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I Don't Suppose I Shall Ever Get Diagnosed, Shall I?
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20 posts in this topic

Excuse the long rant, people. I rather hoped that my first post here would be a cheery intoduction. But, heck, well i hope you guys can appreciate my feelings at this juncture (saw my Doc today). I'm English, by the way. And the NHS sucks, but you other Brits know that,already, don't you?

I started the gluten free diet about 4 years ago, when I started doing agency work. This was necessary because the effects of gluten exposures were so debilitating, by that time, that I would not have been able to work otherwise. I had previously tried to just ignore the symptoms, because I knew the gluten-free diet is expensive (Some of my online friends are on it, and were urging me to go on it too, because they said i had all the same symptoms they had)) and felt that I really could not afford to have that particular problem, and was much more concerned about my financial situation than my health. I thought maybe the symptoms would just go away, if i ignored them, but they just kept getting worse instead , and the connection with my duet became increasingly clear (though not half so clear as it became when i tried to cut out gluten, and suffered for all my naive mistakes)

I also approached my Doctor around this time and was given a blood test for antibodies. This was negative, probably because I had already started a gluten-free diet. You are supposed to be on a normal diet continuously for several months before the test, But my gluten reactions were too extreme by this time. A few hours after eating food containing gluten , aside from diahorrhea, my stomach would fill with gas so fast that I could barely expel it fast enough and feared it would rupture. I would be in agony for a time, feel extremely drowsy, mentally confused and nauseous, then fall asleep for the best part of the next 24 hours. I was also getting severe joint pain and stiffness, and was not remotely up to holding down a job. But I had no medical excuse for not working, and was being pressured by the benefits agency. So I really had to do something.

I also passed black blood from my anus during this period and was referrered to a Bowel Cancer specialist,as my Doctorfelt this was more urgent than diagnosing gluten problem. However , after some weeks on the gluten-free diet, my stools returned to normal and the specialist agreed with me that there no reason to suspect cancer, in the light of this, and that my self-diagnosis was problably correct. Unfortunately he said that his own diagnostic tests were specific to cancer and would not reveal Coeliac Disease. I know that passing blood is not a normal symptom of Coeliac disease, but it does damage the gut, and I think thar few people would have let it get quite so advanced as I had, before seeking help, so would likely not experience this extreme. The fact that I had been unemployed had made it possible to live with the symptoms, and not realise quite how debilitating they were.

As I said to my doctorI really badly needed help with cost of gluten-free diet, which would apparently be forthcoming with a suitable diagnosis. I was next referered to another Specialist for diagnosis of Celiac disease. She was sceptical for 2 reasons:

1) the fiece pain in the small of my back was atypical. However, I have since found that this could be referred bowel pain

2) I had found that a dose of Piriton would ease the cognitive symptoms, and told her so. She asserted that antihistamines would not be effective against Coeliac Disease, as it is a gastointestinal condition, not involving histamine responses. However , I found that some diagnosed Coeliacs have posted similar findings on the web. Also, gluten is know to trigger neurological symptoms in people with Asperger's Syndrome (wjich I have), MS and other conditons. The mechanism is not well understood and it is altogether plausible that Piriton would help, in such cases. These cases are usually described as Gluten Intolerance, not Coeliac Disease, as they can occur without the gastrointestinal symptoms. It seems that I have both sets of symptoms, hence the confusion

(and why the heck did I have to research all this for myself? Shouldn;t a gasroinestinal specialist, respomsible for diagnosing Coeliac Disease be aware of all this?)

I am absolutely certain that all those symptoms (both intestinal and neurological) are triggered by gluten exposures. I made many mistakes when I first went on the diet, as I did not guess that certain foods would contain gluten, and I am sensitive to very small traces. Therefore it was my recurring symptoms that alerted me to presence of gluten in certain foods (eg caramel, malt vinegar and whiskey, some brands of potato crisp) even though I had not initially read the labels, nor looked those foods up on the web . This is beyond coincidence.

I cannot get gluten -free food on account of my Asperger's Syndrome (though I know some people who do; the reason beong that this was misdiagnosed as NVLD by an idiot Neuropsychologis who decided I was bad at maths , just because I couldn't do an aural maths test (this despite me having Maths A-levels). She said this was the decisive factor. As these are conditions are hard to diagmose in adults, in any case, there sems precious little point in pursuing a 2nd opinion.

