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Celiac Or Gluten Intolerance

enolah

By enolah
in Coping with Celiac Disease

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enolah Rookie
enolah
Posted

Hi there,

We are going on the assumption that our daughter has gluten intolerance. Her biopsy was negative. Her last endomysial IgA two years ago was negative, but she has had abnormal fecal fat on two different occasions along with classic celiac symptoms and DQ2 heterozygote state.

She will be going to college next fall and will need to make special dietary arrangements with food service. Should she say she has celiac disease (which her GI doctor will probably not back up) or that she's gluten intolerant. I feel like she would be taken more seriously if she said celiac disease.

Any advice?

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kitgordon Explorer
kitgordon
Posted

Whichever she feels comfortable with; I am self-diagnosed (classic GI symptoms, 5 diagnosed family members, lousy insurance coverage), but I say I have celiac disease. Of course half the world doesn't know what you're talking about no matter what you call it!

Jestgar Rising Star
Jestgar
Posted

You say that she has malabsorption (as shown by the fecal fat scores) and is unable to consume enough gluten to conduct the proper tests (could be true....). She is on a strict gluten free diet to try to resolve her malabsorption issues and she is being followed by a doctor for this.

srall Contributor
srall
Posted

I don't know if I have celiac even though I had so many symptoms. I KNOW I'm gluten intolerant. I feel weird saying I have celiac, because I don't know if I'm lying or telling the truth. HOWEVER, in some situations where I need people to take me very seriously, like a restaurant for example, I say whatever I need to say to get my point across whether it's "I have celiac" or "I am allergic to wheat/dairy." If your daughter could get a doctor's note saying she

is celiac that sure would be helpful. Too bad the doc won't just help her out. I mean she has to follow the diet and the results of eating gluten are probably the same.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Is she required to have a meal plan and eat in the cafe? I have seen many people post about how difficult it is and how limited their diet is when they try to eat in the dorm cafe even if they have a dr note that they have celiac. If she can skip the meal plan you might instead get her a fridge and a microwave and have her do all her own food. She can pack a gluten free lunch for times when she doesn't have time to go back to the dorm and cook. There are lots of gluten free things that can be made in a microwave--Progresso Soup, Thai Kitchen meals, steamer veggies, rice, asian rice noodles, etc.

ravenwoodglass Mentor
ravenwoodglass
Posted

I would talk to her regular doctor if that doctor had been seeing her when she was ill and then referred her to the GI. Make a 'check up' visit and after the exam talk to the doctor about the issue. He/She will be able to see how much better your DD is doing gluten free. Let the doctor know she is going to college and see if he will diagnose based on her recovery. If she is diagnosed the college has to either be able to feed her safely or make some kind of allowance so she can feed herself. My DD was allowed into senior housing her freshman year so she could have a room with a kitchenette. You may not even need to show the college anything, we didn't, but with celiac being more commonly diagnosed lately they may want something from the doctor.

enolah Rookie
enolah
Posted
  • Author

I would talk to her regular doctor if that doctor had been seeing her when she was ill and then referred her to the GI. Make a 'check up' visit and after the exam talk to the doctor about the issue. He/She will be able to see how much better your DD is doing gluten free. Let the doctor know she is going to college and see if he will diagnose based on her recovery. If she is diagnosed the college has to either be able to feed her safely or make some kind of allowance so she can feed herself. My DD was allowed into senior housing her freshman year so she could have a room with a kitchenette. You may not even need to show the college anything, we didn't, but with celiac being more commonly diagnosed lately they may want something from the doctor.

I'm pretty sure her GI doctor would write a letter saying she's gluten intolerant but not having celiac disease. Luckily, her pediatrician has celiac disease herself, so I think she will be highly supportive in writing any necessary letters. So far, we haven't contacted any of the colleges she has applied to to ask about special housing arrangements. One of the colleges even has gluten free options at two of their dining halls. Once she gets her acceptance letters and decides where to go, we will be contacting them to discuss this issue. I'm hoping they will allow for an extra refrigerator in the room to hold her food.

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