Appointment with GI tomorrow afternoon

[JLH]

OK, I'm arming myself for my GI visit. So far, I have Beth Hillson's newsletter article that Tex responded to and what she printed. I also have his entire reply he posted for the PP.

I have Dr. Polly's post to NMM re: EnteroLab and controlling her MC for almost 9 years by diet alone.

I printed out the 7 Medical Viewpoints of Understanding Gluten and Food Intolerances and Celiac Disease chart from www.glutensensitivity.net

Any other suggestions?

Thanks

[mbeezie]

Joan,

Good luck - hope he's open minded.

Yesterday I contacted a GI from Harvard Medical School/Brigham and Women's Hospital, Dr. Norton Greenberger. He works with mast cell issues. His nurse said to fax a copy of my medical records and they would decide if they would consult with me. I faxed a letter to him outlining what has happened over the last 2 years (he doesn't have my medical record yet), explaining about how my flu shot reaction created a cascade of food intolerance symptoms. He called me today! I was shocked . . . doctors never do that. He told me to get 4 tests and have the results faxed to him. He thinks it is possible I have a mast cell issue. It gave me great hope that there are compassionate doctors who take the time to listen.

Wishing you the best tomorrw Joan.

Mary Beth

[Gloria]

Good luck, Joan. I hope you make some progress, but I'm not holding my breath. Is this the same GI that you've given copy of Camryn's case?

Mary Beth,

I'm impressed that you received a phone call from a doctor who doesn't even know you! What tests does he want you to get?

Gloria

[tex]

Joan,

That's a pretty ambitious plan, (expecting your doctor to read so much "controversial" information). Also, my response to that newsletter article would likely be interpreted, (by a physician), to be disrespectful of the doctors who were quoted in the article. IMO, it's best to try to not overwhelm a doctor, with too much at one time.

Still, I have to admit that my own doctor has surprised me on numerous occasions, by stopping to read an article that I handed him, and discuss it, even though I told him that he could keep the printout, and read it whenever it was more convenient.

Good luck,
Tex

[tex]

Mary Beth,



Obviously, Dr. Greenberger is interested in learning, also. It's probably a bit tough to find good case studies, since the condition is still not very well understood, at this point.

Good luck with this - it could prove to be very enlightening.

Tex

[MaggieRedwings]

Morning Joan,

I agree with Tex that he could be overwhelmed by too much information at one time and also if he has been unresponsive in the past he just might fluff the reading off.

Mary Beth,

Congrats on finding a doc who just might listen to you.

Love, Maggie

[mbeezie]

Gloria,

He wants me to get a serum IgE, serum tryptase, 24 hour urine histamine and prostaglandin D2. From what I have been reading, I may have something called Mast Cell Activation Disorder. It could be that the number of mast cells is normal, but they "behave badly".

Mary Beth

[JLH]

She is the same woman GI that gave me so much grief about ordering the EnteroLab tests but then later on said I could be her test patient.

Yes, I gave her Camryn's Mommy's post and some other info including Dr. Liu (pediatric gastroenterologist) talking about EL genetic testing. She asked to make copies for herself but I told her the info was for her.

She was going to call one of her patients who wasn't being helped by meds and tell him/her to try going GF (soy and dairy if just gluten didn't help). I can't wait to see if he/she had improvement. Sadly, the patient sounded like an older person who couldn't use the internet.

She is the very same doctor I hugged because she was actually open and listening to me instead of rolling her eyes and saying diet has nothing to do with MC.

[Gas Bag]

That really sounds promising for you Joan, just the fact that she is listening and actually using the information to try and help other patients. Kudos to you.

Deb

[JLH]

I didn't do anything but share information I had learned and used successfully from Tex, Polly, and the Potty People.

If you had seen my original posts about my GI, you wouldn't believe it was the same person. She was absolutely not going to write me an order for EnteroLab testing which I wanted just in case insurance would cover something. (HA!) I told her I was going to do it anyway and why couldn't she just write it. Finally, she agreed to have the EL nurse call her but she gave her the same hard time. She did, eventually, write the order.

