Help needed not being taken seriously

Hello @szelisk and welcome to Mayo Connect. As you probably know, Mayo Connect is a group of patients, like yourself, and not medical professionals. Therefore, we cannot give medical advice or interpret scans, etc., like the one you posted.

You mentioned several diagnoses like Celiac and Microscopic Colitis. What sort of treatment are you receiving for these disorders? Is your current doctor willing to give you a referral to Mayo Clinic?

I have been on Buedesonide (sorry, spelling is probably incorrect) several times. It will stop the diarrhea while I'm on it, unfortunately, makes you extremely constipated. Then once I stop, I relapse within 1 month. I don't know if he will refer me, but I did verify my insurance will cover it without a referral. Is a referral needed to visit Mayo?

@szelisk
It is my understanding that patients can self-refer. In order to verify this (and to know if your insurance will cover any Mayo appointments), I suggest that you contact Mayo. Here is a link with information on how to schedule an appointment and to check on your insurance coverage, http://mayocl.in/1mtmR63

I look forward to hearing how you are doing. Will you post again?

Yes, I will. First thing I need to get my confidence up I will be taken seriously. Thank you again for replying, I really appreciate it!

I always feel badly when I hear people say they feel dismissed. I don't know what to say except that you can politely go to a different doctor.

Patients should feel comfortable, not stressed.

CindyC

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

Unfortunately, the GI only did a colonscopy and couldn't get any biopsy's for the small bowel. (They had a hard time getting into the small portion they did). Current plan (according to GI) wait until it get's really bad again and then do another Endoscopy and Colonscopy. I've asked my Cardiologist for a referral to another GI MD. I found out today my potassium level's are low again (so I'm not absorbing again). Also, my BP is very low (100/54) so I'm waiting to hear the next steps. Thank you for caring!

Sending a hug and hoping you will be listened to and that they will have a precise diagnostic and solution for you.

I'm confused, your post says your celiac was biopsy confirmed? That gets done with the endoscopy and multiple biopsies snips are taken from the upper small intestine. Curious, what stopped the endoscopy from being performed? Did you have blood work (IgG, IgA, + others) for celiac? It's my humble opinion, in agreement with others, you need a new GREAT doctor..any doctor who's game plan is wait until you are in more pain, is an... not a good doctor at all. Good luck with getting the answers you need.

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