Visit the Microscopic Colitis Foundation Website
Wow - "half-life of mast cells" AND you didn't hear it here first!
Sounds like a great consult. Hopefully the insights he shared will spill over into issues other than your mouth-burning symptoms.
And I hope you're feeling much better,
Sara
Worse Dr.s appt ever!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Julie,
Kudos to your oral surgeon.
So do you plan to mention that to the confused allergist who's still relying on an obsolete knowledge base?
Tex
Kudos to your oral surgeon.
So do you plan to mention that to the confused allergist who's still relying on an obsolete knowledge base?
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.
Amen Julie - this really is a crazy journey. Bland and white seems to work for me too when things are rough. It never ceases to amaze me that I can tolerate potato chips when nothing else seems to be working. My sister gets the burning mouth pain and she believes it is from high salicylate foods - maybe she is right and that's why many bland/white foods are working for you.
Isn't is refreshing to find someone who knows about mast cells? I finally saw my new allergist and he was wonderful. He listened and was understanding and did a great job of explaining (better than Dr. Castells). He ordered a bunch of labs, talked to me about medication and gave me a sheet to give to other doctors explaining what to do AND they can call him if needed. He also wants me to call him (even at night) if I need to. WOW, I was blown away and really almost felt a little teary eyed. My flu shot was nearly 4 years ago and I have seen countless doctors since then and I feel like I have finally found the right one. For those of you in Texas his name is Henry Legere and he is in Austin.
Did your oral sugeon offer any helpful suggestions for the mouth burning?
Mary Beth
Isn't is refreshing to find someone who knows about mast cells? I finally saw my new allergist and he was wonderful. He listened and was understanding and did a great job of explaining (better than Dr. Castells). He ordered a bunch of labs, talked to me about medication and gave me a sheet to give to other doctors explaining what to do AND they can call him if needed. He also wants me to call him (even at night) if I need to. WOW, I was blown away and really almost felt a little teary eyed. My flu shot was nearly 4 years ago and I have seen countless doctors since then and I feel like I have finally found the right one. For those of you in Texas his name is Henry Legere and he is in Austin.
Did your oral sugeon offer any helpful suggestions for the mouth burning?
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Great news Mary Beth! Someone who is well informed and in your area...jackpot! Keep us posted on how things continue to go with him. I hope to hear great things!
I don't know if potato chip eating is diagnostic, but I find the exact same thing when not much else is going down. Isn't that a strange similarity? Don't know much about salicylate foods, so I'll have to look into that possibility. I do agree with your sister however, that food does play a role somehow with the mouth burning issue.
The oral surgeon gave me a steroid mouthrinse. I'm doing better now through dietary intervention, so I'm not trying the rinse at this point. However, the next time it hits, I will start using it as soon as I become symptomatic.
Did your doctor order any "new" labwork for you or was it pretty much in keeping with things that you have been tested for before?
Julie
I don't know if potato chip eating is diagnostic, but I find the exact same thing when not much else is going down. Isn't that a strange similarity? Don't know much about salicylate foods, so I'll have to look into that possibility. I do agree with your sister however, that food does play a role somehow with the mouth burning issue.
The oral surgeon gave me a steroid mouthrinse. I'm doing better now through dietary intervention, so I'm not trying the rinse at this point. However, the next time it hits, I will start using it as soon as I become symptomatic.
Did your doctor order any "new" labwork for you or was it pretty much in keeping with things that you have been tested for before?
Julie
Yes, he ordered lots of labs, some of the standard ones and then some others like ANA, catecholamines, immunoglobulins, thyroid, SPEP, UPEP, neutrophil cytoplasmic AB, and CRP. I had trouble getting a lab to do it today so will have to drive downtown one day and get it drawn.
He thinks I am undermedicating and said I could take more meds all the time (to avoid a flare) or just take more meds when I am in a flare. He understood my hesitation to take meds, which was refreshing - most of the time doctors roll their eyes when I tell them how many meds I am sensitive to. Not sure what I will do yet, but at least I will have the right meds when I need them. I will need to premedicate for things like air travel, dental procedures etc.
I agree the strict low histamine diet helps. Glad to hear your mouth is improving.
Mary Beth
He thinks I am undermedicating and said I could take more meds all the time (to avoid a flare) or just take more meds when I am in a flare. He understood my hesitation to take meds, which was refreshing - most of the time doctors roll their eyes when I tell them how many meds I am sensitive to. Not sure what I will do yet, but at least I will have the right meds when I need them. I will need to premedicate for things like air travel, dental procedures etc.
I agree the strict low histamine diet helps. Glad to hear your mouth is improving.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Mary Beth,
This is great news - I'm so glad you've found a great partner in your search for answers and health!
I'll be interested to know about your tests, and what they mean. I think it's great that he's open to your concerns about not relying heavily on meds, though he believes they are important to your toolkit. That means if you do decide to tweak your regimen, you'll have some real help.
Interesting point, about premedicating for travel, dentistry, etc. What a useful way to seize control and head a problem off at the pass, before it happens.
YAY!
Sara
This is great news - I'm so glad you've found a great partner in your search for answers and health!
I'll be interested to know about your tests, and what they mean. I think it's great that he's open to your concerns about not relying heavily on meds, though he believes they are important to your toolkit. That means if you do decide to tweak your regimen, you'll have some real help.
Interesting point, about premedicating for travel, dentistry, etc. What a useful way to seize control and head a problem off at the pass, before it happens.
YAY!
Sara