Meeting With Doctors On Monday

[Eriella]

So on Monday I have doctors' appointments with my family doctor and my GI, and I need them to give me a diagnosis so I can opt of my college meal plan or have the school make me food I can eat. I have been symptomatic for 2 1/2 years (acne, constipation, brain fog, mood swings, fatigue, anemia, tooth aches, and charlie horses) and I have said for the past 2 years that it is white flour (bread, pasta, cookie dough...) and beer that makes me sick. The GI told me to increase my fiber, and I did with all-bran and beans, and every morning after breakfast my stomach ached for 2 hours and it gave me diarrhea, so I decided to stop eating it. This was over a year ago. I avoided eating bread product except for in Italy and cookie dough (both made me so sick... but real italian pasta is worth it). We discovered in January that I have a family history of the disease and I decided that I would mention the possibility of celiacs to my doctor the next time I saw him (which is now).

In April my boyfriend's mom fed me pasta salad, a roll, and several beers. I spent the next week in bed unable to pass any bowel movements and called my GI to see if he could order the test. He ordered a blood test and it came back negative (surprise surprise-- If I was on a super-low gluten diet for 2 years without realizing it, I shouldn't have a lot of antibodies). However, immediately after I got the blood work done I stopped eating any gluten. When the nurse called me with my results she told me that I could try being off gluten because it wouldn't hurt anything, so I stayed off.

Within a week all of my symptoms have gone away. I feel much better, look much better, and act much nicer. Whenever I come into contact with gluten, whether I am folding flour tortillas, walk into Arby's, or eating something where I misread the label, I get all of my symptoms back and they are worse than before.

So we know I am gluten sensitive. Whether it is celiacs or some other version of the intolerance, it doesn't matter-- gluten makes me sick. It is clear. Even if it is "all in my head", not eating gluten makes my head say that I feel find now.

However, how do I convince my doctors? We won't be able to get a positive test and I am not making myself sick again to get one. Is there anything that I can say/do/show them to make them more receptive to the disease. I quite frankly don't care which one diagnoses me, and my GI knows a lot about the disease, I just need the letter.

Do you feel this is enough to get a diagnosis? If not, how should I proceed to get my school to cooperate?

Thanks!

[CarlaB]

The doctor might be more willing to give a gluten intolerance diagnosis than a celiac diagnosis. For celiac they usually want testing to support the diagnosis.

I'd tell the doctor exactly why you need the diagnosis.

[es2443]

I also tested negative for Celiac Disease but after eating gluten free for a couple of weeks I knew that was the problem. My doctor as of now didn't even diagnose me, he said if I wanted more testing for other stomach issues I could or I could just continue eating gluten free. One of these days I will request that he officially diagnose me with gluten intolerance. I also go to school and have to choose a meal plan. I just pay for the smallest meal plan possible and there is a chef at my school who goes out of his way for me and two others with celiac to make us food we can eat when nothing is available. This coming year he is actually sitting down with us to discuss a weekly meal plan so we will be eating better than we have been. I never had the offical diagnosis for the school to make accomodations for me. However, my doctor did give me a note to always have lean meat and low fat foods (before I figured out the gluten problem). I would try to get a note of some sort and make an appointment with the school nutritionist. All schools should be willing to help you, although if you ask me the smaller it is the more they seem to go out of their way (without a diagnosis). Good Luck! If you don't mind me asking, where are you going to school?

[Eriella]

I go to Ursinus College., which requires a meal plan, and the options are just what ratio of set meals to flex money you want. They all cost the same amount. It isn't that the cafeteria staff isn't helpful, they have some really knowledgeable people in catering and are always willing to tell me what has gluten in it on the serving line.

If I don't get a doctor's note I know I will be fine. However, I also know that if I have a formal diagnosis they will order special food and do everything in their power to make it work. Pretty much my options are to get the note and to make sure I will have lots of food that I can eat, not get the note and see what they can do without it, or just use all of my meals to by coffee, fruit, veggies, and other safe snacks, while cooking for myself. When the worst case scenario is that I will have to buy lattes every day, it really isn't that bad of a choice.

[mouse]

Ursinus is a small campus and I am sure they will accomadate you. I would ask the doctors' for a letter saying gluten intolerant. You have shown improvement on the diet and they should not balk at giving you the letter.

My brother graduated from that college in the early 60's. Have not heard that name for so long. It has such a lovely campus.