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Finding a Doctor

Vasiliki

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Vasiliki Rookie
Vasiliki
Posted

Good evening, folks.

I came here a little while back and have been lurking around for a while. I am this stage still undiagnosed, but have put myself on a heavily reduced gluten diet over time and have had great success in managing my symptoms for the past year! I have an awesome boss who is a huge support for me, which helped me make a lot of changes.

Since coming here my first time, I've moved to a new city. I did travel quite a distance to go back and see my original family doctor, but upon talking about my belief of gluten sensitivity and wanting further testing, he (actually) rolled his eyes and told me that gluten intolerance is an imaginary condition and that I was wasting his time. As you can probably imagine, he is no longer my doctor.

I'm not a huge fan of doctors to begin with, so I was not in a hurry to find a new one.

Fast forward to now and the past few months, my diet has fallen somewhat to the wayside as we get closer to our wedding. Lots of people wanting to get together, eating at restaurants outside of my chosing, a lot of house parties and get togethers. And I've noticed a huge difference and return of several issues.

I feel like I've reached the point where I may want to officially go for testing now (after the wedding, in 2 weeks). However, after my last experience with discussing this with a doctor, I'm wondering how to bring this up with an entirely new doctor? One that doesn't know all of my history, or hasn't seen me through all of the things I've had issues with even since childhood. Are MDs the only ones who can order the tests needed to start the screening process?

What about Naturopaths? One of my client's works for an amazing Naturopath in the city, about a 2 hour drive from me. I've been seriously thinking about going that route.

The reason I feel I need to officially go for testing is that: a.) My symptoms after going gluten-free for almost a year and then introducing it over the past 2-3 weeks are worse than before, including increased severity of my life-long, come-and-go rash (which normally were just blisters, but tonight I noticed blisters that are bleeding on my hips, abdomen, inner arm and now a new spot, my ankles! ugh! Right before the wedding!)  b.) Several friends have decided to go gluten-free as part of a 'healthier diet', and I feel that people aren't respecting my sensitivity if I ever bring it up now. I very very rarely bring it up. I typically just say "No thanks :)" if someone offers me pizza or something c.) Part of me just feels like I know something isn't right, and hasn't been for most of my life. And combined with people using gluten-free as a diet, and then talking badly about people 'self diagnosing' or telling me 'it's all in my head'.... I just feel like I need some kind of validation that it's not in my head. That it isn't normal to have to psych myself up to go out to a restaurant with friends and put on a smile so they'll think everything is fine, because there's a good chance that later that evening I'll be curled up on my bed or the couch in pain afterwards, or spend the night in the bathroom.

But because an MD didn't give me a diagnosis, it's all 'in my head' or 'just heartburn' or I've just 'made it up'. Yet the MD won't even give me his time.

Frustration doesn't even begin to touch how I feel anymore. I'm just disheartened, you know? Like, why would I make up having an insane rash that wakes me up in the middle of the night? Or the fact I can't stay over at people's houses after a party because I don't know if I'll be in the bathroom all night.

How to you find a doctor that will listen to you? Can a Medi-Center doctor refer to a GI, or is it only family physicians? Like I said, I am willing to pay out of pocket on this one if it will give me some sense of sanity over all this.

To be honest, eating gluten-free is totally easy and I'm completely on board with that. It's eating gluten-free in front of everybody else that feels like the hardest thing in the world right now. Like I somehow have to 'prove it'? Like they expect people with Gluten intolerance to have a little club ID card I can pull out at parties that says: "Hi, I'm so-and-so and I'm actually Gluten Intolerant!"

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cyclinglady Grand Master
cyclinglady
Posted

Welcome to the forum! 

You are in a tough spot!  My advice is to do whatever it takes to comfortably get you through your wedding and then worry about getting tested.  You need to do some serious research about finding a dermatologist who can PROPERLY take a biopsy for DH.  Browse through our forum's DH section and you'll get the general idea.  This is important because many celiacs who present with DH (blistering itchy rash from Hell) often do not get a positive on the celiac blood panel.  Don't take my word for it.  I do not have DH.  My celiac disease manifests in my gut for the most part. 

