What to do about health care professionals who don’t listen

[Guest]

Hello, I’ve been on my celiac diagnose journey for a year now, which has been difficult without insurance. About 6 years ago I started getting really sick out of no where other than the stomach problems I’ve had since I was young. I ended up getting staph infections and cellulitis twice. Each time a nurse would tell me to get checked for HIV. I have been check for HIV multiple times and it always comes back negative, I’m also an avid blood donor but haven’t been able to go due to being sick all the time. 
 

About a year ago I ran across a friend who was diagnosed with cealic and we compared our symptoms and it sounded to me that I should be checked for the condition. I was supposed to get a skin biopsy for my leg where I had a suspicious rash I’ve had since I was teenager and was told it was varicose veins without any testing. But I didn’t have insurance and decided against pushing for help for the time being.
 

Everytime I go to the doctors im told I just have depression, but I’ve had depression my whole life mixed with aniexty. This is somthing more. Everytime I eat gluten I have severe diarrhea, and feel groggy. I get irritated and angry with the people I love. My rash gets worse. So I decided to go online and order my own IGA Antibody test a year ago just for the heck of it and it came back positive. When I explain this to medical professionals they write me off and treat me like I’m lying and bring up HIV again. Even tho I’m constantly testing. It has caused a fear of HIV in me to where I think I have it even though I do not. Has anyone else experienced something similar? I understand other things can cause a false positive for the IGA gluten antibody test, but I can’t even get someone to listen to me for a second. I have a hard time talking to doctors and nurses now because I just see them as judgmental and have had nurses say some out of place things to me. I’m a very shy person and have a hard time advocating for my health because I feel I just shut down after being told it’s just my period or depression. 

[McNish]

I would ask your PCP for a gastro referral - if you need one.   Do a little research in looking for one that specializes in Celiac in your area.   And even then it might take a few tries to find the "right" Gastro.   My 1st gastro didn't help at all - he tested me for Celiac but I had already been gluten-free due to Hashimoto - still was allowing cross contamination.  I also had a hard time with my PCP about Celiac - telling me I was intolerant just like her.  She tested me after 2 weeks of gluten.  After self testing for Celiac genes, I finally  found an amazing gastro who specializes in Celiac & he got it.  He listened and it made ALL the difference in the world.  My symptoms (occasional rash on my fingers, all the fun intestinal stuff, brain fog, wonky periods, anemia, canker sores, achy joints to the point I would cry when I walked & many more, w) were not "all in my head".  

You really need to be your own advocate because no one else will.  You know how you feel!  And take your test results with you to any gastro appt.   

If you need an official DX - see a gastro.  If you don't need that DX and you know you feel much better off gluten - why torture yourself.  Go Gluten Free.    

[knitty kitty]

You're in good company Guest!  

My doctors laughed at me when I suggested Celiac Disease.  When I was suffering from nutritional deficiencies, instead of diagnosing life-threatening Pellagra and Wernicke's Encephalopathy, they said I was crazy and sent me away.  

Can you visit the doctor that diagnosed your friend?

Have you had an at home genetic test for Celiac genes?  Perhaps a doctor will make a Celiac diagnosis with your Celiac genes, positive antibody test and improvement on a gluten free diet. 

If you do go to a doctor or enterologist, you will need to do a gluten challenge for several weeks to produce the antibodies and intestinal damage considered "the gold standard" of Celiac diagnosis.  Many people who have  gone gluten free have a more extreme reaction when resuming eating gluten.  The Hippocratic Oath says "First do no harm."  Is it really worth it? 

Nutritional deficiencies are common in Celiac Disease.  Vitamin D, B Complex, magnesium and extra Thiamine (Benfotiamine) are some of the most helpful nutrients.  Thiamine has been shown to have antiviral properties.  Thiamine also helps with anxiety and depression.  Perhaps visiting a nutritionist would be a better investment.

Keep us posted on your progress!  

[Scott Adams]

Quote

When I explain this to medical professionals they write me off and treat me like I’m lying and bring up HIV again. Even tho I’m constantly testing. It has caused a fear of HIV in me to where I think I have it even though I do not. Has anyone else experienced something similar? 

It seems very strange to me that your doctor keeps brining up HIV when you've tested negative for it--I've never heard of this before--time to get a new doctor! 

You've had a positive blood test for celiac disease, so your doctor should now be looking in the direction of repeating this test (to do so you need to be eating gluten daily for 6-8 weeks beforehand), or accepting the blood test results and scheduling an endoscopy to confirm a diagnosis of celiac disease (to do so you need to be eating gluten daily for 2-3 weeks beforehand).