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Have To Take Gluten


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11 replies to this topic

#1 UnhappyCoeliac

 
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Posted 03 January 2012 - 04:45 AM

I have meniere's joy.
The attacks of vertigo can write me off for up to 5 hours and I have migraines afterwards.
Low salt diet does nothing, Serc does nothing.
Stemetil seems to help, lower the tinnitus volume AND stop or prevent dizziness.
Stemetil has gluten and I am Coeliac.

Stemetil comes in a 5mg tablet would it really be that bad if I popped it every so often sometimes twice in tow days sometimes not for months? I have to take stemetil if it works.

Imagine yourself stuck a train station knowing if you stand up your will almost certainly topple over in peak hour :| Yes I definitely have to have stemetil, any thoughts? If rest of diet is strict?
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#2 dilettantesteph

 
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Posted 03 January 2012 - 04:52 AM

You can try taking the prescription to a compounding pharmacy to see if they can make it up for you without gluten.
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#3 electrochel

 
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Posted 03 January 2012 - 05:17 AM

Try Dapsone, its much better
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#4 ravenwoodglass

 
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Posted 03 January 2012 - 05:23 AM

Previous poster gave good advice. You could also talk to the pharmacist and see if there is another med that might be suitable. Be sure this is not gluten ataxia before you take the med as if you actually have ataxia the med may make it worse.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 Chiana

 
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Posted 03 January 2012 - 06:00 AM

Good suggetions above.

Have you tried a *high salt* diet? I'm serious - give it a try. I'm assuming you've gotten your b12 levels tested already?
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#6 UnhappyCoeliac

 
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Posted 18 January 2012 - 10:31 AM

thanks for replies not sure I have the money for specially made medicine and dont think they even do that, if i have to wait 6 months to see an ear doctor i somehow doubt my medicine will be specialy made.

ATM my diet is gluten free and I am popping a stemetil once a week at the end of the day vertigo is utterly crippling and coeliac for the moment I am aymptomatic so i guess in this case It is wise for me to rob peter to pay paul!

Im hoping the trace amounts and so low it does nothing
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#7 frieze

 
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Posted 18 January 2012 - 12:54 PM

I have meniere's joy.
The attacks of vertigo can write me off for up to 5 hours and I have migraines afterwards.
Low salt diet does nothing, Serc does nothing.
Stemetil seems to help, lower the tinnitus volume AND stop or prevent dizziness.
Stemetil has gluten and I am Coeliac.

Stemetil comes in a 5mg tablet would it really be that bad if I popped it every so often sometimes twice in tow days sometimes not for months? I have to take stemetil if it works.

Imagine yourself stuck a train station knowing if you stand up your will almost certainly topple over in peak hour :| Yes I definitely have to have stemetil, any thoughts? If rest of diet is strict?

It apparently comes in different forms, ie liquid, suppository, tablet....do all forms contain gluten?
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#8 ravenwoodglass

 
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Posted 18 January 2012 - 01:11 PM

thanks for replies not sure I have the money for specially made medicine and dont think they even do that, if i have to wait 6 months to see an ear doctor i somehow doubt my medicine will be specialy made.

ATM my diet is gluten free and I am popping a stemetil once a week at the end of the day vertigo is utterly crippling and coeliac for the moment I am aymptomatic so i guess in this case It is wise for me to rob peter to pay paul!

Im hoping the trace amounts and so low it does nothing


I noticed the way you spell celiac. Are you in Europe? IF you are be careful that you are not consuming gluten free items that are made with Codex Wheat Starch. Gluten Ataxia should be ruled out as the symptoms are similiar and those of us that have it can be very sensitive to even trace amounts of gluten.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 grayangel

 
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Posted 18 January 2012 - 02:26 PM

Obviously this will depend on what country you are in, but Stemetil is a brand name for prochlorperazine. At least in the US/Canada, prochlorperazine is also available as brand names Apo-Prochlorperazine, Compazine, Compro, and Nu-Prochlor. It may also be available as a generic. Any of these forms would contain the same active medication but may have different inactive ingredients (i.e. gluten). I realize the gluten content of medications is difficult to discern, but a different brand might be worth checking into with your doctor or pharmacist.
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#10 mushroom

 
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Posted 18 January 2012 - 03:01 PM

I am a Kiwi and I just checked Pharmac's schedule (which usually pretty closely follows Oz). They list only Stemetil too.:( They do not take coeliac disease into account when choosing medications to list - only price.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#11 hexon

 
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Posted 18 January 2012 - 07:08 PM

I am a Kiwi and I just checked Pharmac's schedule (which usually pretty closely follows Oz). They list only Stemetil too.:( They do not take coeliac disease into account when choosing medications to list - only price.


This may be a stretch but clonazepam (brand name Klonpin) has been shown to treat vertigo (off-label) at low doses. So you could try to get your doctor to prescribe it for anxiety if that is covered.
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#12 auzzi

 
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Posted 20 January 2012 - 02:15 AM

They list only Stemetil too. They do not take coeliac disease into account when choosing medications to list - only price.


Although Stemil tablets are gluten, both Stemil injections and suppositories are gluten free. Both were prescribed for my coeliac to stop vomiting and nausea, but she went with Pramin which is gluten-free. All types of Stemil are on PBS.

Pramin contains the active ingredient metoclopramide hydrochloride which does an excellent job preventing vomiting and nausea. $5-$10 for 25 on PBS or private prescription.
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