celiac3270

laying on the floor or bed with my knees in my stomach, and above all praying for comfort and healing.

So glad to hear that someone else copes that way. My mom always wondered and asked me why I do that whenever I'm sick....I just said that it feels better, the abdominal pains aren't as bad....I'm so glad to hear that putting knees to the stomach is not something that only I do...

-celiac3270

I think, at least at first, it's easier to use mixes than cookbooks. It's overwhelming enough to go gluten-free and I think learning to bake from scratch gluten-free can be difficult and probably best after being on the gluten-free diet for a little while.

I agree with Kim.....mixes are really great, but also simple. I think I don't like gluten-free baking because it often requires so many ingredients that I've never heard of or don't have in the kitchen. Mixes are great cause they already put all the obscure ingredients in for you . Try Pamela's Pancake and Baking Mix....it's great....pancakes are amazing........the great thing about mixes is that all they ask for are simple ingredients such as an egg, water, oil, milk, etc.

If your entire family is going on the gluten-free diet....you should get tested now.......while the results will be accurate.

-celiac3270

Yay!

The amount of gluten intake does affect severity. Therefore, 1 unit of gluten would cause less damage and less pain than 100 units of gluten. If you are going to have other testing done: blood tests, biopsy, etc., then you should not significantly cut down on gluten....doing so could mess up your test results and show that you do not have celiac disease or make it questionable as to whether you have it or not. In the beginning of the diet, you probably won't end up eliminating all gluten......you'll find later that you made a few mistakes or didn't know about a few ingredients being bad.....at the start, I was eliminating all wheat, rye, oats, and barley, but knew nothing about malt and the uncertainty of artificial and natural flavors....therefore, I was still ingesting some gluten two weeks in.....I later realized my mistake. Cutting this short, less gluten means less damage on the intestines and usually less severity in symptoms. If you are going to have additional testing done, you should not begin cutting out gluten--rather, use this period of time as a chance to learn about what you can and can't eat....as a chance to start stocking up on gluten-free foods and buying new cooking utensils, pots, toasters, and pans to avoid contamination....etc. If your doctor chooses not to run additional tests, you should try to start the diet immediately. You may not eliminate all gluten despite your best intentions to, but you'll be doing less damage to your intestines. Good luck.....feel free to PM or e-mail me with questions or for food suggestions. This board is a terrific source of knowledge and support network....it helped me start the diet 5 months ago and cope with celiac disease since then.

-celiac3270

Lipstick can definitely be a problem....toothpaste is usually okay, but CAN contain gluten....I'd recommend calling the company.

If you have Celiac and your mom has celiac disease, then your daughter should be tested even if she had no symptoms at all......if she also has migrianes, definitely.

I saw something on ringing ears on Jessica's group....USA Silly-Yaks....maybe you could join or contact this person with a subject "Celiac Disease" or something....after all, it was asked if anyone could relate....I don't know if this is the solution, but it might help to have someone to talk to about it or compare with....hope this helps:

Subj: [uSASillyYaks] Hyperthyroidism

Oooh...I've been gluten-free for five months....and I can't imagine going back to gluten and facing more symptoms......I've been sick for two days with Celiac symptoms (not from food, just in the healing process)......a lot of vomiting, nausea, abdominal pains, no sleep, and this morning I got really dehydrated from the vomiting, which really scared me....I've been drinking non-stop, today, and I think I'm doing better.

Anyway, 9 months.....wow. I wouldn't want to go back on gluten at all after 9 months of progress.....I think that those Enterolab tests would still work....I've never tried them but many on this site have. It might be a good alternative to messing up your daughter's intestines.

Doctors have different ideas of the length of time and amount of gluten, but I think most would say 2-3 months on gluten. I think you should get about two gluten meals a day, but since the idea is to mess up the intestines and show results, it might not be a bad idea to go completely off the diet.

I'm slightly confused by your last question.....do you want something new that's gluten-free or gluten-containing? You probably wouldn't want to get her asking for something that contains gluten.....after all, that would just make the diet harder for her to follow....but you did say that you want it to be something that wouldn't contaminate the kitchen.....I guess you're trying to make the symptoms more bearable by adding good-tasting gluten foods to her diet? If it is something gluten-containing, find something that you wouldn't need to cook or bake....for example, if she likes candy, you could buy her something like "Fruit By The Foot" or "Gushers" or "Kit-Kat"s......etc. It appears that you meant something with gluten, but if you meant otherwise, please let me know....

-celiac3270

thank you, lisabarella......I knew about the Genisoy bars.......but never bothered to get a complete list...

hypocrondriac (sp?)

Hypochondriac.......close....just the "h"...I wouldn't have said anything, but I had that as a spelling word in fifth grade...only two years ago, or 2 and a half, so I still remember...lol.

Whenever I see those Zelnorm ads, I always think about celiac disease....since it's always misdiagnosed as IBS, etc. In addition, I don't take your comment about it seeming more prevalent in women offensively....based upon the migraine symptom, it would seem that way. Thank you for your thank yous . I concur...this is a terrific board........

-celiac3270

I saw a Celiac friend drinking it once......and was surprised that it was gluten-free......thanks for clarifying......is that all flavors?

-C

I can't read it....Im not registered...

Thanks, anyway.

I don't like to eat out with celiac disease either.....too bad that is own parents don't help cater to his dietary needs.... ........welcome!

