nettiebeads

I have been noticing mucos in my stool again  (I know, gross) ...... and I don't remember....... is this a sign of malnutrition or could this be nothing at all? 

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Are you gluten-free right now? Have you had gluten? How long have you had celiac disease? I think it's your body's way of protecting itself from what it considers harmful, rightly or wrongly. Mucus in stools is one of the symptoms of celiac disease.

I had a cast iron stomach throughout high school. No real problems until I was 35. First an ulcer caused by misuse of NSAIDS. Then the next year I had (all at the same time) a very severe sinus infection being treated with strong antibotics, worked full time, school in a different county at night two times a week, very very disfunctional home life. The D started while I was on the antibotic, thought it was related to that. So six weeks after I used up the meds, still had the D, only it was worse and really different from regular D. (those with celiac disease probably know what I mean) and went to the dr, got put on the gluten-free diet, and voila! celiac disease!!

Annette

I think I might have a problem with Gluten.I love bread but noticed about three years ago that I have major trouble digesting it-trouble that lasts for days.So I started staying away from American food favorites like pretzels,pasta,pizza,oatmeal,most breads,anything bready,grainy. My age is early 30's.I'm currently uninsured,but I've heard of people WITH insurance say most doctors don't help them with this or they're denied insurance,so maybe being insured wouldn't help much anyway.But I'd like to know if there is any financial assistance offered anywhere to help pay for an Enterolab test?I do come from  the regions where people tend to get this condition(i got dna tested  a few years ago,which also costs $350-I put it on a credit card and it was eventually paid off) and my family does carry  unknown intestinal troubles,but  til my bread problem I'd never suspected Celiac.It could be some other type of medical condition-the only way to know would be to test,but that has to be paid for out of hand just to even see if you have it.Maybe there is some sort of assistance for it-like welfare for celiacs or Needy? Gluten Intolerant? CALL#. If not maybe something'll come up in the future that'll allow me to  afford to get tested. The whole test is $350 and the gene test separetely is $150.It's not a lot of money,but I don't have it to spend either.I have enough necessities to pay for currently,with other needs waiting on the back burner-I didn't forsee having to get tested for Celiac, too.

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I never did have the "official" tests - bloodwork and the like. My dr put me on the gluten-free diet - no wheat, barley, rye or oats. Two weeks later no diarrhea, said it was celiac and stay on the diet. Of course, I'd have liked more information, but since coming to this forum I've learned so much more and have really improved health-wise.

Anyhow, why don't you just do the gluten-free diet w/o dr's? The only thing my current pcp does for me is monitor my bloodlevels, especially iron. Go completely gluten-free for three weeks, then introduce gluten one day and see what happens for the next several days while going back to gluten-free. That would be the diet challenge and is a valid diagnostic too. The only thing all of the tests could show you is if you had celiac disease or were just gluten intolerant. But the treatment is exactly the same. The only test I'm curious about getting for myself is the gene test. But it's not necessary and I'm living just fine without any of the tests.

Annette

I don't know why there is such resistance to its recognition here in the U.S. celiac disease generally seems "below the radar" of most of the medical community.

Probably because there isn't a prescription or regime other than diet to treat celiac disease. I have the impression that in other countries medicine isn't so isolated as it is here. More holistic; nutrition is recognized as an important factor in health.

Ultimately, the diet determines it, I'm beginning to think. If you do the gluten-free diet and you feel better or it all goes away, there's your answer The diet sounds pretty quick.

Exactly. That's how I was dx'd 9 years ago. Diet only. I have no desire to get any of the "official" tests done, other than genetic, just to satisfy my curiosity and plus I don't have to go on gluten for that. W/i two weeks of starting the gluten-free diet I felt so much better. I don't have any desire for wheat based products because to me they just mean pain, D to the max, overwhelming fatigue and fuzzy fuzzy brain.

I'm doing the total gluten-free diet beginning today and I'll see what happens.

Keep us posted!!

Here's to health!!

Annette

Have you mentioned it to your dr? How long have you had celiac disease and how long have you been gluten-free? The fact that it happens only when you drink, maybe it's the very first stages of Lupus? Definitely talk to someone about it though.

Along with the other symptoms of gas, bloating, sometimes nausea, sometimes dizziness, all of which can occur from within an hour or two of eating and then last several days, I've also noticed lately weird feeling in my feet and hands....almost a bit numb, definitely tingling, weird feeling overall.  This is new....have any of you observed this with a reaction?