I find it really hard to manage a gluten-free diet on a tight budget, partly because I am sensitive to the slighrest trace of wheat. I recently bought cheap rice noodles (only 80p per pack, as opposed to about

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Hello, and welcome to the forum. I can really understand your frustration at trying to navigate through the medical maze with its many dead-ends and circuitous passages. Somebody should put out maps of how to do it :blink: I am wondering if you have something like a medical ombudsman, who can help you deal with the medical aspect, the benefits aspect, the diagnoses problems? You really need an advocate to go to bat for you. It is really hard when we have inaccurate labels stuck on us which prevent us from doing anything else which might help us. I am sorry to not have much to suggest for you at the moment except to see if there is such a person in your medical system who will help you.

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we've got the same ridiculous problems over here with our health care system and our "in the box" doctors. we all understand your frustrations.

the gluten-free diet can be expensive of course- i know. what about sometimes just simply making a pot of basmati rice instead of gluten-free rice pasta.. its really yummy. sometimes i even love it with my bolognese sauce instead of pasta. i lived with 2 hawaiian girls once- and they ate rice with everything, even scrambled eggs :P if it doesnt pack the weight on u (as it sometimes does for me)- rice can be a good gluten-free way to make your dollar (or pound) stretch.

you've been thru hell- i dont know if i was in your position if i would go back on a "normal diet"/gluten challenge- i dont know if it's worth it. ???

and all your symptoms and stories sound like textbook celiac OR NonCeliac Gluten Intolerance- and frankly they're both just as serious and require the same adherance- you already know how much gluten affects your body- in my opinion (like many of us)- you could probably teach your doctors a seminar on this crap.

and the blood symptom could also be from an ulcer- it doesnt have to be cancer-

ok, now im rambling, good luck to u!!

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Thank you both for the sympathetic responses.

nushroom- i actually found myself a mental health advocate, at the back end of last year, but, after a bit of to-ing-and-froing he said there was only so much he could do without a referral to an appropriate body from my doctor (one thing he wanted to do was to get me some direct help with opening my mail- which by then afflicted with extreme anxiety, due to debts etc. and i was too depressed disorganised to deal with things perroperly, even when I did open it) when I asked her for one, she said that one had been sent to me, sometime before, and i must look for it in my mail, I had loads of unopened mail by then and could not find it, and it will be past it's sell-by-date now, even if i do. It was this (non) development that made me so totally depressed that i stopped caring what happened next. i don't know what other kind of advocate i could get other than Mental Health one, as I lack any other serious Dx.

Cassp. *wince* i have been going for rice noodles rather than rice because my teeth have now rotted away (this happened quite suddenly, and i'm sure it is indicative of something, but i really don't know what)so i can't chew rice properly.i do eat rice but i suspect that i'm not getting the goodness i should from it. I suppose, perhaps, i could overcook the rice til it turns to mush?

I don't know about worth it, going back on a normal diet. I just know i simply couldn't do it, not without nursing care, strong painkillers, etc, because if i have just a few gluten reactions in the same week, then my symptoms rapidly start getting really bad again. The only pain I ever had that was as bad as that bowel pain finally got is neuralgia, which is sheer nerve pain, so presumably as bad as it gets. I don't want that again, and not only because I don't like pain, but because it convinced me there was something seriously- and probably dangerously- wrong. I shall hardly be given all that support when there's nothing wrong with me, shall I? *sigh* I am happy to eat gluten under observation, once or twice, and let the resulting symptoms speak for themselves. That ought to be enough, oughtn't it? But that isn't an option , of course.

If I tried that, i think the inevitable result would be that I'd poison myself for nothing, because I wouldn't be able to keep it up for long enough. I've thought and thought about it, but i just keep coming back to thought that a bullet through the brain is much faster and cleaner *laughs*

No, you didn't ramble too much. I'm still beating you by miles! *smiles*

jay

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Oh, if that were not too sad it would be funny :( You ask for help in handling your mail, and he said he had sent you some help --- By Mail!!! So of course you missed it because opening mail is your problem. It's like, Doctor, I have a problem with gluten. Doctor says, Okay, take this pill. Oh, by the way it contains gluten :blink:

Can you go back to this person and ask him to redo it and hand it to you, because you can't handle your mail, you need it in your hand?