Test after your wedding because to get that firm diagnosis, you're going to have to be consuming gluten for a few months (for the blood panel) maybe less for the DH biopsy IF IT IS DONE PROPERLY.  Only you can decide if getting that diagnosis is really that important. 

I understand the need to have validation.  I am formally diagnosed, but my husband is not.  He went gluten free 14 years ago per the poor advice of my allergist and his GP.  We know gluten makes him sick, but there is no way he'll do a gluten challenge.  He does say that I have received more support from medical, family and friends.  But even still it is hard and I get those "looks" about be gluten free. 

I hope your wedding is beautiful.  Enjoy and savor the day! 

RMJ Mentor
RMJ
Posted

I don't know where you live.  I was able to order my original TTG tests through mymedlab.com, but not the DGP tests.

https://www.mymedlab.com/locations

Vasiliki Rookie
Vasiliki
Posted
  • Author

Welcome to the forum! 

You are in a tough spot!  My advice is to do whatever it takes to comfortably get you through your wedding and then worry about getting tested.  You need to do some serious research about finding a dermatologist who can PROPERLY take a biopsy for DH.  Browse through our forum's DH section and you'll get the general idea.  This is important because many celiacs who present with DH (blistering itchy rash from Hell) often do not get a positive on the celiac blood panel.  Don't take my word for it.  I do not have DH.  My celiac disease manifests in my gut for the most part.

Thanks Cyclinglady for the welcome!

Yes, I've switched 100% back to what I was eating prior and have cancelled (or moved to my house ;-)) any dinner plans with relatives until W-day!

I'm so glad you pointed me in that direction. I just cruised around that section of the forum for a bit and found my way to the DH photo documentation thread. The very first image, I honestly burst into tears as I started looking through that thread. The very first image is what my hands have looked like my whole life (little itchy bumps almost all the time). They tested me for herpes because they had no idea what it was, or thought I'd touched poison oak.

I'll be doing some research and delving into things after wedding. Luckily, I know quite a few dermatologists I could get in with, haha. Skin rash and conditions all my life, all inconclusive of course.

Oh I can only imagine how it must be tricky for your husband! It's so hard for people to believe that we know our bodies enough to know when something is legitimate. Yet if word comes from an MD, it's suddenly that much more 'believable'. I can absolutely relate.

We could form a NDGI club with fancy shirts and badges. You know, make it look official. Then maybe it'll be easier for people to accept.

 

RMJ: Thanks! I'll take a look. By the way it sounds, I may go with DH testing first rather than gluten it up for a few months. It's only been 2-3 weeks and only 2-3 gluten meals a week and my rash is already nuts. I can't imagine doing every day for 2+ months, ugh

squirmingitch Veteran
squirmingitch
Posted

You have to be eating gluten for the dh biopsy so don't stop with the gluten!

Vasiliki Rookie
Vasiliki
Posted
  • Author

You have to be eating gluten for the dh biopsy so don't stop with the gluten!

I have stopped for now, as my wedding is in 2 weeks and I am not getting a biopsy done until after. I don't want the rash to end up on my face, chest and arms if I can help it! Oh that would be brutal!

After that point, I'll eat gluten again, once I can confirm there's a dermatologist who can do a biopsy :-)

cyclinglady Grand Master
cyclinglady
Posted

Enjoy your wedding and avoid gluten for the next two weeks as if it were rat poisoning!  

Do not accept that the Derm knows how to biopsy just because he says he can do it.  Ask him to explain the process to see if he/she really knows what they are doing.  Ask if they have celiac patients.  Finally, listen to your gut instinct.  I would still get the blood tests.  The cost is low.   Remember, celiac disease is a genetic autoimmune disorder, so first-degree relatives should be tested.  

 

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