celiac3270

Yes, that must have been the one that he didn't want me to take. I don't remember the name of the other one--the one which isn't FDA approved, but the doc. prefers and gets shipped to me through an NJ pharmacy...I'm not trying any medicines from the regular celiac dr., though, until I find out if the homeopathic remedy is working or not. I've been feeling queasy since I started taking the remedy, so I'm going to stop for a day, as directed to when I feel sick.

I just remembered this thread, so I am posting an update. Yesterday, I went to two doctors: my regular celiac doctor and the homeopathic doctor. I visited the homeopathic doctor first. He spent an hour with my mom and I and asked a lot about cravings, food likes and dislikes, and symptoms. At the end, he gave me a remedy. Oh, I asked about the gluten-free status. He said that the remedies he makes are always in cane sugar. Then, of course, the remedial ingredient is something natural, such as spider...I didn't ask what bug or whatever mine was made of . Anyway, I'm supposed to take 3 of them, twice a day. He said that there were three ways it could go: no reaction at all--which means that the dosage isn't high enough or it's the wrong remedy, getting much better--which means that the dosage is right as is the remedy, or I feel worse, which is fine cause the idea is that I'd get some symptoms, but then I'd get better than I was before--kind of like when you work out, you break down your muscles and they get stronger--that's my analogy, anyway. I have to take it once in the morning, once in the evening and I should avoid eating or drinking anything 20 min. before and 20 min. after taking it. I had some diarrhea this morning and a bit this afternoon, which I am assuming is the remedy--my stomach is a little queasy too.....but I think the stomach might be because I've gone about a week since I got sick--I usually throw up and get abdominal pains for 24 hours every 7-10 days. Oh, he also said that if I don't feel good or am sick, I shouldn't take it until I feel better.

Later in the day, I went to the regular celiac doctor. He liked how I was doing physically -- since my last visit two months ago, I had gained 7 pounds and grown an inch! He was rather perplexed at my situation...and he prescribed a medicine to take. The homeopathic doctor said not to add any more medication, so my mom said that we're going to try the homeopathic remedy first. The regular celiac doctor wants me to try a medicine whenever I start to feel sick. He said that there's some medicine, Riddilin or something that does something similar, but he doesn't like that one because it causes irritability and some other symptoms or whatever. Instead, he told me to take this medicine that isn't FDA approved--but he's been using it for a decade on patients. It is approved in Europe and Canada, so my mom thinks it's probably safe--really inexpensive, too--99 cents per pill. I'm supposed to take one if I feel sick, then another 6 hours later. The medication does something with my stomach. See, my villi are grown back, but my stomach is really red and raw, still. The doctor also thinks, based on how my vomit looks like (according to my and my mother's account), that my food isn't being digested fast enough. Therefore, the medication the celiac dr. wants me to take sends a signal to the thing that controls how quickly your stomach digests food. It effectively "turns off" the thing that tells your stomach to slow down with digestion. Thus, my food would be digested faster and my symptoms would, he hopes, not last as long. He thinks that these symptoms are something that will take time and will go away in time, but he doesn't want me to have to suffer longer than I have to.

Thanks for answering my question and for reading this

Just coming back for a quick edit: I forgot to mention: the celiac dr. said that I don't need to worry about sugars and carbs and stuff anymore! I should still avoid acid and the sugars in fruit drinks, grapes, watermelon, etc., but I can finally eat cakes, cookies, and other stuff w/o worrying about sugar consumption! He said that the sugar wasn't about my stomach, but about bowels...since they have only been an issue because of the remedy, I can now eat somewhat normally. Thanks again for putting up with my ramblings

-celiac3270

Whether or not it's celiac, it can't hurt to try the diet. Numerous here don't know for sure that they have celiac disease, but the diet cleared up their symptoms and that's enough. Try it for a couple of months and see what happens...if you get better with the diet, then regardless of whether its celiac disease or a wheat allergy or whatever, you've discovered what is causing these symptoms----well, what FOODS and INGREDIENTS are causing the symptoms, if not the specific allergy or intolerance

Ingredient lists usually don't include those long ingredients you read on things such as toothpaste and shampoo bottles....... I can't give you an answer, but would suggest calling a company. If their product is gluten-free and it contains Disodium Guanylate or Disodium insosinate, then obviously, the ingredient (or ingredients if both are in it) is/are gluten-free.

Yes, Mariann...that was the list

There are some Clan Thompson lists, too....you can get previews, kinda, or buy the lists...updated annually.

To be honest, I don't really like using lists, so I'm not the best person to answer this. I would give you the link to the latest 50 page adobe file list...... , but I have it as a favorite place on AOL, which hasn't been working for awhile (so I'm checking by aol.com...etc.).

Oh, that's cool....I just went back to look when you mentioned that...I never thought I'd see someone I knew in there, so I didn't pay really close attention to the names ! Thanks for pointing out

I like Tinkyada the best, too......but DeBoles is good, as well...my second choice

For over a year I was the only one here gluten-free and after a little bit I started craving my food and not theirs. I am a nut about crosscomtamination. I don't let people cook for me ad if they touch my food I won't eat it.

I'm a bigger nut about cross-contamination. I have the same policy -- don't touch my food unless you've washed your hands well -- if someone's been preparing something else, such as a bagel, don't touch my stuff! I also have a policy about the floor -- gluten-free foods that fall on the floor that regular foods have fallen on aren't good. I'm even wary of people's hands after they've been eating gluten-free food--what they touch, etc.

