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Old Mon Jun 20, 2011, 07:59 AM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,407
Quote:
Originally Posted by Laura View Post
Hi Marlene,
Thanks for all the great ideas, as usual, you are a wealth of information!

Thankfully (well not really, but yes) my brother just got dx with Celiac disease about 6 months ago, so I am a little knowledgeable of all the hidden gluten...and I can always ask him

If you have a list of hidden items of lactose or gluten let me know...

Mayo has tons of pharmacies...I always go to the same one and they know me well. I call and they know me without me having to give my name I called and asked them about the medications and they looked them all up. The majority of my meds have lactose in them...generic we might we able to work around...the name brand obviously we can't...I was thinking that taking Lactaid with them would be okay? Going to email DF and ask!

Laura
Well that't interesting about your brother.....Celiac does run in families. Thinking was that those with Irish decent were more likely to have problems with Celiac. However, more varied cultural backgrounds seem to affected also. There are lots of false negatives when testing for gluten/Celiac and many go for long time before damage sets in. Here's a link with a pretty good list on Gluten/lactose foods. It's from an Autism site but still applies.

http://www.tacanow.org/family-resour...ces-of-gluten/

Also, you should find compounding pharmacy for your meds. Check with your insurance to see what they pay and if your doc needs to write scrip specific for it. Life Extension has a mail order compounding pharmacy with some pretty good rates. You should be able to find one or two in your area also. Just google compound pharmacies.

I know all of this is a pain in the behind but it can really help you figure out how to get this monster under control.

Here's gluten/lactose free probiotic. Jarrow is very reputable brand. http://www.jarrow.com/product/535/Ja..._Allergen_Free

I'll keep an eye out for other resources.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.

Last edited by Marlene : Mon Jun 20, 2011 at 08:12 AM. Reason: Added probiotic info
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