Had a really bad experience trying to schedule an appointment with a Celiac Specialist...

[Solphie]

I've been gluten free since 2011.  I grew up in poverty with poor access to healthcare, and after several years of stomach problems and health issues I decided to go gluten free, and have never looked back.  When I moved and got a good job, I got a family doctor for the first time in my life, and she was very understanding of the situation.

Recently, I moved to a new city and heard there was a group that specialises in Celiac disease here in town, so I decided to schedule an appointment.  When I called, the receptionist asked me a lot of questions and was openly skeptical and rude when I explained that I had never had blood tests or an endoscopy.  She allowed me to schedule the appointment, but now I'm questioning whether I should even go to this place, if they don't seem to take me seriously.  This can't be that rare of situation?  Does anybody have a similar experience or advice?

[cyclinglady]

30 minutes ago, Solphie said:

I've been gluten free since 2011.  I grew up in poverty with poor access to healthcare, and after several years of stomach problems and health issues I decided to go gluten free, and have never looked back.  When I moved and got a good job, I got a family doctor for the first time in my life, and she was very understanding of the situation.

Recently, I moved to a new city and heard there was a group that specialises in Celiac disease here in town, so I decided to schedule an appointment.  When I called, the receptionist asked me a lot of questions and was openly skeptical and rude when I explained that I had never had blood tests or an endoscopy.  She allowed me to schedule the appointment, but now I'm questioning whether I should even go to this place, if they don't seem to take me seriously.  This can't be that rare of situation?  Does anybody have a similar experience or advice?

Welcome to the forum!  

Is this “group” a medical center or a celiac support group?  What is your goal?  To obtain an official diagnosis or get emotional support?  I ask because in order to get an official diagnosis, you are going to have to get back on a gluten diet for a period of 8 to 12 weeks.  It is called a gluten challenge and it can very difficult and should be done under a Gastroenterologist’s (GI) care.  If intolerable, the Gastroenterologist can order an endoscopy in about two to four weeks. 

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I understand the  need for a diagnosis.  After all, we are talking  about a life-long dietary commitment.  Since I personally did not have GI symptoms at the time of my diagnosis, I needed to be sure had I had celiac disease.  I knew the gluten-free diet was restrictive and hard to learn because my husband went gluten free 12 years earlier per the poor advice of his GP and my allergist.  The gluten-free diet worked, but now he does not really know if he has celiac disease or a sensitivity.  Will other autoimmune diseases crop up?  Is he at risk for osteoporosis?  But we know that gluten affects him.  That much is very clear.   He has been gluten free for 17 years.  Who else would stay on this diet if they had any doubts?  He refuses to do a challenge, because he does not want to be sick for three months.  We like paying our bills!  ?

It comes down to your needs and wishes.  Only you can decide what is best for you!  

[Solphie]

I'm trying to get an appointment with a medical center.  I'm not concerned about a diagnosis, and nothing will force me to start eating gluten again, but I'm having a few issues that never really cleared up that could be due to nutritonal deficiencies.  I have PCOS which is responding really well to NAC supplementation, for instance, and it really got me thinking about how I've never had any kind of specialized care for my disease and how there could be other things sitting untreated. (How is my bone density, etc.)

[cyclinglady]

Consider going to that appointment.  See if the doctor is supportive or not.  Do not base your first impression on the receptionist.  If you choose to stay, mention her rudeness.  

About bone scans.  I should not have used that for an example in my reply to you.  I am sure my husband, even if he has celiac disease, has long recovered any bone loss.  In my case, I am post menopausal.  Even with good nutrition, I am never going to build bone.  I am too old!  I am holding my own though with diet and exercise!  

[RMJ]

Even though I had positive antibody tests I had a very difficult time getting my first appointment with a GI.  I also have trouble each year getting the nurse to understand that I’d like to get my blood tests BEFORE my appointment so my doctor and I can discuss the results.  My doctor is wonderful and always happy to see me.  I agree with cyclinglady, keep the appointment.