Second chance

[Jmartes71]

Hello, I'm I crazy, nieve, or atomistic? I reached out to my former pcp of 25 years on the medical app today.Reading on the National Library of Medicine 75.6  physicians don't know celiac disease.To be fair he is primary and with the lack of knowledge, I did reach out because he was my Dr for 25 years.I do prefer his app than the one I currently have that was ignite of the disability celiac circus name chaser thanks to the one that  I currently have Since May 31, 2025 to present.

[Mari]

Ijmartes71 I  son't think you are crazy by any psycoligical s=defination but you are obsessive. you may have considerable brain fog  , a problem that affects celiacs and many other people. . With this obsession you have abd being braun dogged you arw not abke to take any advice people are giving you to help you. To take advice you need to reduce your anxieties abd think more clearly. .Stop taking your herbs for at least one week because some of them will have side ellectsif you take them too long. You can add them back if you don't notice any good changes. Be more careful about being strictly gluten free.  

[Scott Adams]

It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.

[Jmartes71]

Current careteam is still up in the air about my celiac thanks to me googling "celiac specialist" what popped  up was once known as a good name hospital back in the days. I went in for answers for my declining health, it was the autoimmune part that did me in, being a former bus driver.I read that in my medical records so easily downplayed, i refused the gluten challenge! Why the hell would I eat Gluten when im Celiac coming to them for answers when my body is falling apart? Glutenfree since 1994. They did unnecessary colonoscopy KNOWING im glutenfree. A celiac specialist would know that would be pointless to do if not eating gluten and it was done!Im so angery with that hospital for not explaining celiac disease and withholding information, Downplaying my ailments , mental distress,  causing more health issues, ect. All this could have been avoided If medical records were sent, when asked, explained and done properly. Im so angery.I do have the celiac dietitian on here in June and linked her up to my current health care yesterday, fingers crossed hopefully with that, the understanding of celiac is explained it's not just a food allergy will be understood. 

[Mari]

Thanks for giving us this update, we appreciate hearing back. I th🥰ink you are on a good path forward and will learn some new things to improve your   health and keep healthy. 

[Scott Adams]

On 3/1/2026 at 3:34 AM, Jmartes71 said:

Current careteam is still up in the air about my celiac thanks to me googling "celiac specialist" what popped  up was once known as a good name hospital back in the days. I went in for answers for my declining health, it was the autoimmune part that did me in, being a former bus driver.I read that in my medical records so easily downplayed, i refused the gluten challenge! Why the hell would I eat Gluten when im Celiac coming to them for answers when my body is falling apart? Glutenfree since 1994. They did unnecessary colonoscopy KNOWING im glutenfree. A celiac specialist would know that would be pointless to do if not eating gluten and it was done!Im so angery with that hospital for not explaining celiac disease and withholding information, Downplaying my ailments , mental distress,  causing more health issues, ect. All this could have been avoided If medical records were sent, when asked, explained and done properly. Im so angery.I do have the celiac dietitian on here in June and linked her up to my current health care yesterday, fingers crossed hopefully with that, the understanding of celiac is explained it's not just a food allergy will be understood. 

I just want to mention that a colonoscopy would not be the test for celiac disease damage, was it an endoscopy? It is not unusual to do either or both tests as a long-term follow up, especially if you're having issues. I fully understand you not wanting to go through a gluten challenge, and would be curious why they would request that part of your follow up--perhaps they questioned your original diagnosis?

[Jmartes71]

Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.

[Scott Adams]

I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should be able to contact Kaiser for those records.

[Jmartes71]

Im not a doctor and my term isnt right.All I know is I had what ever lovely procedure I know I had it in down the throat and the bottom biopsy. Im tired of and not feeling well and my blood looks fabulous though STULL HLA-DQ2 Positive and past biopsy Positive. Dealing with this is literally insane im begging for help.im at the point where just what ever 

[knitty kitty]

@Jmartes71,

Have you tried a naturopathic or holistic doctor?  Some posters in the past have commented theirs were more helpful than mainstream doctors.  

[Jmartes71]

Not yet, been waisting time on western doctors. I went yesterday to my pcp thought we were on same page, I gave him the downplayed confirmed celiac medical note from bay area. As a patient I shouldn't have to Chase my medical, my medical SHOULD stick to us.Im am so exhausted and angery how medical has been, my whole way of thinking of our system is completely changed.i wish I can upload my letter from KB 

[Mari]

hi jmartes

This is a link you can click on to see a form to fill out to obtain medical records from Kaiser. If you have already submitted this form  you could send in another one. . The form asks for your MR# and please remember to put in the name you were using before you were married.     

How to Request Copies of Medical Record from Kaiser Permanente Form - Fill Out and Sign Printable PDF Template | airSlate SignNow

[knitty kitty]

@Jmartes71,

I understand how frustrated you feel.  I have been disappointed with the medical system myself.  Have you read my story in my blog?  

What can we do to help you get better?   Nutritional deficiencies are common in Celiac disease.  Have you been checked for vitamin and mineral deficiencies?  

Which supplements are you taking?