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I Don't Suppose I Shall Ever Get Diagnosed, Shall I?


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#16 mommy2krj

 
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Posted 27 July 2013 - 07:57 AM

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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#17 jaywalker

 
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Posted 27 July 2013 - 11:09 AM

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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#18 mommy2krj

 
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Posted 27 July 2013 - 07:24 PM

:( 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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#19 jaywalker

 
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Posted 28 July 2013 - 01:57 AM

:( 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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#20 jaywalker

 
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Posted 28 July 2013 - 02:28 AM

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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