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Yep. I was dx'd 9 years ago with celiac, but continued to eat cold cereal with malt, malt flavorings. And I so loved the malt drinks from Bicardi and Smirnoff's. I gave those up a little over a month ago, thanks to this forum. My energy level increased dramatically and the numbness in my legs and face, which I had associated with just plain getting older, has reversed some. Some mornings I would get out of bed and it would feel like I was walking on stumps. And the dizzyness I thought was just congestion from allergies. That's mostly disappeared. It may have been a combination of allergies and a low-level glutening for many years. Dunno. I'll mention it to my current gp and see what he thinks. He told me that he dx'd a patient of his with celiac disease and her only complaint was neurapathy with no known cause. celiac disease is a funny disease that way - it manifests itself in so very many ways (200 symptoms that can come and go and have different levels of severity with each person). Hope you find your answers soon and start getting better.

I'm finding a lot of useful info here, but I'm still left unsure of how to proceed.  I'm highly suspicious that I could have celiac disease or at least the gluten sensitivity and things do seem to be getting somewhat worse than what I've put up with my whole life until now. 

Tell me if I'm wrong, but it seems from what I've read that 1)  blood tests aren't necessarily the best diagnostic tool  2)  The enterolab stool test is more accurate 

I guess I'm wondering if I need to go thru all the expense of testing when the "cure" is going to be dietary anyway.  That is, would everyone recommend just following the diet for a period of time just to see what happens?  I guess recovery from symptoms would tell me everything I need to know, right?  Or is there something beneficial to actually having bonafide positive test results in hand?  Is having the test resuts helpful to give you the drive necessary to do the diet properly and completely?

ALSO....if you believe there IS value in the blood tests, could you tell me exactly what group of tests would be needed?  I thought I saw this somewhere, but couldn't find the info again.

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Go to search up at top and type in tests, or go to members and enter KatieUSA and then search her posts. I've never had the tests done, well, not the blood or stool or anything. I was dx'd by the diet challenge by my dr. 9 yrs ago. But I don't think that the tests, if any, at that time were very sophisticated anyhow. I believe the bloodwork would tell you just how bad off you are and if it's celiac or gluten intolerance. Enterolab can let you know if you have specific genetic markers for celiac, gluten intolerance, or both or none. Biopsy, if done correctly, can show how much damage, if any, has happened to your villi. That's it in a nutshell. It depends on how much you HAVE to know. Me, I'm kinda curious about my genetic markers and may pursue that. There is absolutely no way I'm going back on gluten to find out if maybe I have gluten intolerance or celiac. Either way, the treatment is the same - gluten-free. Remember though, if you try the gluten-free diet and have the tests w/o going back on gluten for a good length of time, the tests will be skewed.

I've been thinking about my answer since I first read your post. I don't think positive or negative. It just is. Period. Maybe you would consider me a fatalist, but I don't waste emotionally engergy deciding if something is "good" or "bad". If I can't control it, then I just control my reaction to it and go with it. Which is for the most part what I've done since day one. What I don't like is dr's who won't treat, understand or give bad info. People who are intolerant of someone who is different. (We're all different in some way, just like everybody else). And those who think that I could be "cured" if I just take a certain product (my brother and his wife with their Reliv. I set them straight on that matter) I surround and focus on people who add to my life (dh,dd, true friends). Life is too short to let those who affect you negativly to have a place in your life.

Or how about a cold cereal? My dogs will chow on anything that's human and I accidentally spilled some chocobursts (gluten-free) I know that dogs aren't supposed to get chocolat, but after all of the processing, I doubt that there's enough in one little piece to hurt them. Mine like carrots, cheese, and of course, deli meats. Just a little bit will do. Oh, and fruits. I had opened a can of fruit cocktail and the dogs loved the peaches.

Does anyone have a good suggestion for a cereal?? I love cold cereal, but would like alernate cold cereals.

Also, what about oats, is this a no no?

Sincerely,

Ellyn

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Oats is still an unknown quantity. I think the current official verdict is that those with celiac disease who are super super sensitive cannot tolerate oats, because the protein found in them is so very nearly identical to the gladian protein that sets off the reactions in those who do have celiac disease. But the other problem is that oats in the US are highly contaminated by wheat, that all US based oat products have to be avoided. Better safe than sorry.

Coco Pebbles and Fruity Pebbles are gluten-free. I found locally (mid-Missouri) fruity Dyno-bytes by Malt-o-Meal and Coca Crunchies by Always Save.

For years I have had health problems and doctors seemed stumped.

I asked for a celiac test once and was denied.  Here are the symptoms

Gerd Medication does not work.

Lots of zantac works.

low bone density.

buring in throat, gaging

headaches and muscle tension

large amounts of vitman c ang magnesioum help

massive bloating

light diet helps

cannot stomach beer anymore

bone spur in my foot

zytec helps stomach cannot explain

sinus infections, uet sinus look fine

cannot stomach motrin any longer

alka selzer seems to help alittle

mild anxiety

left side abdominal aches

ct scan showed nothing in abdomon

stomach scope showed mild bloating and some scarring, nothing serious

they keep thinking I have an ulcer but nothing shows up.

melthyprednisone helps

celebrex helps.

irregular stool, need alot alot of fiber to normal ize,

any thoughs....could I be off or is a celiac test worth it at this pain...tired of tummy pain and fatigue.

thanks in advanncde

jdog

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K, here's what I think -celiac disease is a possibility, or at least gluten intolerance or wheat allergy. Why was the celiac test denied? What test - blood work, gene, or biopsy?

