Help needed not being taken seriously

Yes, my celiac was confirmed 25 years ago. My microscopic colitis (lymphatic) about 10 years ago. The collagianous last year. I’ve had genetic testing which shows a disposition towards Crohn’s but no confirmation yet. They did the celiac panel to make sure I was adhering to gluten free diet

Your case and my case are perfect examples of how similar and complex and dissimilar we all are. My GI(ex) told me that "there is no protocol for testing for celiac compliance ", I didn't think that was right then and now you proved it was wrong. We need to be able to trust our doctors, but I don't.

Makes me want to quit eating and only drink. I was diagnosed with celiac disease 18 years ago, I was shocked, I was and if I eat gluten now, I have no problems. My celiac disease was found by accident. My vitamin D was deficient and my PTH was high, low, erratic. So GI did the endoscopy and I had celiac and severe damage to my villi. Now 18 years later, my CIC caused a partial small bowel obstruction and a CT scan showed damage in my pancreas and that I have a redundant flexure(my large colon is extra long). The damaged pancreas led , in a roundabout way, led to elevated calcium and damage to muscles probably causing my CIC. I don't have UC, is that the reason for the lesson? What did the pathology report say about the lesion? What did your doctor say? Are you expected to continue pooping over the lesion? Gosh, just typing that word sounds excruciatingly painful AND not normal.
I am 65 and can still treated dismissively! I think I trust lawyers more than I trust drs. I have very little confidence in just about everything in our medical system. Prior to the celiac diagnosis I was told that my CIC and multiple other serious health issues were all caused by my childhood abuse. Why my PCP put that in my file I have no idea. There was nothing that could have explained her putting that in my files, cuz there was none. Some yrs later , my neurologist who gave me Botox for migraines, nearly got got his face rearranged (half kidding), when I showed him a video clip of some type of tremor/seizure that I had; he actually laughed at me, then looked at his computer screen and said " oh, I see now, that was part of your conversion disorder, due to your childhood abuse." That is a direct quote. I was so stunned, I just left his office as fast as I could. Now I know that it may have been caused by a sudden drop in my calcium levels.
Diarrhea was not my problem, but it is now. My colon will not push 💩out, the smooth muscles that perform this process are damaged due to 5-7 years of elevated calcium and Hyperparathyroidism ( has nothing to do with the thyroid glands). You might want to check it out online and see if it has any signs of being a problem for you.
I might suggest taking a trusted advocate (family, friend) to your appointments. They can help keep YOUR agenda on track, not the drs. Also, I have found that taking a notebook with questions ready and room for your friend to take notes for you is helpful. It helps me remember which questions are the most important for me and it lets the dr. know that you came prepared. Best of luck 🤞 Shelley

Hi,

From experience I can say that if one’s traumas from the past are not addressed for sure one will be sick always.

I’ve done research on this, and there’s a lot information all over the world about how psychological trauma affects health. We can’t get our adult person healthy until we get our child person healthy.

Makes me want to quit eating and only drink. I was diagnosed with celiac disease 18 years ago, I was shocked, I was and if I eat gluten now, I have no problems. My celiac disease was found by accident. My vitamin D was deficient and my PTH was high, low, erratic. So GI did the endoscopy and I had celiac and severe damage to my villi. Now 18 years later, my CIC caused a partial small bowel obstruction and a CT scan showed damage in my pancreas and that I have a redundant flexure(my large colon is extra long). The damaged pancreas led , in a roundabout way, led to elevated calcium and damage to muscles probably causing my CIC. I don't have UC, is that the reason for the lesson? What did the pathology report say about the lesion? What did your doctor say? Are you expected to continue pooping over the lesion? Gosh, just typing that word sounds excruciatingly painful AND not normal.
I am 65 and can still treated dismissively! I think I trust lawyers more than I trust drs. I have very little confidence in just about everything in our medical system. Prior to the celiac diagnosis I was told that my CIC and multiple other serious health issues were all caused by my childhood abuse. Why my PCP put that in my file I have no idea. There was nothing that could have explained her putting that in my files, cuz there was none. Some yrs later , my neurologist who gave me Botox for migraines, nearly got got his face rearranged (half kidding), when I showed him a video clip of some type of tremor/seizure that I had; he actually laughed at me, then looked at his computer screen and said " oh, I see now, that was part of your conversion disorder, due to your childhood abuse." That is a direct quote. I was so stunned, I just left his office as fast as I could. Now I know that it may have been caused by a sudden drop in my calcium levels.
Diarrhea was not my problem, but it is now. My colon will not push 💩out, the smooth muscles that perform this process are damaged due to 5-7 years of elevated calcium and Hyperparathyroidism ( has nothing to do with the thyroid glands). You might want to check it out online and see if it has any signs of being a problem for you.
I might suggest taking a trusted advocate (family, friend) to your appointments. They can help keep YOUR agenda on track, not the drs. Also, I have found that taking a notebook with questions ready and room for your friend to take notes for you is helpful. It helps me remember which questions are the most important for me and it lets the dr. know that you came prepared. Best of luck 🤞 Shelley

Hello Shellyw,
Are you stating you now eat gluten even though you have been diagnosed with celiac disease?

That looks awful .
Try to get into Mayo or any teaching hospital 🏥. Cleveland Clinic in Ohio , Johns Hopkins , MD . Many good hospitals in NYC .
Where do you live ?
I have soooooo many chronic digestive disorders daily . Ruined my life 11 years now .
I can barely eat anything. I’m so sick 🤢. I even went to Mayo in Jax 2021 for 3 big tests . Ive had over 20 tests and 7 diagnoses. 6 th Gastro Dr . No one can fix me . Nothing has helped . I feel for you .
Def get a 2 nd & 3 rd opinion.
🙏

So sorry to hear that, it’s sad seeing how many of us are silently suffering or being labeled a hypochondriac.

So sorry to hear that, it’s sad seeing how many of us are silently suffering or being labeled a hypochondriac.