nettiebeads

thanks. I bookmarked it; plan on returning to it again and again.

annette

RELAX!!!! (blame your anxieties on gluten according to another thread ) You're relatively young, I don't think you were sick that long either, (if I remember right) and you're feeling good. Focus on that. And we all have to die sometime anyhow. I plan on living long enough to be a problem to my child in my old age (hey, it's a goal), celiac or not. And those are statistics you are quoting, which in reality have nothing to do with you individually. (had to take a course on statistics. Believe it or not, I enjoyed it, but I'm weird that way). There are way way way to many variables in your own genetic makeup, coupled with your enviornment, and your own habits, to have statistics apply to you. Again, I say relax! That's really the best thing you can do for yourself, and of course stay gluten free as humanly possible. No guarantees in life anyhow, so just keep doing the best you can for yourself. K?

Annette

I don't really know myself, but other posters here have said that they have had problems with the stuff you mentioned. To me it would be playing with fire... Why take the chance? You don't need it for optimum health, and in fact it could be damaging you. When in doubt, do without.

Annette

So now I continue my quest to be gluten free, but I must admit I ate rice crispies this morning. Just a teensy bit of malt flavoring??? Maybe I should head down to the health food market and pick up some true gluten free cereals,

which brings me to another point:

These gluten free things are way too expensive! Cripes $5 for a lousy tasting loaf of rice bread. $6 for a little bag of gluten free flour for pizza crust.

You are new to this. After awhile your tastebuds "forget" what the regular wheat based products are like and so you won't be missing them like you are now. In that way it does becomes easier. I look at the cost of stuff as I'm eating this in lieu of an expensive prescription to keep my health. I mean, if I had to pay $25/month for meds that I had to have, I know I could do it. Plus my local health food store has a 10% off one day a month and that's when I try to get my largest amount of gluten-free shopping done for the month.

Yeah, as far as I know. I have hayfever and I get hives on my mouth if I eat uncooked cherries/peaches/nectarines etc, but that's it. The allergies probably go along with just have a whacked out immune system.

My immune system was funky to begin with. Certain foods and things like pollen and dust . But lately it's gotten worse. I mean more things are being added. Like now I can't have even a little red wine or champagne when before I hardly had any reactions. But so far it's not everyday common type foods; my food allergies are items that are easy to avoid. (so far)

Annette

Oh yeah! I have decided to become paranoid about gluten cross contamination. It's only my health, after all. I don't get the violently ill reactions as other do, but I can sure do without the brain fog, chronic fatigue and mood tailspins that even the littlist molecule seems to cause. No kissing hubby if he's "not safe"... I've gotten reactions from him sipping out of my cup when he's had something with gluten and then I drank out of it. Besides, better safe than sorry anyhow.

Are you now gluten free? I would recommend selinium supplement - I work with numbers all day and sometimes my brain gets "tired"; selenium seems to help. Also try L-glutamine. It's an amino acid that helps promote intestinal health which in turn helps absorption. Have you checked your toiletries and meds for hidden gluten? Maybe you haven't gotten it all out of your system. Keep us posted!

Annette

- August 2005 - saw consultant. Had an endoscopy and a colonoscopy, and then the thing where you swallow a camera in a little pill. Was told had 'slightly' abnormal villi that meant I 'either had an immediate relative with celiac disease, or I would develop celiac disease in the future at some point'. Nothing else really wrong, except the pill camera showed my upper GI processed food very, very slowly, and my lower GI processed them very, very fast. Given no idea what this meant! Diganosed as 'Post Infection Disorder IBS'. Told to eat more fibre...

-

Slightly abnormal villi... Didn't they want to know WHY???? Sheesh. Sounds like celiac to me. I suppose there are other diseases that could cause that besides celiac, but I'm putting that at the top of my list of suspect reasons. After all is said and done, try the gluten-free diet for 2 to three weeks and see how you feel. And stay away from barley and malt items too.

Annette

Knock on wood, I think that Celiac is the only thing wrong with me, physically speaking of course

- Lauren

Same here.

Annette

Deb is probably right. The gluten-free diet is just a regular diet (plenty of fruits, vegetables, meat, diary as tolerated) but without wheat, oat, barley or rye products. After his visits w/ the drs, why not have him try the diet anyhow for two weeks? It can't do any harm, plenty of us live on it just fine. Keep us posted.

Annette

Healing is very individual for everyone, just like celiac affects us all about the same, but still different. You did not say how long you had symptoms before dx; how severe and such. The tummy issues are usually the first to be resolved after going gluten-free. The others take longer. Some people don't notice much change until after 6 months or more after starting the gluten-free diet. Patience, dear. I'd give it another two weeks or more. Or it could be the cold - my lower back hurts like I'd clear cut brush for a few days whenever I get sick.

