Thank you to those of you who have sent me your celiac stories for my research!  They are all great!  I am still taking stories…so please…keep them coming!

I am requesting some more information…so you can add it to the end of your story or send it separately, but I would like to know the following:

1. What would you tell someone who was just diagnosed with celiac?
2. What is your favorite gluten free recipe?
3. What is your favorite celiac friendly restaurant?

You can send your stories and information to me at:

stories@manageceliac.com

Thanks again and KEEP ‘EM COMING!!!

Hope you have a Happy, Healthy and Gluten Free Day!!

Hey everyone!!

I need your “celiac story”.  I am working on a new article/book and want to hear your celiac trials and tribulations!!

• How did you get diagnosed?

• What problems or issues did you have getting diagnosed?

• What other medical problems do you have because of celiac?

• How does your family deal with celiac?

• How do YOU deal with celiac?

We all have problems with this disease, I want to hear about those trials and tribulations and I want to hear how you handle them.

You can email your stories to me at stories@manageceliac.com.  If I decide to use your story, I will send you a confirmation email, asking your permission to use the story and if you give me permission to use your name etc.

I can’t wait to hear all your stories!!!!

I just read an article online that really ticked me off…to no end!  Reader’s Digest has written an article telling people that if they are at dinner party and don’t want to eat the dessert…just tell them you have celiac disease or gluten intolerance to make it easier on yourself….WHAT???  They have got to be kidding me…right?

I have been dealing with celiac disease for years now and every time I go to someone’s house or out to eat, I am embarrassed to have to say “no thank you” to 90% of the items that are being served.  Not only that, but then I have to go into a huge conversation to explain why I can’t eat the food and then what would happen if I did.  It is embarrassing and it gets old…quick.  I would love to be able to go anywhere and say “yes…thank you” when someone offers me something to eat.

Reader’s Digest has just opened a whole can of worms that they are probably going to wish they didn’t.  People with celiac disease already get the eye rolls and the attitudes from people, because they think “we’re making it up” or “it’s really not that big of deal” and “we can have 1 piece…it won’t kill us”…all because the medical community won’t teach people about the disease or learn about it. This little article is just going to make it so much worse for us.

I have a question…is there a reason that people just can’t say “no thank you…I am really full” or just “no thank you”?  I don’t understand why anyone would have to say or even want to tell people they have a horrible disease or food allergy…do people think that having celiac disease or food allergies is a fun thing?

Please let me know your thoughts on this…and I hope you all have a happy and healthy day!!

Ok….so why does the FDA NOT require medication to have a notification if  it has gluten or not?  They are really slacking here!  They require that it be printed on the food nutrition label for wheat, gluten and other allergies…so how is it different for medication???  Does the FDA not realize that people can be allergic to medications too?  I, personally, am really “sick and tired” of being given a prescription and either becoming sick because of it and/or having to go through phone call after phone call to try and find out if there is gluten in the medication.  Not to mention that most of the people that you get on the phone don’t even know what gluten is, so they can’t giveyou a true answer.

There are some sites out there that have a list of the medications that they have found to be gluten free, which I have links to below.  The only problem with this though, is that it depends on the manufacturer and unless you always keep up with each individual medication, it may not always be right.  Manufacturers change their inactive ingredients and we wouldn’t know whether they did or not….until we get sick!  Plus, with medications, you may not realize that your getting gluten until a week or so down the road.  Some people assume that its a “side effect” and try to continue to take the medications and then some people may not have any symptoms show up for a few weeks…meanwhile…the whole time you have been getting “glutenized”…as I like to say.

So how do you know if it has gluten?  Good question!  Problem with this question is that the only people who truly know the answer is the guy who came up with the drug!  Most of the pharmaceutical companies don’t even know when you call, because they don’t know about the raw materials that they receive from their outside suppliers. Most pharmacists are great, but most of the time, they don’t know if it has gluten either.

You can look on the package insert or online at their “inactive ingredients”, but most of the time your not going to know what your looking at and either is the pharmacist. To start with, any starch ingredient (i.e “pregelatinized starch” or “sodium starch glycolate”) that is not labeled  as coming from a gluten-free source, for example, corn, potato, tapioca, should be avoided.  Also, other inactive ingredients that should be avoided are dextrates, dextrins, dextri-maltose, and maltodextrin.

Best thing to do is to first become best friends with your pharmacist.  They can be a real help and can sometimes make phone calls to the manufacturers for you and get information that you couldn’t.  You also want to remind your doctor when he is prescribing the medication, in case he wants to write you a second prescription, in case the first one has gluten in it.  Be ready to make lots of phone calls and try to keep your cool…I know…easier said than done!  You will be making phone calls to the manufacturers and possibly your health insurance companies, as the insurance companies may not want to pay for the gluten free prescription, because it’s usually cheaper for them for you to get the one with the gluten.  Remember to always keep up to date on the ingredients of your medications, as the manufacturer will change the ingredients, just like food items, and you won’t realize it.  And last but not least, if you are going in for any testing, where they require a contrast material, call and check ahead of time, to make sure that the dye doesn’t have any gluten.

The FDA really needs to get on the ball with this and start making the manufactures list whether there is gluten in the medications or not….as well as any other allergy, that may be in there.  If they make them list these items on food…then what is the difference in medication?

Here are some sites with information on gluten free medications:

http://www.glutenfreedrugs.com/

http://homepage.mac.com/sholland/celiac/GFmedlist.pdf

Again…I wish you all the best of the luck with this and maybe if we start making a stink about some of these issues…they will eventually get passed into law!