Mucous Membrane Pemphigoid (gums)

[NancyKay]

Hello,

I haven't posted here in at least a year, but am now because I have a big question and concern. I have been following a faithful gluten-free diet now for at least two years after beginning to eat gluten-free and feeling so healthy. Because my saliva celiac test came back borderline, I guess I thought that at some point it might be okay to try gluten again. I discovered the awful truth this month.

I started out with a sour dough roll. Then I added a much missed item: an apple fritter. Neither seemed to bother me so I enjoyed eating a few more apple fritters over the next couple of weeks. During that time I began to get sore gums and I attributed it to some dental work I needed to get done. Well it got worse. I've been twice now to the periodontist. A biopsy came back positive for Mucous Membrane Pemphigoid and I've got an appointment with a specialist next week for treatment. MMP is an autoimmune disease of the mucous membranes and it can affect any part of the body that has mucous membranes: eyes, mouth, nose, digestive tract, anus. Sound familiar?

It occurred to me today when I got my biopsy results that this all started with the gluten about a month and a half ago and that it might all be related. I called my naturopath and told her about my diagnosis (but not that I had eaten gluten). She is giving me some remedies for my gums. She said that this was all related to celiac and to stay off gluten completely. (she underlined, asterisked and emphasized.)

Has anyone else here had infected gums, gum disease or gotten a diagnosis of MMP?

Thank you so much ahead of time for your comments.

Nancy, who has learned a big lesson

[Guest Jemenii36]

Nancy-

I just notices your post now, however I realized you posted quite awhile ago. My mother has the same problem. Her muscous membranes were sore for many many years and no one knew what was wrong with her, until last year when she was diagnosed with celiac disease. She now is doing much better, however, after being ill for so many years, one could imagine it takes its toll on the body. She is still recovering and will be a bit, if ever, she is 100% better...she still has yet to find others like her....so i am very excited to see your post!

[Guest Jemenii36]

Hi, this is the mom of Jemenii36. This evening my daughter showed your post to me. Yes, I have had a problem with thyroid disease, thyroid cancer and a disorder of the mucous membranes for years. In fact, I have even had a problem with hearing loss and tinnitus. It was eighteen months ago when I FINALLY met a doctor who diagnosed me with Celiac disease, vitamin D deficiency and low iron. In fact, I had undiagnosed "vaginal" disorders for the last ten years. By the time I met this doctor my vagina had atrophied and was fused shut. Thankfully, she treated me and found me an excellent surgeon. Together, we have been able to make me whole again. Although there are still lingering problems, I suspect that several decades of Celiac disease will not be eradicated in eighteen months. I wish the best for you and hope you find a doctor who will have your best interest at heart. If anyone else has experienced any of these problems please respond!