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    Do you have questions about celiac disease or the gluten-free diet?

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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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Also was diagnosed with oral thrush once or twice. A doctor who never saw it said they were wrong and it was GERD....Can celics get oral thrush. Seems strange since I rarely get even flus, just sore throats that burn, tongue sometimes too.

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Are you in the U.S.? How can they deny you a test you request? It doesn't matter, I guess.... Nowadays, the tests are even better and more reliable. Get the blood test now. I recommend Prometheus Labs. They'll send you a kit, you bring it to your dr. Your dr draws blood and sends it off to Prometheus Labs. Your dr actually does very little. :) Leave it to the "professionals! :lol: You'll get your results in about 2 weeks. Request the whole work-up. It will look for gluten sensivities as well as celiac disease. Very good lab. Do not start the gluten free diet until your've had your blood drawn. While you wait on everything, you can familiarize yourself with the diet....which is not as big, bad, and scary as those not on it will tell you it is! It's actually very easy. Not deprivation-like, either.

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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

<{POST_SNAPBACK}>

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

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Yes, I agree that gluten intolerance/celiac disease could be a problem for you (those are two different things really).

Now, drawing from my own experience, it could also be a yeast problem, especially considering the thrush. Do a search here on the forum for "Caprylic Acid". You will find my posts on it. Then Google for that and something called "acidophilus". If you can relate what you learn to your own case, then I'd follow up on it. That's something which is as safe to try as going gluten-free. Might just be the ticket.

Hope you find the answers you need, and as stated, we do care, we've been there (many still are), and we want to help. No motives like money blinding our way either :)

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RIght now it's just treatment, Celebrex, skelaxin seems to help with the headaches, zantac was a chance discover that helps with both the stomach and head,, they have forced presciptions on me for years on every GErD medicine out there and it just gets worse, the zantac is the only thing that works but itis losing its effect.

I just dumped my old primary care, he never really listened to a word I said. I have a new one, I live in Los Angeles but I am taking time off in NH where I was raised, seeing a family doctor here now, he seems good so far.

I don't know why they denied the celiac disease test, seems like every time I asked for a test they would deny it only for me to jump doctors till I got it and I was right, They keep telling me the headaches were from the sinus, brow beat me into two sinus surgery that just made them worse. I finally got a head and neck MRI and there was a lot of joint inflammation. They don't know why but its there and when it's down the headaches do better. Why zantac would help with that is beyond me or the doctor's understanding.

I noticed alot of celiac people seem to have neuropathy issues with no real source until celiac has beed looked at. My father also had many simptions similar to mine when he was a kid and he was never tested, but celiac disease does run in the family. he now had neuropahy and doesn't know why. There is no family hisotry of that.

I don't know, hope this isn't too much information I'm just tired of my gut feeling crappy and this seems the only think I havnt' looked at.

can I just demand the test from teh doctor to either know or rule it ourt?

Thanks for you r quick response.

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What is the difference between celiac disease and an intolerance?

Is one just harsher than the other?

I've heard of the yeast thing and the acidipous (however its spelled) are they related.

I've tried the stuff, it helped only a little.

One doctor thought the thrush was misdagnosed so I 'm not really sure what it was or why. It doesn't happen often.

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Wait. celiac disease and gluten intolerance are the same thing. Right? Also, I'm confused.. did you say you have been tested and were positive for celiac disease?

I don't know why they denied the celiac disease test, seems like every time I asked for a test they would deny it only for me to jump doctors till I got it and I was right, They keep telling me the headaches were from the sinus, brow beat me into two sinus surgery that just made them worse. I finally got a head and neck MRI and there was a lot of joint inflammation. They don't know why but its there and when it's down the headaches do better. Why zantac would help with that is beyond me or the doctor's understanding

Are you eating gluten free now? Are you dxed with celiac disease? Brain fog is a definite component of celiac disease.

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Sorry about that,

I had headaches due to something in my neck that showed up in an MRI, The said no and pushed for sinus surgery. When it failed I got my own and it showed strange muscle spams in the head and neck that the doctors couldn't expain but are treating. I also have been wanting a celiac disease test and have been denied that, I'm pretty sure I am one and think the joint problem in my neck might in some weird way be related. as well as the burn in my throat.

To answer your question , no I havn't been tested. But I avoid pasta like foods and beer since I have trouble digesting it, didn't start till about five years ago. Certain breads seem ok. Could just be a coincidence,

witout 6-900mg of zantac a day I never really feel hungry just weak and that is how I know I should eat. with the zantac I'm not only hungry but lose weight without trying. Strange?

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OK, Here's what I think, and I feel very strongly about this opinion. Believe me, I know what it's like to have strange symptoms that doctors have no clue about, yet prescribe crap for anyway.

First, gluten intolerance is the cause of celiac disease, which is the damaged condition of the small intestine. The intolerance is the immune system response, which cause the damage. That's what I have gathered from the info I've read. If I'm wrong someone should jump in and say so.

Now for my take on your problems:

In a nutshell, your doctors are clueless. The drugs are just drugs, not cures and not addressing the actual problems. I think they are likely making the problems worse. If it were me (and I've been in that situation), I'd dump the docs and the drugs, go COMPLETELY gluten-free, sugar-free, yeast-free. Get the Caprylic Acid and maybe the Acidophilus too. DO NOT under ANY circumstances go off the diet even once. Not for a single bite.

Continue this for three or four weeks at least. Keep a diary and mark any and all changes, even subtle ones. Note your mood each day too. Look in the mirror at least twice daily - morning and eavening, but not just before you go to sleep because you will be more tired and might not be appearing as good as a few hours before. Watch for changes in the appearence of your eyes and eyelids, skin tone, tongue, and the color and temperature of your ears.

Only you can decide whether or not results are possitive, but remember that this is a long term solution, not a quick fix. Do not expect instant results by any means. If your body is loaded with toxins and yeast, it is going to take awhile to start clearing it out. Your gut cannot recover overnight. Like I said, it took months for me, though I did see noticable changes in as little as two weeks. However, I wasn't loaded down with prescription drugs. I was also very strictly adhearing to the diet, which is essential whether you are gluten intolerant or not.

I am familiar with headaches, sinus problems, neck pains, etc. It sure seems like what I was dealing with. Someplace in here I should probably make some kind of disclaimer, so consider this to be such a statement.

Now, if you decide to follow this advice, and it doesn't work after a reasonable period of time, then go to Google and search for "Threelac". It is expensive. I've never used it - only just heard about it, and I do not know how well it works compared to anything else. There is currently an ad on this forum for this site: http://www.candidafree.net/pages/1/index.htm They speak highly of that product, but again I don't know any more than what they claim - no personal experience with it.

I know many people have been trusting their doctors, and follow their advice because they are supposed to know what they are saying. After all, they are the experts, and have all the training and access to info, right? Think again my friend. They get most if not all their new information from journals, which are paid for by the drug companies. Doctors get biased and inaccurate information which leads them to prescribe drugs. That's all they know. They get little if any nutritional training, unless they specialize in it. Drug reps frequently visit and hand out free samples.

I was in real pain and had many health problems until I went to a local organic food store instead of a traditional doctor. I stumbled into things and eventually found what worked for me. I'm still working on it for sure, but I don't have nearly the issues I did.

That's what I think of your case. If you've been at it for a long time and the problems continue, it's time for a different approach. Serious commitment and effort is required on your part. Please do not rely on any pill, natural or not, to just "make it go away". It's something you have to take an active role in.

I really hope you find what you need. I'd be glad to read your progress reports too.

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