us for celiac and/or we didn't know about celiac, we just knew we didn't get along with wheat, generally just learn to live with the self-diagnosis because we could not ever contemplate eating gluten again for three months.