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Oh, if that were not too sad it would be funny :( You ask for help in handling your mail, and he said he had sent you some help --- By Mail!!! So of course you missed it because opening mail is your problem. It's like, Doctor, I have a problem with gluten. Doctor says, Okay, take this pill. Oh, by the way it contains gluten :blink:

Can you go back to this person and ask him to redo it and hand it to you, because you can't handle your mail, you need it in your hand?

It was my doctor who sent the referral by mail *sigh*. Well, at least i've got a referral to see a neurologist on its way (and a kind friend to hold my hand while i open my mail) which turns out to syurprisingly good news!

STOP PRESS

One of you wonderful forum members , just sent me this link:

http://www.livingwithout.com/issues/4_12/ataxia-2366-1.html

It's all about Gluten Ataxia, and it just about tells the story of my life. I didn't say in my OP, but I was beginning to be sure I had MS, but Gluten Ataxia would explain all the new symptoms I've been getting , and much more besides.

Right now, i don't give a damn if it means that i have permanent brain damage, I'm just weeping for joy to find that there's something that explains the damned lot.

Thank you so much!

jay :)

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Thank you both for the sympathetic responses.

because my teeth have now rotted away (this happened quite suddenly, and i'm sure it is indicative of something, but i really don't know what)so i can't chew rice properly.

jay

so have u been 100% gluten free for a long time?? were u sick for many years before finding gluten free???

im asking because-> teeth problems can totally be because of Celiac. ive got some dents & holes in mine. that actress Jennifer Esposito (who has Celiac)- she said that by the time she was diagnosed- parts of her teeth would chip off when she ate.

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so have u been 100% gluten free for a long time?? were u sick for many years before finding gluten free???

im asking because-> teeth problems can totally be because of Celiac. ive got some dents & holes in mine. that actress Jennifer Esposito (who has Celiac)- she said that by the time she was diagnosed- parts of her teeth would chip off when she ate.

Yes , I was sick for a good few years. And it was during those years when i was getting sicker and sicker, but not connecting it with gluten, that my teeth started falling to bits.

I've been wondering if there;s a connection, but there doesn't seem like anything bar a sprinking of anecdotal evidence to suggest there is. That's not to say that I'm knocking the theory, just it's far from being proven or explained.

Here's a bit more grist to the mill, though:

I also suffer Trigeminal Neuralgia and, like many sufferers I used to assume it was "toothache" and repeatedly went to my dentist with it. It was usually associated with one tooth or another. Now, I can say that i experienced nerve pain in each dead tooth before it ever started to decay, and in that order. Months or years of neuralgia, then, finally, tooth decay, at last. It got so I could predict which tooth would go next, even though quite a number were previously X-rayed and declared "perfectly healthy".So I think the nerve died first, and then the tooth followed after.

I also wound up with Bell's Palsy (a symptom of nerve damage) after getting neuralgia in my face.

So what i'm thinking is this : gluten reactions can sometimes damage nerves (this also ties in with Gluten Ataxia and the theory that gluten can trigger MS) and damaged nerves can lead to tooth decay. but heck, i'm no expert and this is very hypothetical. Interested in hearing other opinions.

What do you think?

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Yes , I was sick for a good few years. And it was during those years when i was getting sicker and sicker, but not connecting it with gluten, that my teeth started falling to bits.

I've been wondering if there;s a connection, but there doesn't seem like anything bar a sprinking of anecdotal evidence to suggest there is. That's not to say that I'm knocking the theory, just it's far from being proven or explained.

Here's a bit more grist to the mill, though:

I also suffer Trigeminal Neuralgia and, like many sufferers I used to assume it was "toothache" and repeatedly went to my dentist with it. It was usually associated with one tooth or another. Now, I can say that i experienced nerve pain in each dead tooth before it ever started to decay, and in that order. Months or years of neuralgia, then, finally, tooth decay, at last. It got so I could predict which tooth would go next, even though quite a number were previously X-rayed and declared "perfectly healthy".So I think the nerve died first, and then the tooth followed after.

I also wound up with Bell's Palsy (a symptom of nerve damage) after getting neuralgia in my face.

So what i'm thinking is this : gluten reactions can sometimes damage nerves (this also ties in with Gluten Ataxia and the theory that gluten can trigger MS) and damaged nerves can lead to tooth decay. but heck, i'm no expert and this is very hypothetical. Interested in hearing other opinions.

