In 2019 diagnosed (biopsy) with Microscopic Collagenous Colitis (constipated). Changed my diet but the severe abdominal distention continued (waist went from 29" to 42" and has stayed there). Worked with numerous mainstream and alternative practitioners on food sensitivities, microbiome, SIBO etc. with no resolution just more autoimmune diseases being added. I have multiple autoimmune disease such as pulmonary sarcoidosis, macular degeneration, vagus nerve issues AND now being diagnosed with gastroparesis and more than likely Celiac disease. I am 70 years and stopped eating gluten in 2009 because of GI issues and a friend suggested that may be the culprit, helped but didn't relieve all my GI issues. Fast forward to 2023, gastroparesis has been confirmed thru the 4 hr gastric emptying test and now the GI specialist wants me to be back on gluten for 6-8 weeks so they can do endoscopy / biopsy for celiac. The blood work for the DQ2 / DQ8 genetic marker came back positive for DQ2. In the past I have refused this approach of going back on gluten for an extended just so they can do a biopsy and have an "official" diagnosis. Its my understanding nothing will change with the "treatment" of eliminating gluten. I have genetic issues with many prescribed medications (P450 : CYP2 & 3) so not on medication only when absolutely necessary and then most times I'm having to cut down the pills in half or less.
Questions:
1. Is there a rational reason why I would want to consent to be back on gluten 6-8 weeks (when right now 1 piece of regular toast puts me down for several days) just so they can get a biopsy and an "official" diagnosis of Celiac disease? Because right now, I cannot think of one and don't wish to go thru months of recovering from that amount of gluten and intake duration. Let alone the additional damage it will cause to my body systems.
2. Since 2018, I have been diagnosed with multiple autoimmune diseases. I have to made diet and life style adjustments and am overwhelmed with the it all! I am 70 years and the autoimmune issues seem to just keep adding up. My vit D and magnesium levels are perfect according to the published lab ranges. What should I be looking at to help me manage the autoimmune GI issues such as there is specialist I should consult or additional alternative treatments to consider?
Thank you so very much for being here for us!! I am just battle fatigued at this point and can use some insight and possible direction.
Dianne
MC and Gastroparesis and Celiac Disease
Moderators: Rosie, JFR, Dee, xet, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie, TooManyHats
-
Healthy2021
- Posts: 6
- Joined: Fri Mar 05, 2021 7:33 am
Re: MC and Gastroparesis and Celiac Disease
Tex I found all the posts regarding the intake of gluten for the purpose of the celiac testing so don't need any further input... I send "no thank you" in 2009 and will be giving the same response in 2023 LOL.
If you have insight on how I can handle multiple autoimmune diseases would be truly apprecitated!
If you have insight on how I can handle multiple autoimmune diseases would be truly apprecitated!
Re: MC and Gastroparesis and Celiac Disease
I'm in complete agreement with your view of this issue. The classic celiac screening blood test that doctors use to diagnose celiac disease is so insensitive that it tends to miss most cases where flattening of the VIili of the small intestine is not complete. Instead of treating patients who react to gluten, gastroenterologists continue to insist that the patient undergo the miseries of a gluten challenge (apparently they think we're just lying when we tell them that we react to gluten), just so that the gastroenterologist can chalk up another official celiac diagnosis on the charts. Or maybe they believe that patients are even dumber than gastroenterologists. Anyway, if they don't trust us, why should we trust them?
Maybe I'm looking at this wrong, but I don't care to spend my days and nights in the bathroom, for a few months, or so, just to make my gastroenterologist happy. That's not my goal. And I can't, for the life of me, comprehend why they would continue to follow such an archaic policy. Trust me, if you have the DQ2 gene, and you react to gluten, you're a celiac, whether your gastroenterologist's obsolete test verifies it, or not.
Over 20 years ago, I chose to forgo a formal celiac diagnosis, myself, after proving to myself that gluten sensitivity was the primary cause of my incessant diarrhea (I also have the DQ2 gene). And since I had MC, anyway, a celiac diagnosis was irrelevant, as far as I'm concerned, since it would have absolutely no effect on my diet, or any other behavior. Since then, even with several hospital stays, no one, not even doctors, have ever questioned my self-proclaimed celiac status. They're always willing to accommodate my diet requirements.
Re: your tendency to continue to develop autoimmune diseases, if I were in your position, I would take a very close look at my magnesium and vitamin D levels. Never base your magnesium status on a serum magnesium test. The serum magnesium test should be reserved for emergency department use, only. Always request a red blood cell (RBC) magnesium test. And make sure your level is not near the bottom of the normal range. Although the medical community appears to believe that a vitamin D level of 20 mg/dL is sufficient, and 30 mg/dL level is more than adequate, I try to keep my vitamin D level between 50 and 70 mg/dL (125—175 nmol/L).
The levels recommended by the medical community, and the government, may be sufficient for young people in good health, but they're way inadequate for preventing (or controlling) disease and infections. Without adequate levels of vitamin D and magnesium, our immune system cannot successfully ward off disease and infections, and since the immune system is entirely in charge of healing, above normal levels of vitamin D and magnesium are required in order to heal the damage caused by disease or infection.
I hope this helps.
Tex
Maybe I'm looking at this wrong, but I don't care to spend my days and nights in the bathroom, for a few months, or so, just to make my gastroenterologist happy. That's not my goal. And I can't, for the life of me, comprehend why they would continue to follow such an archaic policy. Trust me, if you have the DQ2 gene, and you react to gluten, you're a celiac, whether your gastroenterologist's obsolete test verifies it, or not.
Over 20 years ago, I chose to forgo a formal celiac diagnosis, myself, after proving to myself that gluten sensitivity was the primary cause of my incessant diarrhea (I also have the DQ2 gene). And since I had MC, anyway, a celiac diagnosis was irrelevant, as far as I'm concerned, since it would have absolutely no effect on my diet, or any other behavior. Since then, even with several hospital stays, no one, not even doctors, have ever questioned my self-proclaimed celiac status. They're always willing to accommodate my diet requirements.
Re: your tendency to continue to develop autoimmune diseases, if I were in your position, I would take a very close look at my magnesium and vitamin D levels. Never base your magnesium status on a serum magnesium test. The serum magnesium test should be reserved for emergency department use, only. Always request a red blood cell (RBC) magnesium test. And make sure your level is not near the bottom of the normal range. Although the medical community appears to believe that a vitamin D level of 20 mg/dL is sufficient, and 30 mg/dL level is more than adequate, I try to keep my vitamin D level between 50 and 70 mg/dL (125—175 nmol/L).
The levels recommended by the medical community, and the government, may be sufficient for young people in good health, but they're way inadequate for preventing (or controlling) disease and infections. Without adequate levels of vitamin D and magnesium, our immune system cannot successfully ward off disease and infections, and since the immune system is entirely in charge of healing, above normal levels of vitamin D and magnesium are required in order to heal the damage caused by disease or infection.
I hope this helps.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.