Yay! I got a copy in the mail today of Living W/O!!!! My mom was going to get me the subscription for Christmas, but I was sifting through the mail and I accidentally came upon it... Haha...I just had to mention

Well, so far it's 7 yes, 39 no...........that's still 18% born in June... ...a rather large percentage.

I hadn't heard about salad being hard on the system, but for the time being, I'm avoiding certain fruits that are hard to digets: apples (unless u take the skin off of it), grapes, watermelon, etc. I am also avoiding acidic foods: tomatos, oranges, and most foods that contain them................if the doc. says so, it's probably true

I only eat Kinnickinick, as well. I've tried a couple brands and have tried the Ener-G tapioca loaf and the rice loaf. Then I finally tried Kinnickinick since many on the board praised it...that's the bread I eat now....

As for a pizza crust, the Chebe bread mix (not pizza crust) works best as a pizza crust. You follow instructions on what to add to the mix--then rather than making it into bread balls (which are also good), you flatten it out...really good...then add a favorite tomato sauce and Kraft cheeses -- parmesean and mozzarella....

Duncan Hines "Cream Cheese" frosting is also gluten-free....the most amazing frosting I've ever had! Everyone I know who has tried it has loved it...it doesn't actually taste like cream cheese, of course...I don't really know how to describe it. I never bothered to find out about the rest of Duncan Hines frosting or any other frosting -- I like that one flavor enough to stick with it

The cravings do subside a great deal over time. If I found out that I didn't have celiac, I'd still have a hard time eating those foods -- I've developed such a dislike for them just because I know what they've done to me.

I'm an only-celiac-in-the-family also ....as long as everyone's educated and dilligent, cross-contam. isn't too big a problem--but they have to understand and care enough to keep you safe.

Interesting! I had tried a homeopathic dr. before finding celiac and it helped with some other issues, but not my stomach pains, obviously, because I wasn't on a gluten-free diet. I stopped going to him awhile ago, but he was good! I might try going back, now...just wanted to hear if others had had success. Thanks!

-celiac3270

I can relate. I have the stomach-cramping symptoms and I once dreamt of going to a really dark restaurant with my family. They gave me a chocolate cake, told me it was gluten-free, and I ate it. Then I realized it was dumb and I wondered if I should puke it up so less gluten would get through me or just let it go. It was horrible!...and it happened only a few weeks ago, so I never would have done something like that--I was 8 months in and paranoid about gluten consumpton!

There's always a chance, I guess, if it's in the same box as the noodles, but I wash my hands after handling the cheese packets.......first complaint i've heard, too. Right now i'm trying to figure out how to get the cheese packets alone...sending e-mails.

Has anyone asked a homeopathic doctor about celiac? Are there any homeopathic remedies for this disease--not a cure, of course, but something that would ease the symptoms (abdominal pains, gas, bloating, vomiting, etc.) while my system is mending? Thanks

-celiac3270

Yes, I'll be checking my surrounding grocery stores: Gristedes, Associated, Pioneer, etc. and then I'll see where there's a Wallmart.....I don't know where there is one in the city--maybe in the suburbs...anyway, I'll report back

Yes...I saw Anne Lee (the nutritionist that works w/ Dr. Greene--he takes the patients, she helps with the diets ) when I was 2 months into the diet...she told me a couple helpful things, but on the whole, by that point there wasn't much I was unfamiliar with. Dieticians aren't as helpful as your own research, other celiacs, and the board .

Two things she did tell me that were helpful, though: V8 is gluten-free and, regardless of whether you're Jewish or not (I'm not), stock up during the Jewish holidays because the food that's kosher and doesn't contain Matzoh is gluten-free! I went to her around that time, so I got a very good chicken noodle soup...and some other stuff...in a regular grocery store with the guarantee of being gluten-free....thought I should share that cause I was intending to awhile ago and forgot.

The soup I got was from this company: Open Original Shared Link and you can get their entire gluten-free list at the link I just inserted.

-C

I love Mac n cheese....even though I make it simply using Tinkyada rice noodles and the cheese packet from Kraft.....I'm not too sophisticated when it comes to cooking so I love to be able to dump powders and mixes...lol.

I think it is good to have the alert tag. . .you never know when you may have a sudden new reaction.

Perhaps, when it comes to small children who might not know better than to accept food from a teacher, friend, or friend's parent, and for medication that a nurse or doctor might unknowingly give the child. For an aware child or an adult, however, I don't think it's a really good idea. Obviously, you know that you have celiac and that you need to be careful. The only time that you would have something administered without your control and without being able to warn the person of your celiac would be if you lost consciousness---and in that state, if medicine needs to be administered to save a live or something--gluten or not--it should be administered.

Yes ....if it's dedicated, it probably wouldn't cause a problem, but since the teflon can peel, it's probably just better to have stainless steel--and then if anyone ever accidentally uses it, you can clean it thorougly and have confidence that there's no gluten left in it.

p.s. I'm ultra-paranoid as well......more than you can imagine

Oooh...thank you! I told my mom about this and she said it might be in some weird spot, which is why we never notice it. Is it the same stuff as what's in the packet? I'll look for it

-celiac3270