What do you think?

could be ... from what i understand-> gluten intolerance can lead to severe B12 deficiency which leads to nerve damage. a lot of people on here have had nerve damage & ataxia.

and gluten intolerance leads to D deficiency- and u need D for your bones and teeth, ya?

i didnt know the teeth link was a theory- everytime i read it- it just seemed like it was "matter of fact".. (teeth and nail deformities). i also had Beau's lines on my thumbnails- since i was 8 years old. i assumed they would disappear or improve when i went gluten free. they didnt. then i got diagnosed with thyroid disease- after 1 month on meds, the lines disappeared.

ya- i dont doubt for a sec- that gluten can be the cause of all your nerve & teeth issues.

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I had no idea about the nerve tooth thing and your information is very interesting to me. I have always had good teeth but started to have pain inside my teeth. Then gum swelling and pain but no signs of periodontal disease or cavity. Dentist didn't do anything...said there was nothing to treat. After a year of this nagging nerve pain, my teeth started to decay very rapidly. I got a root canal...the pain stayed. The exact same pain in the next tooth over. The next few months that tooth went. I think it is Celiac related because all my other symptoms were happening at the same time.

All tooth pain is gone now that I am gluten free.

I have had two huge episodes of rapid tooth decay, both happened during pregnancy. I think my body was fighting to give the baby the nutrients and my teeth suffered the vitamin deficiencies C and D and Calcium? These are the things you made me recall with your post. Celiac effects everything.

I so hope you get better fast and that it really is all gluten related and not MS.

I'm glad someone gave you the gluten ataxia article. We always thought clumsiness just ran in our family! Well that's kinda true but it isn't just clumsiness...it's Celiac gluten ataxia.

No end to the evils of wheat.

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No end to the evils of wheat.

tru dat <_<

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sorry for raising this long dead thread, but i just spotted a mistake in my original post

 

It's Loratadine, not Piriton that eases my symptoms (i used to frequently get the two mixed up. to my cost! :lol:  ) Probably worth it's own thread , but I thought I better correct it here,

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Well...now that you have raised the thread...are you feeling any better? Has there been any progress with your doctors and a diagnosis? I truly hope you are feeling better and some of your symptoms have eased at least!!

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Well...now that you have raised the thread...are you feeling any better? Has there been any progress with your doctors and a diagnosis? I truly hope you are feeling better and some of your symptoms have eased at least!!

ummmmm.....

 

in a nutshell, things have gotten worse!

think i've only survived this long without topping myself, because i finally was forced to confide in my family, who've been incredibly supportive.

 

I put the Gluten Ataxia  idea to my GP, who aid it was for a neurologist to assess that. However, the neurologist whom I subsequently saw (about 20 months ago) decided that all my symptoms were in my mind and due to "mental health problems". This opinion led to me being assessed as "fit for work" and Iwas disqualified from ESA (sickness benefit) accordingly.  We (my sister and I) are still fighting that decision., and mmy family (who really can't afford to) are having to support me financially to  some large extent.  My doctor was , by that time stumped, because - whilst she does take my symptoms seriously- she'd run all the tests that she, as a humble GP, could authorise.

 

I've developed more and more food intolerences, all of which clearly affect both gut and brain , much like the gluten (though asociated pain is at the front of my body, aroiud the bottom of my ribcage, unless it's actually gluten).  An Allergist (whilst impressed with my detailed food diary and other notes) found I had no food allergies, and wished me the best of luck (saying "intolerances are not well understood"  and also not considerered serious by the NHS, since they can't leadto anaphylaxis). Next, he gastoenterologist found nothing excpt gallstones(which he sais would not account for my symptoms) and was clearly suspicious of my entire account . He told me  never had a patient who complsined of associated neurological symptoms. The nutritionist he referrered me to had no better advice than "You  must eat grain" even though I was, by now,  reacting to every kind of grain, including rice.

 

Some things (especially peanuts) also trigger pseudo-allergic symptoms: eg asthma, sneezing, watering eyes, breathlessness, palpitations. in addition to the the "normal "symptoms! The allergist disdn't find that at all surprising, since that's not uncommon, according to him(and might possibly be due to histamine reactions in the gut, if i recall correctly) but it looks like other specialists just see that as further evidence that it's all in my mind

 

I really wish that I did have allergies, as the Allergist is only Consultant who's ever really paid attention and taken my symptoms seriously. In the absence of that, i can't trust any of these other opinions.

