celiac3270

Hi,

Welcome to the board. This is a really great spot to get support, as well as build on your knowledge. In February of this year, on the 17th, I guess, I came here with no knowledge of celiac disease....I find it amazing to look back on how much I've learned over the months without realizing it. I'm sure you'll find the board as helpful as we all have....and maybe you'll even make a few friends here...I know many of us do. Just post your questions and we'll start answering.

-celiac3270

I don't really use lotion...don't have issues with my shampoo....use Banana Boat sunscreen.......but about the soap.

My dad travels a lot and sometimes he brings home some of the soaps from hotels if he stays at really good ones. Is this bad?.....how impt. is the soap thing? I wash my hands A LOT...I used to do it because I thought that I just had a terrible immune system and washing a lot would avoid germs, thus avoid sick. Since then, I'm not as crazy about washing my hands unnecessarily, but still do it a lot.....esp. with cross-contamination issues. Is soap a big issue? If so, what are some mainstream brands of soap that I could use? Thanks.

-celiac3270

I guess I'm a little over-the-top paranoid these days but I was doing so well until I got sick for days recently and still can't figure out what-from.

I think we're all paranoid about this....or at least, I am, too......but in my case because I want to feel better. I'll just try to stay healthy and if I don't get better for a long time, I'll start keeping a really meticulous record of what I eat so I can analyze what foods are giving me issues. For now, I think and hope that I'm still sick from those symptoms that can continue for a year into the diet -- I've only been on the diet for 5 months....wow, I'm rambling and not even about teeth.

Anyway....toothpaste would be gluten-free (but you could bring your own, like I said)....Novocain is gluten-free...lol.....but I see your point...there're so many things that they stick in your mouth that are questionable....I mean, how do you if gauze is gluten-free or those plastic trays that they put the fluoride in?....crazy. I think ultimately there isn't much we can do about it....when my mom asked about some product at my dentist's office, she got handed a bottle so she could "read the ingredients".....with all the flavorings there was no way to tell........unfortunately, a dentist who is celiac-aware still wouldn't be as conscientious to all those potential gluten sources..............but it's a good idea of there was one.......unfortunately, I think it would be hard to find a celiac-aware dentist on the entire east coast, let alone Westchester...........sorry.

-celiac3270

I don't like that site to much because they only have a handful of states. Why are there none for each major city? I don't get why they list some for New England and nome for the NW but that't it. I am in Atlanta and know there must be some places here to eat. Maybe I will contact them directly.

I agree with Kristina on that....I am not a big fan of the site, either....even though I live in NYC, cause it doesn't list other major cities (so it's not helpful for traveling).....and I don't eat out in the city, much, anyway....I really dislike restaurants.

I can honestly say that I have a deep aversion....not quite HATE, cause it's not their fault that I have celiac disease, but a deep aversion to all restaurants...it makes me feel sick just to look at their menu....esp. the pastas and breads....yuck...so I stay away from restaurants, anyway....I never liked to eat out.

-celiac3270

I don't get a lot of headache-migraines....I had two while on vacation (lol...no, it wasn't a stressful trip )...in March of this year , but haven't had any since.

However.....

Since around birth, I've gone to the same pediatrician.....then a few years ago he switched insurance plans....and I switched doctors . I always thought he was a good doctor, but I guess, looking back, he wasn't as good as my family thought. After all, I had projectile vomiting cause of the formula I was on....and he just switched it (celiac?). Starting in first grade (maybe earlier, but I can only remember back to first grade) I had a lot of stomach cramping and vomiting and bloating...I know that was Celiac....he didn't catch it...he thought maybe it was a food allergy, but said it was expensive, and kinda dropped it. I was born two weeks late, and was a big baby (not fat, but really long and "stout", I guess you could say ). Well, over the years I didn't gain a lot of weight (celiac)....didn't catch on or recommend that I see a GI for the stomach issues.