Where are you? do you have health insurance? It's not like the Dr. pays for the test. That part always ticks me off. If you ask for something, drs act like you may know more than them. For some drs, anytime they may have to step outside of their comfort zone, they get real defensive.

Okay, here's what I can think about some of your symptoms -

Low bone density - malabsorption that could be caused by celiac disease.

burning in throat - acid reflux caused by malaborpsion. (I still get a little acid reflux every now and then)

light diet helps because your intestines are damaged, possibly from celiac disease.

beer problems - it's from wheat, can't have it if you do indeed have celiac disease.

Some other posters have had congestion and sinus problems that cleared up after going gluten-free.

anxiety and fatigue are symptoms of celiac disease

It looks like some of the stuff you take will help alleviate the symptoms short term but lose their effectiveness long term. And repeated doses of NSAIDS long term will cause ulcers (I know first hand - different story not related to celiac disease) or at least gastrointestinal distress. And of course steroids will reduce any inflammation, no matter what the cause.

Which begs the question - do dr(s) want to know the cause or are just the symptoms been addressed? How long have you had these symptoms? your age? ethnic background (northern europeans seem to have more problems w/wheat. Me -1/2 swede) Have you had a major stressor (college, divorce?) recently?

Have you tried the gluten-free diet? Can you change dr's? can you get a referral to a gi?

Where do you live? Near a major health center? Let me/us know so we can get you on the right track. We care, we've all been there and know that celiac disease is a frustrating, but easily treatable disease. Which is another gripe of mine - dr's are comfortable with anything they can prescribe for, but if it involves nutrition, then they are at a loss, so obviously it's all in your head. Makes sense right? Sorry to get on my soap box with your problems, I'll get off now so we can focus on getting you better.

Annette

Me- I'm a Well's Blue Bunny fan. And not because my cousin works at the plant in Le Mars, IA. Whatever happened to their exquisint Mint????

Does anyone know of any gluten-free rice cakes?  I was eating the Quaker ones everyday because I thought they guaranteed their rice cakes.  Oops.

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I got some at my local health food store. I can't remember the name, but they were also 100% organic from California and bland and pricey.

For those of you that enjoyed the Kroger brand of corn pops, your enjoyment is over!  It was a sad morning when I reached for the new box and just by chance read the label.  They have started adding wheat starch.  This is new, it used to be safe.

Hez

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I hate it when formulas are changed. Malt-o-Meal started using malt in more of their formerly gluten-free cereals But I did find some chocoBalls (think coco krisp) by Always Brand (Big Yellow bag) that are gluten-free!!! and crunched up should make an acceptable chocolate graham cracker crust - just a little more coco powder and potato starch. I better write the company and ask them to please, please not change their formula!!!

Okay, here is part of the answer from Quaker concerning gluten free

"...Grains are handled and transported in bulk by our suppliers...It is important we let you know the this product may contain trace amounts of grains that may be grown, harvested or stored with other grains and we cannot guarantee that this product is gluten free...."

I quit them, better safe (and healthy) than sorry.

I have eaten Quaker Rice Cakes for over 4 years now and I know I have never had a reaction to them.  I used to eat their caramel corn cakes and then they changed them to caramel corn rice cakes--I couldnt eat the corn cakes anymore anyways.  I did react to their Choc Chip Snack Cakes a few months ago--I thought I reacted to the soy/corn combination, but I could have been glutened by them.  My reaction began almost 20 mins after eating 3 little rice snacks and I was sick for over 2 weeks--took another couple of weeks to get back to normal.  I would really like to know how many of you have reacted to them--maybe I should stop eating them altogether.  Thanks, Deb

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I actually email them concerning their products - they don't guarantee their products to be glutent free. So I quit them. I miss them, but I like my health much more than a product.

I read the ingredients for the Turkey Hill Philadelphia Style Vanilla Bean Ice Cream. They SEEM to be gluten-free but until I can contact them, does anyone know if it is gluten-free?

Also, Edy's Grand Vanilla SEEMS gluten-free but it is loaded with corn syrup, I rather stick with something easier on the body.

Finally, what is the hype about Splenda?

THANKS FOR YOUR INPUT, I REALLY APPRECIATE IT !!!!!!!!!!!!

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I've found most ice creams safe - just read labels, but of course if it's cookie dough, or brownie or something like that in the flavor, then it's out. Splenda is supposedly the closest thing to real sugar w/o the calories because it is made from sugar. But I did some internet reading on it, and it's made from alcohol, but not grain alcohol - it's derived from wood alcohol which is poison to your liver. So I dunno.

