Random Thoughts

Hi... I have celiac disease as well and was just diagnosed about 5 months ago. I read your blog and just wanted to comment on it because I've been reading up on the disease quite a bit. I was told by my doctor that you have it for life and can NEVER go back to a gluten diet so I was just wondering how they came up with that (that it went away)..? I'm just really curious if you'd like to share. Thank you and have a great day!

My comment is to Leah.The reason you can never eat gluten again is because once your intestines heal if you eat gluten again you will start the reaction and damage all over again. I have been on the gluten free diet for about 6 months now and if I eat gluten on accident (or on purpose) my reaction is 10 times worse than it ever was before!!It sucks, but you are worth it!

My name is Heather and I am 34 years old. I just found out through a GI specialist that I may have a sensitivity to gluten products. The doctor wants me to go on a gluten free diet for 6 weeks, and see if it helps my symptoms. I am scheduled to meet with a nutritionist - but they can not meet with me until the 2nd week of December. I want to try to omit the gluten before then. I have found a lot of helpful sites online, but wonder if anyone has found anything that has been real useful for them. I know changing my eating habits at this age is going to be something I am going to really have to work at.

Hi

I was diagnosed last week as a side 'benefit' to having Lupus. This is a difficult time of year to change your food intake. I hope to find suggestions for holiday cooking.

Leah,

It didn't really go away, I just ignored the symptoms, when I hit about age 12 the symptoms weren't as bad as when I was a child. So I started eating the good stuff. The lady I talked to in Walmart said her daughter went through the same thing, its not that it goes away, its just that the person adapts to the symptoms. Now if I eat gluten, I am doubled over in pain. and the other symptoms are 10 times worse. So now I am on a strictly gluten free diet.

Heather,

I know for you it is going to be hard to switch your diet. It was extremely hard for me, especially with the holiday season being here. pumpkin pie is my favorite, and I love pie crust, So it has been really hard to just eat the pie filling. But I am being strong. There is a lot of stuff out there now, that wasn't out when I was a child. I don't know where you are from but here in North Carolina they have a health food store that sells gluten-free noodles, bread, pizzas, and all sorts of stuff. If you are in a state that has Fred Meyers, They have a lot of stuff too. I hope that helps.

Jodi

Jodi, I read your comment on how you miss pie crusts and that it is hard to just eat the pie filling. I can understand that! However, over thanksgiving I found a bit of a different route instead of just eating the pie filling. I bought a bag of gluten free cookies and tossed them into the food processor and I then added melted butter to help moisten it. Once you chop it up to as small as you want you can then shape the mixture into a pie tin or cake pan and form it as a crust. (The melted butter helps to moisten it and shape the mixture.) I then added my pie filling and baked it. It's no pie crust but it sure does taste good, instead of just plane pie filling! I'm going to make chocolate pies over Christmas! Jessi

I have been gluten-free since May '07 and my daughter has been since Oct. '07. I thought celiac was an allergy so we went to a naturalist back in 2000 when we were both diagnosed, and we ate 'normal' foods-BUT come to find out that celiac is a disease not even close to an allergy. So this year we both strictly went back to the diet and We will NEVER go back to gluten again. It has been healthy and very rewarding to see my daughter gain some weight and grow. I know if it does not say gluten-free, then I will not buy it- it was probably made in a facility. It is a different way of eating but you are still the same person. So just enjoy life and remember that. Hope this helps a bit!! Julie

For Jodi and others: There are Chinese groceries in most larger cities that carry varieties of rice noodles, rice, potato, and tapioca flours. Excellent rice crackers can be found. Most of these items are considerably cheaper than at a health food store. There is a great store between Garner and Raleigh, NC. As to pie crust, after finagling with all the gluten free recipes, I finally mixed up some more or less standard gluten free flour mix, and added a tsp of Xanthan Gum per cup, and then used it in an old standard cookbook recipe for pie crust made with Crisco. It didn't take to rolling too well, but pressing it into the pie plate made as good a crust as I've ever had, and I'm old! With a bread machine, one can make much better gluten free bread than one can buy. Almost real bread! It does need a particular bread machine.

Good luck. Bob in TN

Thank you all so much for your personal stories of celiac disease and coping. I just found out I have the disease and have been struggling with my nutrition since. I hope to find good recipes and good food suggestions that taste like 'real food' since my late diagnosis (age 44).

Jessi, What kind of gluten free cookies did you use? I am going to try it out!

