Family Of Celiacs In Denial

[Olive Oil]

Hello! This is my first time posting.

 

I have been gluten free since January of this year.  I just had my endoscopy results from November read for the first time by a doctor.  I am convinced my former doctor pretended to read my biopsy results. Anyways my new PCP said my biopsy and results on the diet should be considered a diagnosis. I also participated in 23andme and my genes seem to back that up.  So I am going to consider that case closed and myself a Celiac.  

 

The real annoying thing is several of my family members seem to have Celiac as well but won't get tested or accept it as a possibility.  My family has developed this idea that you should have digestive issues.  "It's just the way it is."     

 

My mother has sjogren's syndrome.  All of my siblings seem to have problems that sound like celiac disease.  When I saw my father last, he spent 30 minutes in the bathroom vomiting (my sister told me this was a nightly occurrence).  

 

Yesterday, my brother was going to the doctor (my former PCP, the unhelpful illiterate one) and I suggested he ask for a celiac blood test.  He did but failed to mention his digestive issues.  Because he feels they will think he is a hypochondriac and will not hear out his heart complaints.  I was hoping the fact that his sister had a diagnosis would automatically qualify him for a test.  Apparently this doctor feels the test is too expensive to just do and that he doesn't have any symptoms that substantiate it.  However, she thinks his heart issues are a potassium or magnesium deficiency....in which case he would have a symptom of celiac.

 

I feel like they have no respect for what I've been through.  They all see the same family physician that ignored my symptoms for 3.5 years.  I am supposed to go on a family trip with them soon but I don't want to hear them complain about symptoms they refuse to take care of.

 

I wish that my suffering through this disease could benefit them by receiving a diagnosis before they get as bad as I did. Has anyone else experienced this type of thing?  Any tips?  

[nvsmom]

Welcome to the board. 

 

In the past, I was like your family. In my childhood, I had been told by a doctor that it was normal for me to have stomach aches after most meals. We were a family who trusted doctors and had a 'suck it up' mentality.  The only reason I was diagnosed is because I was looking into my son's stomach issues which were similar to mine. I was just going to get him checked until a friend spoke plainly to me that I was not helping anyone by ignoring my own problems.

 

My family wa spretty ignorant when it came to food sesnsitivities. We didn't take it super seriously. Education was the key to changing that. I read a lot and passed on that knowledge. I gave them  easy to read websites and books.  I've given away a few copies of Wheat Belly too.

 

Many realtives didn't do anything about it. Most didn't get tested. A few did, and are now eating mostly gluten-free even though they had negative tests. My 70 year old mother even got tested; I sent her to the doctor with a list of tests and she now eats gluten-free - I am rather proud of her for changing after so many years.

 

I think all you can do is offer some advice (without becoming a pest) and lead by example. Unfortunately, nany will need to hit rock bottom before they change.

[GottaSki]

Many of us have dealt with this situation with family and friends.

 

Nicole is correct -- eduction is the key along with time.  Time for your health to improve, time for them to understand this isn't a passing phase or idea, time -- took some in our extended family a couple years to get that I had not been faking my flares for the past 20 years. 

 

Feeling real health for the first time in my life in my late forties makes all the nay say'rs much easier to tolerate

 

Hang in there...take care of yourself....the rest will improve OR it won't...I'm the biggest optimist in our family but do understand I can only change myself and hope for others to do the same -- well and nudge them when they seem receptive

[1desperateladysaved]

I still think about every health problem I hear about is due to celiac.  I am about l year gluten free.  People told me the above  stuff as above when my family didn't really seem to get it.  I now have it from experience.  After one year, two daughters were tested, and the tests were negative.  They are being gluten aware as they go on with their lives.  Hopefully, your family will never have to go through the severe trial that you went through to discover what is wrong.  You are the person that warned them and the person they will come to for help if they are ever diagnosed.  Get well, be ready, and wait.

 

D

[Fire Fairy]

My mom got the blood panel and it was negative but I think it was wrong. Show me a list of symptoms and complications from Celiac and my mom can check off over half. My brother as well. But now mom tested Negative that is likely subject closed. She's 76 this month and rapidly declining which is more upsetting because we have pretty good longevity in this family. (I'm trying not to freak out right now.)