Celiac disease?

[AutumnS]

I am new to this diagnosis. I am currently following the paleo diet and im losing weight but its a hard lifestyle to stick to. For fellow dieters with celiac disease what program/regimen do you follow?

Thanks
Autumn :)

[csoar2004]

I do not have celiac per se, but AM gluten sensitive (it makes me fat, tired, and bloated). I am a fan of the Fat Flush Plan by Ann Louise Gittleman. In the early phases, grains are removed (sprouted spelt is permitted in P2, but it's not required). IN phase 3 (maintenance) you can add back other grains (quinoa, teff, etc.). I've been in P3 for 2+ years and LOVE it! (What's not to like about wearing size 6 after years in 2x??) ;)

HTH!

[Ellen]

Hi Autumn! I am not a celiac, but I have an uncle, and two friends who are. The uncle is really bad about sticking to the diet the doctor told him to follow, but then he IS about 80, and its probably hard to change. (it is a recent diagnosis for him) One of my friends follows Atkins. The other, who actually has Crohns, which is related to Celiac, also follows Atkins. They find it makes a BIG difference in how they feel. There are some good web sites with information on Celiacs disease. Try a google search and I imagine you will find tons of information. It is hard to follow a strict diet with no gluten, but it is essential! The damage gluten does can not be undone. Hopefully, the thought of harming your gut by eating gluten is motivation to stay on the plan!

[Shalia]

Hey, I'm a Celiac that's also recently diagnosed (right about the time you posted this post!) that would love to have a diet buddy. :) Wanna chat?

I've noticed I'm losing weight just by removing gluten. (Amazing what no more Burger King and Pizza Hut will do...)

Have you found yourself acceptable alternates to glutenous food yet? I'm particularly fond of the Charlotte's bread... ;)

[MaWhit]

For fellow dieters with celiac disease what program/regimen do you follow?
I track calories and exercise. Atkins and other lower-carb plans are compatible with Celiac, but if I can lose weight and enjoy my yummy homemade breads, crackers, tortillas, muffins, etc, then I want to go that route. :)

[ggreenhouse]

I am not celiac, though I have often wondered. Certainly I am wheat intolerant. I do much better without it...terrible IBS with it...and yet I find I have hard time completely getting wheat out of my life...

Partially because I find it challenging to always plan my food in advance...it is frustrating to take food to conferences and the life...but a necessity. Otherwise, it is wheat, wheat, and wheat. I have been to a meeting where they served pasta, bread, and cookies...and a tired little salad with croutons...

So taking food wherever you go seems a necessity to me.

[walluval]

I had a pre-diagnosis of Celiac Sprue last December and have been gluten-free since Dec 17, 2006. Nearly all my symptoms have disappeared including IBS, frequent & urgent urination, swollen feet, arthritis, wheezing, and pain in my abdomen (intestines), and so many other symptoms that I didn't even know were associated with the disease.

However, I have been having a major pity-party for myself because I have had to give up most of my favorite foods -- FOR LIFE. Because of that I went on a few candy binges eating chocolate, gummy bears, Dots, and Twizzlers.

I knew I had to snap out of it and I'm now trying to stick with Neander-Thin, the Cave Man diet. I keep telling myself "It's so easy a cave-man can do it." But it's NOT easy. I keep slipping up and eating dairy. It's hard to give up dairy since I feel like I've given up so much already.

I have been thinking of going back to Atkins because at least I can have dairy. All of this back and forth dieting has caused me to gain more weight again and I am so mad at myself and my circumstances.

I'm not looking for sympathy, I just needed to vent! I will get my act together again! Spring is almost here and I always feel so much more positive about things in the Spring! :)

[Cheryl14]

Hi Val!

My future DIL has been diagnosed with Celiac Disease. After nearly seven years of all the symptoms you mentioned, she was finally diagnosed. Apparently most go undiagnosed for up to 11 YEARS! I'm sure that you know that it is really important NOT to eat foods with gluten in them because the gluten DESTROYS the villi in your intestinal tract. As bad as you may feel having to NOT eat many favorite foods, the alternative is to feel as badly as you once did before your diagnosis. You DO NOT want to go there again, do you?!!!!

My DIL and I have been finding many great recipes that use rice flour, potato starch, and tapioca flour. We haven't been too successful with making regular bread, however, but have found very excellent rice tortillas at Trader Joe's.

For me as her future MIL I am glad to be able to serve foods that she can eat that our whole family can enjoy. She's also vegetarian which makes things a bit trickier as far as variety goes, but we're working on it!

I wish you much success and want to tell you that my future DIL is now training for her first ULTRAMARATHON (100 mile run!). She's done five marathons and is now in the best shape of her life. She is off ALL medications and is symptom-free. She says that the best way to look at gluten is to see it as POISON to her system. My son, her fiance, says that since he is limiting the gluten in HIS diet (He's NOT gluten-sensitive.), he feels better on HIS longer runs. He ran his first marathon this past fall. Apparently gluten is harder for everyone to digest and gluten-free foods are easier to digest.