Anyway, when we finally changed doctors cause of his insurance plans, I went to a different doctor....a much nicer guy in my opinion....who heard my symptoms and immediately suggested "Cyclic Vomiting", which is a migraine-related issue. I used to occasionally see "spots" that were kinda like flashing things and blurred my vision for a few seconds when I was sick (not continually, but every now and then I'd get them while i had the cramping and vomiting). He even showed my mom in a medical book how the symptoms of cyclic vomiting matched my celiac disease (gas, bloating, and diarrhea weren't major symptoms, so I hadn't brought them up). However, being a good doctor, he recommended that we see a GI, and recommended the actual doctor who diagnosed me....testing for allergies, celiac disease, and a couple other things with blood-work, and then following up with the biopsy.

Anyway, I've sort of rambled off my whole story here (except for my dealing with symptoms at home ), but my point is, I think migraines are a pretty common thing....if anyone else sees flashy things....spots kinda, it could be a migraine manifesting itself in a different way. I don't know if I actually have that Cyclic vomiting thing....but, anyway, it's just a comment to add to migraines. Don't rule yourself out as having migraines just because you don't get splitting headaches....it doesn't have to come in that form. I'm not sure how relevant this post is to the migraine discussion, but I hope it helps someone .

-celiac3270

Why do you need a Celiac-aware dentist? I just had a filling and I read somewhere, prior to going to the dentist, about Novocain being gluten-free . In addition, nearly all toothpastes (all?) are gluten-free, and if you want to, I'm sure your dentist would let you bring your own gluten-free toothpaste. If you say this because a dentist who deals with celiacs might know more about tooth issues that accompany celiac disease, then....well, I don't really have an answer....sorry.

-celiac3270

I agree with Richard that it would require more than 1 serving for a month....every doctor has his or her own opinion, but I think most would agree that one serving a day for a month is too little. Other than that, I don't have too much to add....except that I feel REALLY, REALLY sorry for you.

I've been gluten-free since February and my symptoms seem to be just beginning to abate (knock on wood ). Anyway, I can't imagine being on the diet for months, starting to see a little hope with symptoms, and then having to ruin it all...on purpose....all I can say is that I hope you get better soon after going gluten-free for the second time, hope that the doc. realizes that you DO have celiac disease after all this (even though you already know), and good luck in dealing with the symptoms.

-celiac3270

I can understand the pain. I've cheated many times, and always regretted it later. I've been on the gluten-free diet for 17 years. I honestly say that it was hard for me to make new friends, because when i was younger i was afraid to tell people. I didn't like being different from anyone else. I feel now that i'm am in good shape from being on the gluten-free diet. But let me tell you after 17 years i would love to be normal, even for a day without worrying about pain, i would be frist in line to get that pill.

I have never cheated, but see where you're coming from with a lot of your comments. I don't like to talk to people about it, either. I don't have problems making friends, but try to avoid food situations or talking about it.

I still wouldn't use something like that....after all, they're always finding complications or problems with drugs later on...I wouldn't want to find out 20 years later that the medicine just alleviated symptoms, and still wreaked havoc on my intestines....it seems like a risk.......anyway....I can see your point, though.

-celiac3270

do you have celiac disease? if so, you probably have DH, as well....that's what causes the itchy feeling...there's a section on it on the board

Yep...thanks Catfish....it's also nice that your recipe doesn't include weird flours that you have to buy in 50 pound sacks ....this way it's much easier to try...thank you.

-celiac3270

For plane travel I take as much of my own food as possible, and on the real long air trips I take my chances with the airplane food (being real careful to avoid gluten). From what I hear they are starting to eliminate meals on flights, so it will not seem that strange if you bring meals with you.

My dad, who travels A LOT (mostly to Europe and around US, though...sometimes to Singapore or Hong Kong, but not usually). Since I was diagnosed he's more aware about celiac disease, obviously, and he's heard people asking for their gluten-free meals.....they must be relatively accomodating on planes, then.....just a thought

-celiac3270

Okay, I'll check both sections, thank you....