 

I've found thar my sensitivity diminishes inthe abscence of exposure.  so I now re-introduce rice at intervals. then drop it again once i start getting severe reactions. Hoping for better ideas via this forum, so have started a thread about it! After hearing the neurologist's opinion, I actually did the gluten challenge, in a deperate bid to prove that some of my symptoms are real. I was surprised to find I could tolerate gluten again, and ate it semi-regularly for 7-8 months. After six monthas I took the blood test, which was negative again. a month or two later, my reactions suddenly started again and with such severity, I quit gluten for good.

 

The fatigue and chonic neurological symptoms continue to worsen. I appear to getting seizures (my GP's opinion, as well as just about all non-ptrofessionals who've witnessed these attacks) but I've gone down in medical notes as having tested negative for epilepsy (a single hour of EEG, during which  time, none of the really worrying symptoms occured) , and it;s somewhere between diffult and impossible to re-open that issue with the latest neurologist.

 

I got that second referral eventually because my sister managed to get a vid demonstratiing the episodes of  muscle spasms that I get when walking. But it only tells a small part of the story of course.

 

There was far too much to say of course, and i'm useless verbally, I wrote it all down. But he didn't have time to read it.

 

I just had an MRI scan, but I had one two years ago, which never showed anything, so that offers little hope. My follow-up appointment is in December.

 

I think i'm just about ready to give up on that stupid charade. If I can't even communicate my symptoms, or ask for second opinions, it's useless, isn't it?

 

 

Thanks for listening!

 

PS I've since  had all my remaining teeth removed, thank God. But...I've since been getting a lot of faceache, all over the place (including my ears! )which my Doctor says in Trigeminal Neuralgia, again (even though TG was also dismissed as "all in my mind" by that first neurologist, because it's atyipcal, or because she didn't like me, or whatever :lol: ) it looks like this was triggerered by the trauma of the surgery, and also looks like it's never gonna go  away. On a positive note, though, it's not normally near so intense as previous bouts of TG. Thus the diagnosis surprised me, and led to a pretty thorough intenet search before i felt anywhere near convinced.

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Why don't you focus on getting better by strictly staying gluten free? Clearly that is one thing you need to do, then take everything you can that agree with your body, food,enzymes,probiotics,vitamins, while having your familiarly support you. Then once you are back on your feet you can go back to work and clear those debts.

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Oh my goodness! That is a lot to take in!!!

 

Do you have homeopathic doctors in England? (That is where you are, right?) If you do...I would think about seeing one of them instead of a regular mainstream doctor. I've lost patience and faith in regular doctors and simply use them as a tool to help me with some of the harder things I need diagnosed or for those times that we actually need medication. You simply do not brush me and my concerns off as heartburn or constipation....especially after I've told you that never once was there a single instance that made me think heartburn and the medication that was given last time did absolutely nothing....and NO that doesn't mean give me a higher than normal dose! Now...if they hadn't been GUESSING and had run actual tests and spent more than 5 minutes with us then maybe I might be willing to listen to that.

But anyway....at this point I would be doing a major elimination diet to see if that helps and to get a good grasp on what you can eat. Once I got that under control (hopefully with the help of a good naturopath or something) I would work on figuring out what vitamins and minerals I was deficient in and start working on getting those into my system. Maybe add a good probiotic once you have that all under control.

Either way....huge, HUGE hugs to you! Wish I could be of more help. Maybe look into the Paleo way of eating. It avoids all grains and it sounds like it would be a good idea for you.

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hey Mommy :)

 

Many thanks for all the feedback

I think i answered most of your points in the other thread.

 

Yep, I'm in England, As regards Private Medicine:

 

Well, if i ever have any money to spare (and that's a very big "if") i do intend to blow it on private medicine. And whilst I'd very much like to go outside the mainstream, my priorities would be as follows:

 

1)  A private neurologist, to get the possibility of congenital Mitochrondrial Disease investigated. My research on the internet (prompted by autism newgroups , who sent me articles about the recently discoverered links between ASD and MD) has led me think this is an overwhelmingly likely possibilty.

 

2) A privately investigation ofmy ASD, because the NHS  just wasn't prepared to refer  me to a specialist centre for this. If I could only get a proper diagnosis, then future consultants might be willing to take my communication problems into account (ie  bloody well read what i've written. as opposed to ignoring it and asking me questions instead!)

 

The  main consideration for me is that , failing a "miracle cure" 'm dependant on the state for providing my day-to-day living costs, healthcare and anything extra i might need in the future.  Thus, if i'm gonna go on being sick,  i really do need to be officially sick!or else i''ll likely wind up out on the street (after making myMum and sister  destitute!)