Cheryl

[Mel]

Hi Val,
I was diagnosed with Celiac sprue last November and so was my son. I wasn't having many symptoms, but he was very sick. We've been totally gluten free since then, and he is 100% better. Yes, the key to both living with Celiac's and losing weight in general is PLANNING. Plan, cook and carry. I Make almost everything from scratch, but if you are willing to spend a little more, there are plenty of sources of GF foods out there. I buy a lot of cereal and snacks for my son from Amazon (and if you link through 3FC, you will help support this site ;) ).

I had pretty much already given up wheat-based products and switched to healthier whole foods carbs before I was diagnosed, so it wasn't that much of a lifestyle change for me. You don't need to go carb-free, just gluten free.

My son, who at 16 loved his junk food, said something really eye-opening to me a few days ago. He was telling me about looking at a classmate eating a piece of pizza while he ate his chicken salad, and was surprised that he wasn't tempted at all. He said that knowing what it would do to him, it was as appealing as eating ashy mud.

Do you know about the Celiac Support Forum (http://www.glutenfreeforum.com/)? or the online cooking magazine Glutenfreeda.com? Neither are weightloss sites, but both are great sources of information, recipes, support, and food sources.

Why pick a weighloss plan that asks you to give up another food group if you already feel deprived? That would lead me to a pity party also. Many Celiacs can't tolerate dairy, especially while in the initial phases of healing the villi. The cells which produce lactase are located at the ends of those destroyed villi. But if eating dairy doesn't bother you, I'd pick a plan that allows you to eat it. Atkins with healthy carbs, SugarBusters, counting calories and trying to incorporate more whole foods...there are loads of different ways to eat that are sustainable for life and compatible with a Celiac diet.

Mel

[MaWhit]

Why pick a weighloss plan that asks you to give up another food group if you already feel deprived? That would lead me to a pity party also.

...there are loads of different ways to eat that are sustainable for life and compatible with a Celiac diet.


I agree completely!

[walluval]

Thank you for your posts! You have made me feel welcome and have given me some good ideas!

Dairy does bother me, but I take Lactaid tablets when I eat certain things, like ice cream or milk. Cheese doesn't have much lactose I guess because I can eat some cheese without a problem, and yogurt is okay too.

I will check out the Celiac Support forum. I need to get educated on the "do's and don'ts" of Celiac. Thank you for the link.

Also, I would like to try to make bread with other flours because, although I wouldn't eat it everyday, I would like to have a sandwich for lunch occasionally. I will probably do a lot of experimenting with recipes over the next year!

Again, thanks for the comments and links!

[Mel]

Val- I've done a lot of experimental baking trying to make sandwich bread. My conclusion is that there really is no substitue for gluten, but you can get darn close. The best investment (aside from ingredients) that I've made is the book The Gluten-Free Gourmet Bakes Bread (http://www.amazon.com/Gluten-Free-Gourmet-Bakes-Bread-Wheat-Free/dp/0805060782/ref=pd_bbs_sr_1/102-8536104-0032951?ie=UTF8&s=books&qid=1173742844&sr=8-1). Read the entire first section, don't make any substitutions until you are a pro. The bread that I most often make is based on her Cinnamon Swirl Bread on page 116, using the 4 bean flour mix. I mix up a big batch of the flour and keep it in a large container. You can get the ingredients and most health food, Whole Foods, Wild Oats or on Amazon. I was disappointed in my earliest attempts (a lot of stuff went down the garbage disposal :( ) but this book really has some very good recipes. Just don't expect sandwich bread like you buy. And everything I've made tastes better than the commercial gluten-free breads!

Good luck...feel free to PM me if you need help.

Mel

[MaWhit]

I make an awesome bread. It's pretty refined, because it's hard to use any whole grains in GF baking, but I'm happy to share the recipe. The #1 tip with GF bread-baking, IMO, is to use a bread machine.

My bread, slightly modified from a Hagman recipe:

dry ingredients
3 cups flour mix (Bob's Mill all purpose GF mix works)
2 Tbsp instant potato flakes
2.5 tsp xanthum gum
1 tsp. salt
1.5 tsp egg replacer (optional)
1/4 c. dry milk (optional) (Better Than Milk rice/soy are GF)
1/4 c. sugar
1 Tbsp yeast granules (room temperature)


wet ingredients
3 eggs (room temperature)
3 Tbsp oil (olive, canola, whatever)
1 tsp vinegar
1 Tbsp real molasses
1 2/3 c. warm water

Combine dry ingredients in a bowl. In another bowl or in bread machine pan, lightly whisk eggs (use plastic fork if using bread pan), and then add wet ingredients. Add dry ingredients to wet, and mix until barely incorporated, then put in machine and start cycle. (Most bread machines need help getting the GF batter mixed at the start for some reason.) Use the light/white setting. Enjoy.


This makes a nice brown bread.