Migraines.....yes, sounds familiar....they run in my family....and I have Celiac

-celiac3270

I've been....about 5 months, I guess and the doc. hasn't talked of another biopsy...I've heard of that, but I think that my doctor's going to stick with monitoring it by blood test....

I've heard of that, so I think it's just a matter of what the individual and their doctor feel is right. Some doctors might feel it necessary to do a biopsy, but mine, I think, feels that monitoring it with blood is suitable...for now, anyway

-celiac3270

Oh, well. The other thing I crave is cheesecake, since I'm also lactose intolerant. I found a good milk-free key lime pie recipe that oddly enough satisfies my cheesecake cravings. But that pasta... 

Mmmm.....ooooh....that sounds good....cheesecake!! My aunt makes an amazing cheesecake, but she'd have to adapt her recipe to make it gluten-free...I haven't had it in ages.....

-celiac3270

I go on the message board which my internet provider has and I go into the Irritable Bowel section and post messages that pretty much ask other posters if they've ever been tested for celiac and how celiac mimicks IBS/colitis. So far a few people have asked me for more info and said that they want to be tested as soon as they return to their doctor. I hope I am able to make a difference in someone's life.

Debmidge

Debmidge,

That's terriffic! Whenever I hear of people with IBS or something like that, I always think celiac disease.....though I've explained celiac disease and the gluten-free diet a zillion times, I don't think that there are too many who listen to me.... anyway, there are one or two people who identified relatives with problems that sound like celiac disease and found it interesting...especially the 1 in 150 statistic....I don't think any of them followed up on it, though. Then again, unless I was having serious issues, I don't think I'd pay too much attention, either....that's good that you are spreading the word, though....after all, you could be adding 10-20 years to the lives of multiple people who would have died of cancers...you could have saved someone from having to endure severe osteoporosis and arthritis....congratulations! Good work

-celiac3270

Hello! I used to get cravings and sometimes do when I can mell certian food. but there are many yummie treats that are glutenfree. I have always belived in the 21 days to start a habit and that works well for me with this food. Once I just keep on eating it I get used to it and next thing I know it's what I am craving. Tobe honest I cna't recall what wheatbread tastes like anymore, ha. Just keep sticking with the food, be creative, and try to enjoy it because there is a lot to like!

Good point...eating gluten-free pizza instead of the regular isn't a big deal to me when I'm at home...and I don't care about non-gluten-free pizza or crave it at all except for when I'm walking past a pizza place or I see others eating it. The same goes for everything else. Sitting here right now, I can honestly say that there is no gluten food that sounds tempting or good....but sitting next to people eating regular pizza right now would be really annoying and the pizza would be annoying ot smell and be around. Smelling it and watching others eat it is what bothers me....not thinking about it in general...and if you have a good substitute for something it's even easier...................etc.

I can still remember what regular bread, pizza, pasta, and all that other stuff taste like....pretty similar to my replacements for them ...but I don't really miss them.

There is a lot to like...it's just a matter of thinking positively and finding replacements, rather than looking at the things others can have and you can't....good points, Kristina

-celiac3270

Yep...the longer I'm on the diet, the less I like the idea of depending on a medication...even if they think it works initially, what if they found problems with it later?....celiac disease is something we can deal with w/o pills, so going against what is best for our bodies (to just avoid gluten) might not be the best solution.

I just broke 80 pounds last night! I had been close for the past two weeks, 79.0, 79.4, etc., but I hit 80 for the first time....YAY!!! Next goal is 85, then 90.....hooray! I'm happy, today!

My regular doctor thought that I had "cyclic vomiting", something that's related to migraines (and there's a history of migraines in my family). However, he still recommended that I see a GI doctor to be sure it wasn't something else....wow, I am glad that I listened to him.

The GI ran bloodtests to check for allergies and a variety of other things. I also had a sonogram thingy done and a bone density test. Bloodtests showed that I had celiac disease, but no allergies. My bone density test showed that my bones weren't as "mature" or something as they should've been -- 1-2 yrs. behind, I think. He did the biopsy to be sure...and said that I had celiac disease....so he found it really well.