 

However, just getting that much is pipe dream, the way things stand  :(

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:( Horrible. I hear you on the diagnosis thing. Especially when it comes to issues like ASD. My middle son was diagnosed with ADHD when he was in kindergarten and our insurance was never willing to test beyond that when he got older and I started suspecting other issues. They refused a multitude of tests because he hadn't suffered any head injuries.

 

I hope you can figure something out....too bad doctors make it so damned difficult!

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:( Horrible. I hear you on the diagnosis thing. Especially when it comes to issues like ASD. My middle son was diagnosed with ADHD when he was in kindergarten and our insurance was never willing to test beyond that when he got older and I started suspecting other issues. They refused a multitude of tests because he hadn't suffered any head injuries.

 

 

you're in America? I have American friends who daren't disclose their ASD, because it might disqualify them from health insurance altogether...or  send premiums through the roof.  :(.  After much discussion, though nobody's convinced that we're better off in Britain, healthwise.

 

My Dad was within weeks of dying of a  metablastic melanoma, before  doctors  would believe there was anything wrong with him. When my mum asked for a brain scan, she was told she'd have to get it done privately, and she'd be "wasting her money". When he became too sick to travel to the surgery, they said there was nothing they could do for him if "he wouldn't come". They finally gave him the scan after being called out in the night becuse he was having seizures. He had two very  large brain tumours. If he'd been living alone, he would have simply died of neglect, i suppose.

 

Sadly, I've no reason to think my Dad's case is unusual.The NHS seem to give(arguably)  good service for a select few  illnesses only...assuming you manage to get diagnosed with them! To get back on topic - i note that at no point was I ever offerered a biopsy  on account of my GI problems, not even back when celiac disease looked like a pretty solid bet   (i was actually told, by a gastroenterologist,  that  there was no other possible cause for reactions to gluten). Biopsy looks to be standard procedure elsewhere.

 

Hmm. I tell  a lie. That cancer specialist would've offerered a biopsy, but since he and I agreed that we were barking up the wrong tree, and since he could only investigate signs of cancer, it was pointless. If it was an ulcer, as somebody plausibly suggested, i guess I'm pretty damned lucky that it healed.

 

jay :)

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I had no idea about the nerve tooth thing and your information is very interesting to me. I have always had good teeth but started to have pain inside my teeth. Then gum swelling and pain but no signs of periodontal disease or cavity. Dentist didn't do anything...said there was nothing to treat. After a year of this nagging nerve pain, my teeth started to decay very rapidly. I got a root canal...the pain stayed. The exact same pain in the next tooth over. The next few months that tooth went. I think it is Celiac related because all my other symptoms were happening at the same time.

All tooth pain is gone now that I am gluten free.

I have had two huge episodes of rapid tooth decay, both happened during pregnancy. I think my body was fighting to give the baby the nutrients and my teeth suffered the vitamin deficiencies C and D and Calcium? These are the things you made me recall with your post. Celiac effects everything.

I so hope you get better fast and that it really is all gluten related and not MS.

I'm glad someone gave you the gluten ataxia article. We always thought clumsiness just ran in our family! Well that's kinda true but it isn't just clumsiness...it's Celiac gluten ataxia.

No end to the evils of wheat.

excuse belated reponse! (i've been absent from this forum, past 2 yesrs)

interesting info!

 

I just want to clarify, I'm not worried about MS (since an MRI scan - albeit arguably- ruled that out) just saying that if gluten can cause MS (which appears to be a perfectly respectable theory) then no reason why it can't cause TG, by the same mechanism (demyelination). That would neatly explain why early-onset TG can be a sign of MS wouldn't it? I mean, i just roped MS in to support my argument . Sorry if that  muddied the waters!