Annette

Mollie is right. What she's referring to are the Triumph dining cards. They are well worth the money, come super laminated and I keep my set in my purse so I have them with me at all times. And she's right about beef. I was out with family and I thought beef tips would be safe. Had my card and to make a long story short, the tips came premarinated so the chef could not vouch for their gluten-free status. Went with chicken. And the cards tell the chef that the grill must be cleaned before preparing our foods too. Which may or may not happen. At another restaraunt, I ordered a breakfast, omelet I believe, used the card to alert the kitchen regarding cross contamination; pancakes and french toast were also prepared on the same griddle, I got sick even though I was assured of the cooking surface being cleaned for me. Ah well. It's a gamble every time I go out, I think.

Annette

I have to agree with Vydorscope on this. My health is very important to me and I will not risk it knowingly in any way. I didn't have any symptoms while regularly ingesting cereals with malt. But was tired, brain fogged and developed peripheral neurapathies. I regularly thank God for this site since it showed me the errors of my ways and diet. The last time I got knowingly cross contaminated was when I spent the night at the hospital with my mother. Around 3:00 a.m. I was hungry so I had a two very small bites of her fruit cocktail that she had already had some of - I used a different spoon, but she had already eaten her meal (gravy or something flour based in it) then used her same spoon for the fruit cup. I suspected it would be cross contaminated, but I was so hungry... And I'm sure that the amount of gluten transferred from her spoon to the cup would have been miniscule, but I did get a really good reaction. Extreme fatigue, brain fog, aches.... The longer you are completely 100% gluten-free, the more you will be able to pinpoint the effects of gluten to your body. I don't play with dynomite or poison willingly, and to me gluten is just as dangerous.

just my opinion.

Annette

Have people found that a mere brush with gluten can have the same effects as eating food with gluten in it? For instance, would kissing someone who has just eaten gluten affect you? - or, as another user posted, using a toaster that has had regular bread in it?

For those that believe that even micro-contact with gluten can harm you, how strong would you say the effects are compared to eating a gluten food?

I can't speak for everyone, but I do know that I can't kiss my hubby after he's eaten bread or had beer. I can get cross-contaminated from that, and yes I have my own dedicated toaster. Why take chances? The severity of my reactions is in direct proportion to the amount of gluten ingested. I don't get so much intestinal issues as I used to, but the crushing fatigue and brain fog are still there. The longer you are without gluten, the more you will notice your reactions to being glutened. It will seem that you are reacting more strongly to gluten, but in fact it's because you've healed that you are able to tell the difference in your body between being gluten free to being glutened. Stay gluten-free as much as humanly possible! I guarantee you will not regret it!

Annette

From what I've read, the biopsy isn't the gold standard. And false negatives abound anyhow. I agree with your decision to try the gluten-free diet for three months. I was dx'd by diet alone 9 years ago and that was good enough for my dr then and my current dr has no problems with the fact that I've never been scoped, tested or anything. It's your body and your health; not that crappy dr's. First do no harm, but in refusing to help....I understand your frustration. I do so hope that the diet gives you the answers you need. Just beware of hidden sources of gluten and cross contamination.

Annette

Welcome to the forum and feel free to vent anytime. This is a disease that most people just don't "get" and even drs don't understand it, so how can regular lay people? It's hard to believe that a disease that can be so debilitating can be treated so effectively by diet alone. Everyone is so used to taking meds for this or that. If you had diabetes, would they react the same way? I suspect not. If they don't understand it, then YOU must be making it up.

I agree with nini in that drs have not identified all of the genes. Remember, we are a complicated organism. If you feel better on the diet, then stay on the diet. It's only your body and your health, not anybody elses. And be glad you have a very supportive DH; having one person in your corner helps a lot, I know.

Annette

There are many variable factors in each case of celiac. You didn't state how long you had had the symptoms. Everybody heals at different rates. I'm glad you're not getting worse at least. You need to not only look out for wheat, oats, rye and barley and malt in foods, you also have to look for the offending glutens in other products - meds and toiletries. Some people have had to have a course of steroids to help start the healing. Another good thing for celiacs is L-glutamine (no, not gluten in it directly) just be sure to get a gluten free bottle of it. Also, cut out diary for awhile, if you haven't already. Some people have had to go back to basics - no prepared anything from the center aisles of the grocery store, just the perimeter - meats veggies and fruits. Hope this helps and keep coming back with any questions - we're a very caring bunch and know how hard and complicating this disease can be on every day life.

Annette

Patti, please look at it in context! No harm is done. I have done far far worse things when glutened, like telling my boss the truth! (anyone else done this?)

Lets step back an I'll tell you how I nearly killed myself ....

So I walk out and leave my keys and the door is an enormous secutiry door. So instead of the sensible thing (breaking a small window on my back entrance or asking my neighbours to climb off thier balcony onto mine) I can't cope with talking to people so I climb around the outside of the 5th floor building on a 2" ledge ...