[Mel]

:) Just shows that even with baking bread, no two answers are the same. Most of my disasters have been with a bread machine, and my successes were when I finally banished it to the back of my pantry. Maybe the particualr machine? Since with GF bread, you don't need a second rise, it's pretty simple to make without a machine.

I make my own flour mixes, but you are right about the GF breads being "not whole grained". They are also generally higher in calories than most whole wheat breads. I don't actually eat what I bake :( It's all for my son. There's no way that GF bread fits into my nutrition plan.

[harrypotterybarn]

My SIL is the Celiac queen. She's always so organized and prepared when it comes to dealing with possible gluten food situations. I've noticed she's always carrying this (http://www.triumphdining.com/) book with her when we go out. Not really any advice as far as dieting goes, but it seems like a really helpful reference to have around. And her dining out meals always seem to be some of the healthiest on the menu!

[MaWhit]

Nice resource! Thanks! I'll definitely be passing this along. (I can't believe I haven't seen it before.)

[charolastra00]

I'm working at getting a diagnosis. The more I learn about celiac disease, the more I see the symptoms of it in me. Plus, the past week I've had dermititis herpetiformis (or something that looks VERY similar to it) all over my hands which I read somewhere is almost only a symptom of celiac disease if that is in fact what it is.

Anyone else have DH? What do you do for it? I'm going out of town tomorrow for 2 weeks so I can't get to a doctor for something, and my allegra and zyrtec have done nothing for it.

[Mel]

Anyone else have DH? What do you do for it?

I don't have it, and no in my family does, but I've read a lot about it because it is a sympton of Celiac disease.

What you do for it is STOP EATING GLUTEN. Also, check your shampoo, soaps and cosmetics. Many have wheat or wheat starch. Some have oatmeal which may be cross contaminated.

I had to throw out Tresemme shampoo, and quite a lot of cosmetics. Even some lipglosses have wheat starch in them.

I'd suggest asking this question on the forum I posted above: Glutenfreeforum.org (http://www.glutenfreeforum.com/index.php?showforum=5)

Everyone over there is very friendly and many may have experience with your problem and be able to give you a better idea of how quickly it could clear up and if it really is hd.

Good luck!

Mel

[charolastra00]

I haven't knowingly eaten gluten (though it's in everything as I've found out..) since the outbreak and I don't even remember having any gluten in the day before the outbreak. I've limited it for a long time. Until it goes away though, I'm desperate for something to stop the itching and more blisters! Though I've fasted today just to see if I could cut down the outbreak, I've still gotten more blisters! Checked all my lipglosses and such too- but I could be wrong since I've only just gotten used to all the whacky words used for milk, much less gluten stuff. My worry is that it might be in my prescription anti-histimine medications (for my other allergies) but I can't stop that or I'll be covered head to toe in a rash within a day.

Thanks for the forum! I'll check it out.

[2muchbackend]

Hi all this post is a few days old but I'm now suspecting I have celiac diesease it seems to match my symptoms but my Dr thinks I have lupus I even have the lupus markers in my blood.
Can anyone tell me what tests they did to confirm the diagnosis and what kind of specialist you should see? Is it an allergist?

[harrypotterybarn]

Hi all this post is a few days old but I'm now suspecting I have celiac diesease it seems to match my symptoms but my Dr thinks I have lupus I even have the lupus markers in my blood.
Can anyone tell me what tests they did to confirm the diagnosis and what kind of specialist you should see? Is it an allergist?

2much, your doctor thinks you have lupus and hasn't sent you to a specialist yet?!? You should be seeing a rheumatologist or immunologist to get a firm diagnosis. While lupus markers don't necessarily mean you have lupus, you ought to have a blood and chemistry panel done to ensure your immune system is functioning properly. Go back and talk to your doctor and see about getting a referral. Lupus is nothing to mess around with, but it can totally be managed.

[charolastra00]

Just an update on my situation guys- my allergist highly doubts I have celiac (because I "only" have skin reactions and gas after eating bread specifically- makes me feel like he really doesn't know all too much about the disease) but told me it would be fine to try a strict gluten free diet. That's not going so well though since I got on campus yesterday and there is ABSOLUTELY nothing I could eat except for a salad with marinaded chicken which I suspect had gluten in it. No real change yet except the DH mostly went away, but that could have been due to a high dose of pregnisone.

I started asking around my family because I know it's genetic, and it turns out my dad's ENTIRE family has IBS or similar symptoms as well as unexplained rashes. I told them to bring it up with their doctors as a possibility.

[WoodLily]

I was hoping 3FC would have a forum on this subject. I think I have celiac disease since I have felt so much better after eliminating all breads and baked goods from my diet about a year ago. I went on Atkins and could not believe the difference in my digestive system. What makes me think that I have it now is that my nephew and dad were both diagnosed with celiac disease about six months ago. Since I had already eliminated most of the offending foods, I could not be tested for it. My doctor feels that I should stay on a gluten free diet based on family history and my previous symptoms. She also suggested that I need to check prescription and over-the-counter drugs.
As far as diets, Atkins and counting calories seem to be the best choices.

Woodlily