He was terriffic in finding it, but I think that now he isn't that helpful....I'm going back to him for "check-ups" on the celiac disease.....but he seems to think that I am saying that everything is because of celiac disease....he thinks that symptoms like diarrhea, cramping, vomiting, etc. are not related to celiac disease and it annoys me since I know that it is -- symptoms don't always, and don't usually, leave in under 5 months ! He thinks that I'm just attributing everything to Celiac....

Helpful to diagnose, but not to cope.....

-celiac3270

Even if you're not allergic to wheat, wheat is a form of gluten, and therefore, you need to avoid it. "gluten-free" means "wheat-free, rye-free, malt-free, barley-free, etc." It is just a broad term referring to all these. You must avoid wheat....although you do not have an allergy to it, you do have a sort of intolerance to it.

I was dx'ed when I was 25, but I don't think I'd rely on a pill like that. For lactost intolerance, maybe, but for this... well, lactose doesn't cause real physical damage! It's not that hard to give up gluten, and while I would consider using it, it would only be for eating out, and I'd still try to make sensible choices on the ordering anyway.

Yep...good point.....and you can deal with celiac disease w/o medications, anyway....I don't have issues w/ the gluten-free diet, either, but am disappointed with the lunches I now get from school...in these past few months of school when I started the gluten-free diet, I get nothing but fish EVERY SINGLE DAY AT SCHOOL FOR LUNCH (you aren't supposed to bring your own) ....and I now hate seafood and can hardly eat it, anymore I can deal with that, too, though, I guess.

-celiac3270

Hello everyone, I'm 13 and pretty new on the gluten-free diet. Just wondering, I know you can't have dextrin, but what about dextrose?

Hi...I, too, am thirteen and about 5 months into the gluten-free diet.

First off, you can have dextrin...sometimes. Dextrin is often a safe ingredient in the United States, but you have to call the company...the source of it matters. Dextrin can be made of wheat, therefore, being a forbidden ingredient. However, dextrin is an ingredient of Starburst, a gluten-free candy, because in that instance, it is made of corn. So, if the dextrin is made of wheat, it's bad....corn, it's good...it depends, and you have to call the company to find out what it's derived from.

Next, dextrose is fine. It is on the safe ingredient list at Celiac.com. The ingredients can be confusing since they sound similar....and can be misleading. For example, malt is bad, and dextrin can be bad, so what a surprise when you learn that maltodextrin is fine in the US. Another is buckwheat, which, although it has the word "wheat" in it, contains no wheat whatsoever and is gluten-free.

I've been on the diet for a couple of weeks now, and I get unbelievable wheat cravings-especially when I'm around my friends and they're eating pizza or a sandwich or something along those lines. I haven't brought myself to cheat on purpose yet, but I have had some awful results after cross-contamination.

Also does anyone know if there have been any family studies regarding the genetics of celiac as I have it my daughter has it yet neither of my parents or my daughters siblings have it.

I am the only one in my family who has celiac disease. Although my mother and brother show slight signs of having it and my grandmother seemed to definitely have it based upon symptoms (she is really thin and has the worst osteoporosis her doctors have ever seen!!), blood tests revealed that nobody in my family has it....I am unconvinced, since it isn't uncommon to have a negative blood test and a positive biopsy.....anyway, according to doctors, I'm the only one in my family.

Even though I am the only one in my family who has it of the most recent three generations, my great-grandparents could have had it, or some other relative...it is genetic so there is no way that nobody throughout your entire family history has ever had it and your daughter is the first. Somebody had it, but it may have been before they even knew what it was....or it could have been a silent Celiac (no symptoms).

I don't know if they've done a study into the genetics of Celiac....they probably have but I don't know about it...

-celiac3270

I'm using Banana Boat now...used to use Coppertone, but just wanted to be extra careful, since Coppertone wasn't mentioned....no issues w/ Banana Boat...thanks again, Richard

-celiac3270