Of course just at the point of no return I get scared and Im stuck there for 1 hour!

All of this to avoid having to talk to someone!

Now what was the problem again? It will look a lot smaller when you are feeling better, ask your DH for a cuddle!

Okay, I think you win gfp. But I do understand why you did that. That brain fog is really horrible and insidious. I'm coming off of a glutening myself. When glutened, I avoid people to the point that I don't even come here! And this is a safe zone!

Annette

Hi! My father has been going to doctors for years with "burning feet" and test after test found nothing. He was diagnosed with neuropathy in his feet. Do you think that it is possible that all of this could be from celiac disease? Three of my kids have celiac and I am going to be tested myself soon.

It is genetic so there would be pretty good odds that he may have at least a gluten sensitivity or intolerance. Or have him go gluten-free for 3 weeks and see if there's improvement. Or is he one of those that won't do it w/o a dr's say so?

Annette

My first night gluten free grocery shopping...what fun! I'll share my funny first and then the questions

I visited the Wal-mart bakery last night and just out of curiosity asked if they had anything that was Gluten free, to which the baker replied, "Sure we have lots of things without sugar." I said thanks and then continued my shopping experience...

I loved it. I'm still laughing after reading all of the rest of your post and responses. I never get over how uneducated people can be. But in the bakery? What do they think makes the bread rise the way it does? Bread fairies???? I was at a conference once and the meal served was chicken alfredo over penne. I said I can't have that, needed something different (before I got my triumph dining cards) and a server came up to me with a plate of the chicken stuff and said that there wasn't any gluten added to the dish. DUH!

If you have the money, you can do enterolab which is supposed to be more accurate than traditional testing. The blood work and endoscopy can have false negatives; way too often for me to consider them reliable. The best and most foolproof testing in my opinion is your own body. I was tested via diet challenge 9 years ago and that's been fine for me and my subsequent drs. (although I did have one internest say I could probably have gluten in small amounts. It was obvious she didn't know a thing about celiac). The diet challenge (which is what you are doing) is a valid diagnostic tool. And as far as other people thinking that you're overreacting - use the poison analogy. Ask them how much arsenic can they have without it being too much? Or just say "I know how I feel with gluten and without gluten." End of story.

But please feel free to come here and vent or ask questions or anything. We understand so very well how much fun it is coping with this disease.

Annette

Thanks for the feed back. Sometimes I am rather negative at times. Sunday I was just exhausted, had been on the road for 6+ hours to go to my step-grandma's funeral the day before and I just didn't take the cartoon right. I should remember that I wished celiac and gluten intolerance was more mainstream, and how much more mainstream can you get than to have a cartoon mention gi? And the week before Parade magazine had some really good paragraphs on celiac. Two weeks in a row the local paper had celiac and gluten intolerance mentioned!

Annette

In Sunday's StL Post Dispatch the comics section carries a comic strip titled "Rhymes with Orange" by Hilary B. Price. I've never found the comic very funny to begin with, but Sunday's 3/26/06 strip was offensive to me. (My DH found it funny) It was titled "Today's Barnyard Blues" and shows a cat stating "I'm lactose intolerant", a horse saying "I'm gluten intolerant" and a squirrel saying "I'm allergic to nuts". For me and others dealing with dietary issues 24/7 because we HAVE to, I don't see the humor. Or am I over sensitive?

Any feedback?

Annette

It sounds like he's mending already. Glad to hear that. I understand your concern though; I have to sit and list all of my symptoms to see if it's a cross contamination or maybe a bug at times.

I believe it is termed the medical arts or the healing arts for a reason - as good as the science is, MDs don't and can't know everything.

Please forgive those who are lobbing such hate bombs on this site. I understand that you are a victim too, but in a very unique position of being in the medical field. I look at your joining this forum as one more step in getting celiac mainstreamed like diabetes and other diseases. It's come a long way since my dx. At that time celiac was thought to affect maybe 1 in 500; the number is now 1 in 133. There are more articles on celiac, more books and in general more knowledge, which cannot hurt. I was concerned about you "testing" yourself though. Not all of the ramifications of gluten ingestion are known, it just doesn't make sense to us to keep putting something in your digestive system that makes your body turn on itself.

I agree with your idea of going completely gluten-free to see just what was being affected by the gluten. Be patient with your body, it can take up to three months, six or even longer before any damage done is healed. But i bet you will be pleasantly surprised with more energy, better mental acuity and a leveling of moods. But also be careful of hidden sources - shampoos, toiletries and meds - OTC and 'scrips.

Annette

Now, I'm gonna go try to make a pizza with a bag of Gluten Free Pantry's pizza crust mix. Sure hope it doesn't dissapoint, I really miss my pizza

It's okay, but no cigar. I love making my own crust with Bette Hagman's receipe. Fantastic!!!