Julie,

When I was in school I didn't really gain weight till I was in 8th grade, when I was strictly put on the diet, my mom had found out I was sneaking cookies and stuff, anyhow to the point it is great that your daughter is gaining weight, I broke 100 lbs in 8th grade, and was 5'6. so I know how it is to be too skinny. Good luck on your Gluten free diet, I don't like calling it a diet, I call it a lifestyle, because to me that is what it is.

Hey everyone! My nephew has celiac and he is 12, he was diagnosed about six years ago. My sister has worked extremely hard to keep him gluten free and done a great job. The problem of ignorance of the public and cross cross-contamination are the hardest, not to mention he is a kid and the gluten free diet is NOT kid friendly and he also cannot eat milk or any kind so that makes many other things very difficult. SO, count your blessings, I know this is hard sometimes, but try to stay positive. keep looking on the web there are many helps here and many support groups- they are one of your keys to success! God Bless.

T.

Hi, I'm 52 years old and diagnosed myself as celiac when I was 41 or so. My uncle was diagnosed about 5 years before that, but I couldn't bear the thought of giving up wheat, so I let myself get good and sick before I 'caved' to the diagnosis. I don't like to cook, either, so I thought it was going to be torture. Now I know the real torture is being sick and tired all the time! What has worked best for me is to eat 'ethnic'. Thai, Indian, Mexican... Lots of cultures are way more rice or corn based than American food is and yummy, too. Yeah, sometimes I just want a cookie or a sandwich, but mostly I just want to feel well.... I was always hyper skinny as a kid, too, but now I have what my sister calls a 'menopot'! I'm actually having to watch my weight, a new sensation. Enjoy your new food adventure and become an educator for others who are as yet undiagnosed. Supply will arrive for demand...things have already changed dramatically in the last 11 years.

Good Luck to everyone out there who has celiac disease, It will be 2 years in April 08 for me, one of my son's just developed it as well, for the newly diagnosed, keep your faith, I promise after time it will get much better, I know from experience, I went through the tears and depression for a while, but, I am so thankful that I don't have cancer, it could be a lot worse. I actually had tumors removed, they happen to be in the same place that causes cancer in celiac, however, it never came back! this is why I never ever cheat on the diet, it is poison to your body, just look at it that way.

I was planning on getting a part for my old machine I used to use before I started the Adkins' Diet, and make gluten free bread for my husband, but maybe I should wait if it's not going to work anyway!

I just want to say thank you everyone for all the feedback!! I am getting gluten free cookbooks for Christmas so hopefully I can find some good stuff and share. Anyhow I did have a setback, see I love the Chalupas at Taco Bell, and i don't know what the breaded part is made of, but my stomach hurt after I ate it...it was soooo good though, I guess i have to work on not giving in to temptation!

Seasons greetings to celiacs the world over!!! My partner was diagnosed in June 2005 at age 47, and I got my diagnosis six months later in December 2005 (at age 42) when I also learned I have Type 1 diabetes (apparently Type 1 diabetes and celiac disease are on the same gene and co-occur quite frequently). Of course, adjusting to all of this was not easy for either of us, and frankly it did help that we both had celiac disease so we could support each other. Our first book we read, and one I STRONGLY advocate every celiac read, is called The Gluten-Free Bible by Jax Peters Lowell ... it's funny and very educational, and gave us hope. Also, The Gluten-Free Gourmet Cooks Fast & Healthy by Bette Hagman is a GREAT cookbook. I also agree with many other posts here about the major reactions after being off gluten; it seems the body adjusts to it if you get gluten all the time, but when you are off it and get some, wow!!!

The two books mentioned by Danny are excellent reads for info. and recipe ideas, and forming a new lifestyle. I'd also suggest Living Gluten Free for Dummies. Great book! I've only been diagnosed recently and am in the beginning stages of this journey. If there are any others in the WV panhandle I'd like to know. I look back on my life and see many instances of illness that were probably attributable to Celiac....wish I had known! and could have avoided so much illness. Good luck to you all!!!

Hey I have yet to have tests done to determine if I actually have Celiac, but it's all making sense. I'm 25 now and have had pain when I eat for almost 5 years. It's likely related to having celiac. I've put myself on a completely gluten-free diet and I feel great, but I can really relate to those who are just at the beginning as I'm ok when I eat at home but as soon as I go out with friends, thats when i run into problems. I look to all of the comments for added support and I thank you all for that. God Bless

-Sarah JS