<<Disclaimer: Verify this information before applying it to your situation.>>

Hi all,

this is the last of the e-mails I received.
regards,
fran

Yes, you were correct about millet and buckwheat. Go to the National Institute of Health website, search around for their info on Celiac Sprue. They will list millet and buckwheat (Kasha) as acceptable. Hospitals will trust the NIH.

I am so sorry to hear about your mother's cancer and wish her a full recovery. How odd that the blood work was negative and endoscopy positive. On the NIH site you will also find the name of the cancers associated with CD. Just check the listing against what the Oncologist says. You might also want to ask him/her about it.

My mother died of one of the cancers associate with our illness, long before I had ever heard of CD. I suspect my mother like I had CD, but we just didn't know about it. It is lucky for your mother that she has you to guide her throught the difficulties of the CD diet, particuarly as she has enough on her plate dealing with cancer right now.


Re: GF in the hospitalThe GIG (gluten intolerance group) has a special packet for hospital stays, with a letter to the dietician, doctors, etc. A friend of mine showed it to me.

Maybe you could contact them and get a packet for now & future use? If your mom has celiac & will be in & out of the hosp. for tests, procedures etc it would be good to have the hosp that she is going to educated & up to date.

We are doing the same thing at our hosp here because a fellow celiac was offered toast & crackers while they were trying to rustle up a meal tray. (She waited from 11 am till after 10 pm) They were clueless.....

Talk to the HEAD dietician, & bring literature. (GIG stuff is good)   If you or your mom ever paln to have elective surgery or overnight - talk to the dietary dept ahead of time. Bringing a cooler for in the room  is always an option too.

I've heard of many people having a "patient advocate"/fellow celiac there at meals times when you can, when a patient isn't well-emough or awake enough (post surgery, etc) to fend for themselves. A sign can be put over the bed saying no wheat, rye, barley or oats products please. It should also go down as an allergy so that the pharmacy is careful with medications you'd take by mouth while there.

I just want you to know that I have had myxoid leiomyosarcoma/reclassified after my last operation as endometrial stromal sarcoma. It started in a fibroid.
When I asked my oncologist if leaky gut could have caused this to grow, he said, "yes." So having a leaky gut until I was 38 years old could have caused poisons in my body to get into my blood. I am now 68 years old and fighting this cancer for 22 years. Could your mother not have a lymphoma but a sarcoma? or GIST? gastrointestinal stromal sarcoma in her intestines? Ask your doctor to have the slides checked and reread again for pathology.


What a woman you are! Insisting on the tests, way to go!You are correct, buckwheat is not wheat. (and she's a dietician, sad.)I would suggest carrying to the hospital dietician a packet from one of theceliac organizations: Gluten Intolerance Group, Celiac-Sprue Association, orCeliac Disease Foundation. If you join one, or all, you will get wonderfulbrochures that you can copy and give to the dietician, the doctor, andanyone else you encounter who needs to know. I believe there is also adietician organization that has much information about celiac disease.your mother is blessed with you as a daughter. (my mother also found outabout her celiac at the advanced age of 74. This discovery has given her alife such as she has never known. She has blossomed!)

I don't have the "authoritative" answers to your specific questions.However, I want to let you know that you are doing the absolute best thingfor your mother in acting as her advocate in the healthcare system.  Keepasking questions until you are completely satisfied with the answers.  Iknow from my experience in health care that people who have activelyinvolved advocates have much better outcomes.  I would suspect that if yourmother stays on a GF diet that she will feel much better overall. It's avery healthy diet, I think.  I just wanted to applaud you for your advocacyrole - it's critical these days to ensure the best possible outcome for thepatient.















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