Thanks from me, too! I was thinking about this board and how much healthier I've been from all of the things I've learned Definitely strength and wisdom in numbers!!!!!

When did you get the b/w done in relation to your carb-free timewise? That may have skewed the results. It seems to me that gluten is definitely the enemy. But just what you have is what needs to be defined.

I'm happy for you. It's the little things that really do count, and when people show just that extra consideration you just melt. Have a really great time!!!

So if anyone has been following the gluten free gravy thread, I bought two packets of Pacific Natural Foods mushroom gravy which is listed on thier web site as gluten free, though not on the package, only to find that the second or third ingredient is wheat fibre.

Naturally I flipped out, and both broncobux and I emailed them. This is the response:

The Mushroom Gravy is gluten free because the wheat fiber is minus the

protein.

Regards,

Peggy Carpenter

Sr.Customer Service Representative

Is this possible? I'm not sure that I could bring myself to eat it even if it is, just because it has the word wheat in it, I'd probably get sick just from being worried about it, I've built up a heavy pychological anti-gluten barrier in my little brain, but I am totally fascinated by this statement.

And if it is gluten free - why doesn't it say so on the package like all thier other gluten free stuff?

Elonwy

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Hmm.... That's a good one. I'm stumped. I mean, can they 100% guarantee that it won't gluten you? I'm with you - I'd be so very leery of anything with the "W" word in it....But when they process it, how is it done? Do they take every little bitty grain and separate it with tweezers to make sure the bad stuff doesn't cross-contaminate the rest of the grain? I don't get it.

There is a theory as to why oriental women do not have the problems Western women do - the theory is that their diet is based more on soy than wheat, like ours. I just remember that when I was having "female problems" that a nice bowl of miso soup would help a lot. But things got too bad for me and I had to have a complete hysterectomy four years ago.

Tiffany - what kind of ornaments do you make? I'm going to try beading one for the Christmas exchange at work.

I agree that the biopsy would probably be a waste of time and money. It can rule in celiac disease, but not rule it out - false negatives can happen. At one time biopsy was the golden rule, but not so much any more. But of course, if your curious as to if damage has been done and if so, how much, go for it. But the biopsies can miss the damaged area or be so slight that only a highly trained experience tech could accurately read the results. Your choice.

Hi squared!! I haven't ever had my genes done, but I'm curious about them too. You symptoms read very much like some of the others in this forum, and I believe they are definitely gluten related. I don't think that there are ANY absolutes when it comes to celiac disease, gluten-intolerent, genes, gluten sensitivity, whatever.... It does sound like the gluten-free diet would be your best bet, and I'm sure that your symptoms will start to clear up, but it'll take time. I finally figured out after years of eating cereal with malt in it that I SHOULDN'T be. I really did know better, but it wasn't making me real sick so I thought it was okay. But what it was doing was still causing problems, but they were the slow kind - fatigue, headaches that were becoming more frequent, and numbness in legs and face. And dizzyness. Since I've been REAL REAL good for the past 6 or 8 weeks they symptoms have subsided quite a bit, but still some residual numbness in my legs in the mornings. Sometimes I feel like I'm walking on stumps.

Are you completely gluten-free? I mean besides food, there's meds, cosmetics, cross-contamination... Let me know if you're getting any better.

Annette

About 2 years ago, a Dr. told me I had an intolerance to wheat. Right after that, I got a Celiac test and it was negative. I've been on and off gluten-free diet (Doc said it wasn't a big deal) until this year (around June, but still make occaisional mistakes). Since gluten-free, I notice the stomach pains gone and I am more, er, um, regular, you could say. I always had bad heartburn, which didn't stop with gluten-free (I'm on Nexium). Now I have really bad gas, mostly belching, pain in my chest/upper abdomin and I think I am bloated (pretty skinny, but can't button pants). The most recent thing I notice is that the other night, I was driving and my boyfriend was eating a sub sandwich... I got all itchy and hot and sneezy (my usual allergic reaction) but just chalked it up to I might have been gluttoned that day. Then today, I go into a sub shop to get a salad, and while standing in line, the same thing happens. What the? Is that possible that I developed that strong a reaction? Should I check for Celiac again? See a Dr.? I'm confused.

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I'd definitely see the dr. or an allergist. Allergies are not completely understood even in this day and age. The medical field doesn't understand why they happen, but do understand the how and can treat that. They haven't figured out why some allergies are outgrown, others worsen and why if some are outgrown, others can take their place. My allergies to red wine has gotten very severe and then three years ago I developed an allergy to champagne. Go figure. Anyhow, you may be heading towards anaphalactic shock sometime in the future, so I would see someone about it very soon.