My Friend With celiac disease/dh

[seattlecdfriend]

My intro into all this has been over several months. The more I read the more I understand her hesitation to share how bad celiac disease complications can be. I cant totally vouch for her, but know enough that she isnt completely WF/gluten-free, but is making concerted effots.

[CarlaB]

She needs to be 100% gluten-free to get better! When you have celiac disease/dh, you cannot cheat!

It's nice that she has a friend like you who cares enough to research!!!

[seattlecdfriend]

She needs to be 100% gluten-free to get better! When you have celiac disease/dh, you cannot cheat!

It's nice that she has a friend like you who cares enough to research!!!

Thank you for that! She actually had to leave work today. I know it is harder to have celiac disease, but seeing her in pain hurts. Thanks again!

[Nantzie]

For a lot of people (me for sure) the hardest part of this is having to make a fuss about your food, or share the details of your symptoms or how strict you have to be with your food. And even the disease itself sounds like it can't be true. If you have people in your life that think you're making it up or exagerating, sometimes you just kind of give up because you don't want people to think you're lying or exagerating. A lot of people can understand not eating gluten, but don't understand or believe that if you eat a hamburger patty and just take it off the bun, you'll get just as sick as if you had just eaten the whole hamburger, bun and all.

There's also a lot to get used to just within yourself when you find out you have celiac. Sometimes you think that maybe it will be okay if you're not strict, and then you end up paying for it.

There's a lot of stuff to get used to, and we all have our bad days, and our learning curve to go through.

If she hasn't already, she should join us here. A big part of figuring this out is learning the good gluten-free products and the tricks to cooking that we've all figured out and learned about here.

[NoGluGirl]

My intro into all this has been over several months. The more I read the more I understand her hesitation to share how bad celiac disease complications can be. I cant totally vouch for her, but know enough that she isnt completely WF/gluten-free, but is making concerted effots.

Dear seattlefriend,

Celiacs need to completely avoid wheat and gluten. Major health problems and complications can result from not doing so. Gastric cancers, diabetes, anemia, and a vast array of other problems can result in those who have celiac disease who are untreated. Though I am only gluten intolerant and not celiac, I would not cause that misery on myself again willingly for anything! When you have reflux to the point you have to sleep practically sitting straight up, take two Prilosecs and Phenergan just to sleep, and cramp and bloat until you can hardly stand straight or fit in your clothes, getting rid of the gluten seems like a small problem. I have come across numerous lists of prefabricated products you can get at the regular grocery store that are safe. I was surprised at what we can eat. Among them are numerous Kraft Dressings, Dinty Moore Beef Stew, and so much more! I hope this helped.

Sincerely,

NoGluGirl

[seattlecdfriend]

CarlaB, Nantzie and NoGluGirl........

Thank you for your encouragements. Especially Nanzie for spelling out all the "fuss" you have to make when it comes to food and the disbelief part. That stuck a deep chord. Her diet is further complicated as she is a pretty strict vegetarian, so this limits her choices even further, though it has opened me up to a lot less processed meats. I've let her kow that I will probably live longer just because of that. : )

NoGlugirl; your 1st 2 sentences will help the most. Thank you. My friend is caught between her diet "limitations" and just wanting to be "normal". Thanks again.

Dear seattlefriend,

Celiacs need to completely avoid wheat and gluten. Major health problems and complications can result from not doing so. Gastric cancers, diabetes, anemia, and a vast array of other problems can result in those who have celiac disease who are untreated. Though I am only gluten intolerant and not celiac, I would not cause that misery on myself again willingly for anything! When you have reflux to the point you have to sleep practically sitting straight up, take two Prilosecs and Phenergan just to sleep, and cramp and bloat until you can hardly stand straight or fit in your clothes, getting rid of the gluten seems like a small problem. I have come across numerous lists of prefabricated products you can get at the regular grocery store that are safe. I was surprised at what we can eat. Among them are numerous Kraft Dressings, Dinty Moore Beef Stew, and so much more! I hope this helped.

Sincerely,

NoGluGirl

[NoGluGirl]

CarlaB, Nantzie and NoGluGirl........

Thank you for your encouragements. Especially Nanzie for spelling out all the "fuss" you have to make when it comes to food and the disbelief part. That stuck a deep chord. Her diet is further complicated as she is a pretty strict vegetarian, so this limits her choices even further, though it has opened me up to a lot less processed meats. I've let her kow that I will probably live longer just because of that. : )

NoGlugirl; your 1st 2 sentences will help the most. Thank you. My friend is caught between her diet "limitations" and just wanting to be "normal". Thanks again.

Dear seattlefriend,

I am glad it helped. People think we are being hypochondriacs, but they do not have to suffer like this! It is wonderful to know others go through feeling like an alien. Tell your pal I would be happy to send the URLs for the prefabricated products we are allowed. I was so hungry all the time because I could not have anything with taste, and had to make everything myself. Then I realized there are options, which also are not extremely expensive. So, I just buy what I absolutely have to at the healthfood store, and get the rest at the regular grocery. You can also get some good buys at the local Chinese market. I wanted to cry because Dad brought home Chinese food and I could live off of the stuff, and cannot have it anymore! Luckily, I can make my own. I just found out that Kari-Out company makes a low-sodium gluten free soy sauce, because the owner and his family suffer from what we do! Is that cool or what? Something else, your friend might want to avoid dairy as well. Many people who are sensitive to gluten do not tolerate casien, a protein found in dairy. I do not seem to be bothered much by dairy, but the wheat will kill me!

Sincerely,

NoGluGirl

[floridanative]

seattlecdfriend - I just wanted to say thanks for being such an awesome friend. Most of my friends have been wonderful but I don't really think they went and did research like you have. Your friend is surely lucky to have someone as supportive as you are. We should all be so lucky!

[seacdfriend]

]floridanative.. thanks for your comments. I've encountered a log-in problem with the forum, so at least for now you'll "see" me as "seacdfriend" I will have to admit I have learned quite a bit from these few postings and everyones replies- NoGluGirls especially- have sparked a bit of a fire in me. This is an incredibly unusual road for all of you to walk. I'm just trying to understand as I'm walking with my friend. We attend a rather large church here in Seattle and I began to wonder how many others there are on this same road. There are bound to be quite a few as about 5,000 people attend each Sunday, so I have some local sleuthing to do. Bye for now

seattlecdfriend - I just wanted to say thanks for being such an awesome friend. Most of my friends have been wonderful but I don't really think they went and did research like you have. Your friend is surely lucky to have someone as supportive as you are. We should all be so lucky!