Dealing With Doctors...help?

[WesternMA12]

Hello everyone,

I am a twenty year old college student and I am looking for some guidance on my next doctor's visit. Some background information: I have always been one of those people who just has a "sensitive stomach," and I used to vomit quite frequently when I was younger (the vomiting is less now, but still much more than most. And no, it is not from drinking. The first time I had a beer my freshman year I was vomiting the entire next day. From one beer). I experience all the other celiac symptoms as well as have a large rash covering both my forearms, in between both my elbows, a bit on both hips, and in between a few fingers that I strongly believe to be DH.

I had a celiac panel done and it came back normal (I had not seen the test results) my GP gave me a cream for the rash he dismissed as eczema (WITHOUT EVEN LOOKING!!!!) that burned my skin so badly I was screaming and had to get it off right away.

I went to the GI but was only able to see a nurse practitioner (GI had a family emergency). the NP was extremely rude to me and acted like I was crazy to think I had celiac. She told me celiac was "extremely rare" and that the celiac panel has 98% accuracy. She dismissed me as having IBS and I felt extremely disheartened because i was not listened to.

I have a dermatologist appointment coming up and I feel as if I am going to have a hard time advocating for myself. I am younger and to be honest this is my first appointment without my mom! (haha) I want to be heard but I fear I will turn into a rock like I did with the NP. Any advice? I'm feeling so lost, my health is deteriorating and it is affecting my ability to be social and productive. I want to feel better.

I don't understand why there is so much disbelief towards patients, especially around food issues.

Thank you!

[Dixiebell]

What might help is to have a list of questions and concerns with you so you don't get side tracked. Dr.s are good at this.

The biopsy should be performed next to a lesion. You can look this up and take the information with you.

[ravenwoodglass]

It can be tough but it can help if you keep in mind that these doctors are working for you. Do as the other poster suggested and you might find this link helpful

Open Original Shared Link

When all testing is done go ahead and give the diet a good strict try. False negatives are not uncommon at all so do go by what your body tells you on the diet.

[tarnalberry]

1) Make a list of questions and have it in your hand - not pocket/purse - when you go in.

2) Role play the scenario ahead of time - either with a friend or just in your head. Practice it before you go in! (It really does help, at a neurologic level.)

[GlutenFreeManna]

You may be able to get a diagnosis based on a biopsy of the rash. Tell them that there is DH/celiac in your family history and you want to be tested. A good dermatologist will take a sample of the skin right next to the ligions. Unfortunately many doctors and even derms are not familiar enough with celiac to do these simple tests. They still think it is "rare" because that's what they were taught eons ago in medical school. They aren't up on the latest studies estimating around 1% of the population has a problem with gluten. Another thought--Do you have insurance? It may not be just because you are young, it might also have to do with your insurance/lack of insurance and what it will cover for testing. Often if you don't have insurance or they look at you and know you are a college student they figure you are too poor to pay for testing. Many doctors don't want to do what they consider "unneccessary" testing and then later have the patient complain about the bill for testing that was negative. You are going to have to push them to do the right tests and then once the tests have been done, even if they are negative try going gluten free for a month long trial at least. You don't need a doctor to tell you to avoid gluten if it makes you sick (although I understand that it would make it easier for you, being a college student). Good Luck.

ETA: Also go back and get a copy of your blood test results that were negative so you can find out if they ran a full celiac panel, what kind of test they ran and also how "negative" it really was. It's rare,b tu I have read on this board of people being told the test was negative when it was positive and the docotr just didn't know how to read the test results. By law in the US you are entitled to a copy of your tests. You may have to pay a small photocopy fee, but they have to give you the test results for your records.

[SaraKat]

I would ask the dermatologist to biopsy the rash. I would also get a copy of the blood work, see if they tested Reticulin AB. I heard that one is usually positive for celiacs that have DH.

I had a rash behind my knees in the summer and my derm biopsied it and it was not DH, it was an eruptive syringoma. There are a lot of skin conditions out there.