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mbg98

By mbg98
in Coping with Celiac Disease

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mbg98 Contributor
mbg98
Posted

Hi everyone!

I was just diagnosed with ciliac disease and don't know where to begin! I have been reading up on the topic and have an appt with a dietician next week but I am still in shock. anyone to talk to would be nice!

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penguin Community Regular
penguin
Posted

Welcome! You're in the right place! Everyone here is so nice and so knowledgeable, you'll be an expert in no time :)

There is a person on here, Nini, that has a newbie survival kit and she'll probably email it to you if you ask real nice B)

Keep on reading and posting, you'll learn lots!

mbg98 Contributor
mbg98
Posted
  • Author
Welcome! You're in the right place! Everyone here is so nice and so knowledgeable, you'll be an expert in no time :)

There is a person on here, Nini, that has a newbie survival kit and she'll probably email it to you if you ask real nice B)

Keep on reading and posting, you'll learn lots!

Thanks any help I can get would be nice, this is a shock for me. I had gallbladder issues but they did an endoscope to make sure of no ulcers but found damage in the the small intestine, did a biopsy and was told i may have celiac and to get a blood test to confirm. They called today and said without a doubt i have Celiac disease. I have always had digestive issues but thought it was from my poor eating habits, so now I am recovering from having Gallbladder surgery and i get this news, a little shocking!

Lollie Enthusiast
Lollie
Posted

I know how you feel!!!! I had digestive issues for a long time- they always said it was ulcers or gastritis, then Christmas 2004 they removed my gall bladder...... Needless to say, I still had issues and then my husband found out about celiac, I did all the testing, and the diet confirmed it! It is so much better now for me! I hope you have as easy a time adapting as me. I had immidiate results from the diet, so I am a testiment to gluten-free!!!

I'll be happy to help in any way I can!

Lollie

jackie4 Apprentice
jackie4
Posted

You are in the right place. My daughter was diagnosed four weeks ago and I felt the same way. I got so much information and everyone is so nice that it made an overwhelming situation more manageable. She is feeling better and that makes keeping to the diet a lot easier. One tip I do have is always carry your cell phone with you when you are shopping. Since i am not 100% sure about ingredients yet , if I find an item I am not sure about I call the 800 number and ask. Then I add it to my neverending list of gluten free foods. Good luck with your visit! Jackie4

Ps. Gluten free Pantry makes an amazing brownie truffle mix and I can find it in the supermarket. I made a bunch and then cut them up and froze some. They are great!

McDougall Apprentice
McDougall
Posted
Hi everyone!

I was just diagnosed with ciliac disease and don't know where to begin! I have been reading up on the topic and have an appt with a dietician next week but I am still in shock. anyone to talk to would be nice!

The best thing is you now know why you have been sick and all you have to do is not eat gluten and you will be fine. The tough part is you need to be very careful with what you eat and how or who prepares it. Be more careful than the doc tells you. I would stay with whole foods for a while that you are 100% are safe and add foods only after you research them first. Trust yourself more than the docs and dieticians so many of them are cluless. Prepare your own food and be careful it is prepared without contamination. Don't eat out at all. Enjoy not being sick anymore the limited diet is way better than being sick and ruining your health.

Canadian Karen Community Regular
Canadian Karen
Posted

Hi! Welcome to the board!

We have all been where you are right now, in shock and not knowing what to do next. Ask questions, lots of them! Our motto here is that the only stupid question is the one not asked...... There are a bunch of really knowledgeable, helpful, supportive people here who are always willing to chime in.

Firstly, you need to get the delpi list. It is a lifesaver. It is a list of gluten free foods, medications, toiletries, etc. It is broken down into convenient categories to make it easier shopping.

Go to www.delphiforums.com. Click on the left hand side where it says "Health & Wellness". Once you do that, the first or second forum that comes up is the Celiac Support Group, click on that (at some point, you need to sign up, but it is free). Once you click on the forum, if you scroll down, you will see "Gluten Free Products List". Click on that and the list will come up in all the categories. There is also a way you can download that list too - it is a lifesaver. You will be absolutely amazed how many mainstream products are gluten free for us. Also, there are certain companies who are very celiac-friendly, meaning they will clearly list anything on their products that will harm us - Kraft is an excellent example of this - we celiacs LOVE Kraft and are very loyal to that company.

Also, it is essential you get your own toaster most importantly, but also utensils, pots, etc. Just one crumb from a regular bread toaster will make you ill. Next, do an inventory of EVERYTHING that even comes close to your lips. Make up, lip salve, medications, vitamins, supplements, over-the-counter medicines, etc. I made the mistake of eating Gas-X Chewable Tablets like candy for my gas pains, only to find out they contained gluten!!!! (The gelcaps are okay for us.....).

I know it can seem overwhelming at first, but trust me when I say that you will grow accustomed to it and it will be like second nature to you in no time, especially when you start seeing the positive results of your new diet.

Again, any questions, just ask away!

Karen

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Guhlia Rising Star
Guhlia
Posted

Celiac is a really hard thing to get used to at first, but once you've mastered the basics your new diet will be a piece of cake (gluten free cake of course). My biggest saving grace with going gluten free was the Magic Bullet. You can get them at Open Original Shared Link, eBay, Walgreens, and lots of other places. I've found so many delicious new things to make that I don't miss the gluten at all anymore. Lara Bars have been another great new discovery as they satisfy my munching urge when the sweet tooth kicks in. Once you start feeling better (I'm assuming that you got sick before you were diagnosed) everything becomes really easy. Healing is the hardest part. Don't forget that you can always turn to this board if you're having a frustrating day. The people on here are wonderful. Good luck!!!

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      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
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      By Roses8721 · Posted

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