 

jay  :)

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      http://www.nbcnews.com/nightly-news/video/celiac-disease-affecting-millions-of-americans-often-goes-undiagnosed-692131907739   This was on last Tuesday. So happy that a popular national news program is spreading good information!
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      I am so angry. I am all about universal screening for Celiac Disease. It is a tricky disease to diagnose. Your only symptoms may be joint pain, depression, or weak nails, which people will try to cure with medication or a good manicure. With roughly 80% of the Celiac population remaining undiagnosed, universal screening could save thousands of lives. This article popped up in my twitter feed regarding US physicians who are unsure whether universal screening would provide “health benefits” for those who exhibit no symptoms (http://www.reuters.com/article/us-health-celiac-screening-idUSKCN0XU2G6?utm_content=buffer3ed50&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer) First of all, no symptom is a symptom! There is something called “Silent Celiac Disease”, and I personally know several people who have it. They experience no outward symptoms caused by gluten consumption, but their insides are being torn apart. If they eat gluten, they may not feel it, but they are highly at risk for long term complications such as cancer, miscarriages, and osteoporosis, just to name a few. Also, let’s consider the non-GI related symptoms of Celiac. Doctors, how many times does someone walk into your office and say, “Gee, Doc, could you test me for Celiac Disease? I have (insert one of the following)”: asthma bladder infections dental problems dandruff high blood pressure headaches blurred vision leg cramps back pain pale skin brittle nails acne bad bread mood swings ADD Anxiety Depression a short temper night terrors panic attacks irrational anger sinus pressure Those are just a few of the symptoms that people don’t think to associate with Celiac Disease, and I’m sure that you, Mr. Doctor, will not test someone with Celiac Disease if they have dandruff. This is why so many people are undiagnosed! People do not recognize the symptoms and doctors won’t think to give them a blood test. This is why I always say – You cannot know that you do not have Celiac Disease until you get tested. “One concern with widespread screening is that biopsies aren’t risk-free and may confirm cases of celiac disease that weren’t causing problems for patients and didn’t necessarily require treatment, Krist noted.” WHAT?????? First of all, most Celiac screening starts with a gene test or a blood test. That aside, ALL confirmed cases of Celiac Disease require treatment!! Untreated Celiac Disease can cause many problems in the future. “Guidelines for gastroenterologists recommend celiac screening for people with a close relative with celiac and for diabetics who are at increased risk for the disease, Murray said by email.” I was the first person in my family to be diagnosed. 80% of Celiacs don’t know they have it. I would have never been diagnosed if my gastroenterologist said, “Well you don’t have diabetes and no one in your family has it….” No one in my family had heard about Celiac Disease, let alone had been tested for it. And we have all of the tradition GI symptoms. This is not a rare disease. About 1% of the population has Celiac Disease. Take a look at your facebook friends list – have 500 friends? Odds are that you know four or five friends with Celiac. MAYBE one of them will be diagnosed. Maybe. The others will be suffering in silence. “The USPSTF, a government-backed independent organization that reviews medical evidence, issues recommendations that are closely watched by doctors and insurers. This is the first time the USPSTF has weighed in on screening for celiac disease, and the task force will accept public comments until May 30 before releasing final guidelines.” This brought me to the USPSTF website. In their draft, here is what is listed as “Potential Harms” of screening in asymptomatic populations. I’ve included my response: False positive – there are rarely false positives Unnecessary serologic tests and biopsies – umm…only do a biopsy if you have a positive blood test. And what’s so bad about a blood test? Anxiety of complications from testing – I had much more anxiety in my pre-Celiac days, not knowing if I would poop my pants at work. “Some patients with positive serology who do not undergo histologic confirmation may embark on efforts to avoid dietary gluten, which can increase costs and burdens and may result in decreased quality of life” “– I’m glad that you think my life is so terrible. “Limited evidence from long-term followup studies have shown that some persons with biopsy-confirmed celiac disease may never develop symptoms or complications” – I’m not going to risk getting cancer, are you??? The USPSTF is taking public responses to their draft, all of which must be submitted by May 30th. I highly urge you to write in and explain why universal screening is important. My Celiac diagnosis saved my life. If universal screening can do the same for a huge portion of the population – I am all for it. This could be the most important thing you do for Celiac Awareness Month. Read the draft and write to the USPSTF here. http://www.uspreventiveservicestaskforce.org/Page/Document/draft-recommendation-statement150/celiac-disease-screening
    • New to this--first gluttened exp. How to feel better?
      Just adding to what others have said.  It does take some time but it's likely you will start to feel better.  It took me about a year but now I feel great.  A good probiotic might help.  I use one from Synergy that my naturopathic doctor sells at her office.  I have gotten in the habit of emailing restaurants before I try them and have had very good luck.  One owner of a very popular restaurant in my area took the time to reply and said she had Celiac disease (she sent great detailed info about their food).  Many of the people responding will even tell you who to ask for when you come in.  Good luck and hoping you feel better soon.
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      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
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