-celiac3270

--

I feel like I know a lot of people on the board....after these five months...when I joined I pretty quickly learned the names of quite a few that were already here....such as Richard, Mariann, Jessica, Tiffany, Dessa, Stacie, Kristina, Kathleen.....etc. (I know I've left out quite a few).....I think it would be kind of cool if everyone posted a relatively brief description of who they are, when were they diagnosed, and anything interesting they'd like to share. I don't really know a lot of the newbies....and this would be a good place to hear everyones' stories. Although this is a good support network, it's also a place where you can make....friends sorta....and the people here are not only brains to pick at, but real people.......this doesn't have to do with celiac disease, but I think it'd be interesting to hear everyone's story and have them all together under one topic.....

-celiac3270

I agree with Jessica.....I do think that there are more and more fitness postings, but info. on good carb. foods, for example, might go under the foods, products, shopping section. Something on fatigue from celiac disease affecting sports might go under coping or post-diagnosis/recovery...........I don't think that there are enough people yet for an entire section of the forum......

Pinning a topic also shows us moderators that it's been reviewed by another moderator. Some people post multiple posts of the same information, and therefore, a moderator would move multiples posts w/ same info. to the Technical section to be deleted my Scott. Some posts are in the wrong spot, and therefore, need to be moved. Besides giving posts a permanant home, pinning shows that the topic is fine and isn't a duplicate or in the wrong section......that's kind of my take on it. Actually, it doesn't really make a difference to me in terms of posting and reading topics....I just go to "today's active topics" or else a moderator usually pins them relatively quickly..........and the word "pinned" in front of everything doesn't bother me, either.....

As I recall, the report said 100 parts per million. That's the equivalent of 3.5 ounces per 2,202.6 pounds of food consumed. Given that is 2-4 years of food for a person, I don't think it's that big.

With that statistic it sounds like less, but any amount being acceptable is still scary.

Just scared...and cautious...so I'm not going to do any experimenting with them.......no oats for me!

Now I am at the point of trying a completely gluten-free diet. (However, will 1 Krispy Kreme donut hurt me? Only ONCE in a while??)

Indeed it would! The tiniest molecule of gluten screws up your intestines so a Krispy Kreme would wreak absolute havoc. That was my first thought when I started ....when the doc. said "no wheat" I wondered if it was permittable once a year...like a slice of pizza on my birthday, or something....I researched and quickly learned that it is unacceptable....

One more thing...when you go off gluten for a period of time, your intestines heal. However, once you're gluten-free, any gluten causes more pain and symptoms than it did in the past.....your body is no longer used to it...so a piece of pizza before the gluten-free diet wouldn't cause as severe symptoms as it would having avoided it for awhile.

-celiac3270

after having bloodwork done, doctors will want you to stay on gluten so that your biopsy results are accurate. Therefore, I knew I had celiac disease after bloodwork, but stayed on gluten until after the biopsy....if I had gone off gluten, the biopsy may not have shown celiac disease or may have been more borderline....

-celiac3270

Glad to have helped, NegativeZero.

You are correct; modified food starch can be bad if it's made from wheat. It's good to be wary. Second, thanks for trying the Chebe ! I've mentioned it a lot, but I think you'll be the first to try it! As for a gluten-free brownie mix, there's no way you'd find it in a grocery store, because there are no mainstream gluten-free brownie mixes as there are potato chips.....you'll have to go to a healthfood store or order online. When I got started on the gluten-free diet, I had a celiac friend that helped me with great foods (like Chebe...I never would have found it).....friend didn't join, board, though. Anyway, I was told that Pamela's Products Ultra Chocolate Brownie Mix are MUCH better than food by george brownies and are absolutely to die for. Like the pancake mix, all the brownie mix requires is oil, water, and an egg.....for those of you with additional allergies or intolerances, I'll list the ingredients below...I haven't tried these, yet, but plan to, soon:

Flour base (brown rice flour, tapioca starch, sweet rice flour, potato starch, xanathan gum), molasses and honey, natural process cocoa powder, *Organic chocolate chunks (chocolate liquor, butter, soy Lecithin-emulsifier, Natural vanilla flavor), Natural vanilla flavor, sea salt, baking soda.

I don't make a lot of things from scratch so I don't really know about flours....buckwheat is fine, despite its name, brown rice flour (or any other rice flour), tapioca flour, potato starch........somebody else might be able to help there.

-celiac3270

A good point.....I always thought about that when I used those gloves while dissecting brains and eyes in science....yuck....not humans, though .

Anyway, my dentist doesn't use those gloves....I don't know if it would've been bad, but he doesn't use them......so in my case, it doesn't really matter, I guess.

I don't actually have depression, but before being diagnosed, I felt depressed and down all the time; the gluten-free diet actually made me feel better and happier! I can see why you wouldn't want to tell people about it, though....

I've just been invited to because people may ask questions about the bunless hotdog on my plate, etc. I haven't met my bf's family members at this reunion, and I don't want them to think I'm an invalid.

I can entirely relate to what you mean on this.......I HATE to eat out or eat differently with people other than immediate family and have to answer questions like that....it kind of makes me feel alienated, different, and as if I've got some sort of problem or I'm screwed up........I can entirely see why you wouldn't want to go to this reunion....I feel self-conscious around people even if I hardly even know them.......it must be ten times worse for you eating with people who you are consciously trying to make a good impression on.

-celiac3270

Fine.....I eat Heinz Ketchup regularly