[tex]

Joan,

Each and every one of us use the information that we learn from everyone else here, so don't doubt for a second, that you've earned the rights to those kudos. What you're doing to help educate your doctor, is clearly above and beyond the call of duty.



Tex

[JLH]

Thanks. Just trying to help other sufferers of this rotten disease. It would also be nice if some of the things we (PP) know would trickle up to the major centers such as John Hopkins, Mayo, Cleveland Clinic and organizations.

Of course, Dr. Fine could help everyone out of the dark ages by publishing soon...............

[JLH]

The appointment was fine. Her patient was not at all interested in using diet to control her MC.

I told her I had been thinking about Entocort until a PP mentioned loosing hair. Doctor said it shouldn't do that and what other meds was she taking.....

At one point she said I could try a short course of Entocort. Oops.

At another, she said to keep doing the diet because there are no side effects.

I told her about the Spectra Cell test and she wants to see my results. I gave her a printout from their web site.

She wanted to make copies of the other info I brought but I said they were for her.

I told her about my toes and that maybe it was peripheral neuropathy. She said to take B-12 and I said I already was taking sublingual B-12 because of Tex.

She complimented me and I complimented her for being so open unlike the other eye rolling GI's who say diet has nothing to do with MC.

I so wanted to say something about Tex saying that maybe I was the only one in the whole world to hug my GI.

[tex]

Joan,

Well, considering that for a lot of us, just not being totally upset when we return from an appointment with our GI doc is considered to be way above par, I'd say that your appointment went pretty well.

I realize that you really don't want to take any meds, and I can appreciate that, but it bothers me that you've been on the diet for so long, without results. We hear about those who have adverse side effects from Entocort, and their words stick in our memory, (since they are more likely to respond when someone asks about side effects, and we tend to dwell on things like that, anyway), but in reality, for every one who has those side effects, there are many who do not. For many, Entocort EC is almost a miracle worker. Even if side effects should develop, they will go away, after use of the drug is discontinued. Also, for those who are able to reduce the dosage promptly, the side effect risk usually diminishes with the dosage rate. Everyone is different, so it's possible that you could start with a lower dose, and still get timely results, (of course, the higher the dose, the faster the response, typically). Please don't misunderstand me, I'm not trying to be pushy, and I certainly understand, if you absolutely don't want to use a med. I just can't forget how unpleasant and life-altering the symptoms of MC can be, and I hate to see you having to continue to deal with that, if there is any way that it could be eliminated.

Regarding the peripheral neuropathy, I'm taking the generic equivalent of this product:

http://www.metanx.com/WhatIsMetanx

It contains 833 times the RDA of B-12, 47.5 times the RDA of folic acid, and almost 17 times the RDA of B-6. It's formulated to treat peripheral neuropathy, (regardless of whether it's caused by diabetes, or something else). My PCP takes this for brain maintenance, (to improve cognitive ability). I notice that I seem to be sleeping better these days, and I no longer notice the occasional neurological symptoms, (pain, burning, etc.), in my feet, that I used to have. Also, I haven't had a single leg or foot cramp since I started taking it, and those were occasional problems, before. Of course, I can't be sure if all of those benefits are due to this stuff, since I've also started taking Azilect, (for Parkinson's), and I started taking a magnesium supplement right before I started taking this. Azilect lists sleep problems as a side effect, but it still might help, because Parkinson's interferes with the ability to reach stage IV deep sleep, so it might be helping to overcome that effect.

Tex

[JLH]

Thanks for your observations. I totally agree with you about seeing no remission after over a year of GF, SF, CF diet.

You have said, I believe, that Entocort isn't a short course drug and that concerns me. I like the idea of a lower dose. What would you suggest for that? I thought, obviously wrongly, that I might not take so long to heal because my symptoms weren't as severe as those of a lot of PP. D about 6 times a day max not the 10, 20 or even 30 times. Maybe, it was the wait before dx. I sure wish I'd kept better track of it all.

I think I'll see what the Spectra Cell tests show before I make a decision.