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kellykay

Member Since 05 Apr 2010
Offline Last Active Aug 25 2010 05:29 PM
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Posts I've Made

In Topic: Formal Diagnosis: Is It Worth It?

25 August 2010 - 05:26 PM

Muscle weakness, at least if it is associated with peripheral neuropathy, is common with gluten intolerance. Nerves, particularly in your extremities can be affected with tingling, muscle weakness, and sometimes pain.


Not a peripheral neuropathy issue.. that would be too simple... I am trying to get a hold of my blood tests.. I had a celiac panel done in april ... never heard anything so i figured it was negative.. might be a good idea to make sure... it wouldn't be the first time something was over looked..

In Topic: Formal Diagnosis: Is It Worth It?

23 August 2010 - 06:52 AM

I am pondering this question myself... and part of me thinks a OFFICIAL DX is not worth the pain and torture to get it My blood panel was negative...

I have some very unexplained health issues (muscle weakness) and I can't help but wonder if it is celiac causes it.. and all my drs are in Diagnosis mode.... its so confusing...

In Topic: Severe Muscle Weakness. Unknown Cause.

06 August 2010 - 02:36 PM

Sorry think this is a bit of an old thread.... but I am currently waiting to be seen by a MG specialist.. they don't think I have MG but need to rule out another condition that affects the neuromuscular junction as well.. the type of weakness is alittle more consistent as well as progressive.. (Lambert Eaton Syndrome) which even rarer the MG and even harder to dx....

I have been battling progressive weakness for over five yrs now... I have had dozens of emgs ( that show alittle something??!!) but my muscle biopsy was normal
I even had the neuromuscular specialist at the time try and send me to a shrink.. he thought it was all in my head....

I have been tested for everything under the sun even had the blood work for celiac and lyme disease you name it.. I do have Sjogrens Syndrome but they tell me that my weakness isn't related.

Low and behold I was at the Canadian conference for sjogrens and they were talking about a connection between Sjogrens and Celiac..I have been told I have IBS and when I was given steriods my problems went away.. so I thought I had more of a IBD... but after coming to this site I have learned that steroids help celiac and the blood testing isn't reliable

I took it upon myself to go gluten free because I have always known I cant tolerate wheat well.. and I have gotten alot better but there is so much wheat contamination in this house I feel like I am fighting an uphill battle... My weakness seemed to stablize a bit but not for long maybe the little bits of gluten I am getting....

My dilemna is... do I go back to eating gluten to get tested via biopsy.. do I really need to know that this is the issue... If I am strict enough with the diet will my weakness get better..... I had read somewhere that Celiac itself will cause severe weakness... in rare cases...

I guess I am looking for a miracle.. I can't understand how someone could have such severe weakness and the drs cant figure it out... its nice to know I am not alone here but still the whole thing is fustruating

In Topic: Rice Works Chips

30 May 2010 - 05:46 AM

I have reacted to these chips as well.. I don't have a celiac dx but definetly notice that gluten free makes a huge difference for me.... I also have an issue with soy too.. maybe thats why

In Topic: Negative Test

21 April 2010 - 07:29 AM

I just had the test done in Ontario.. it is only covered if it is done in a hospital setting... Otherwise the outpatient lab costs 105 where I had it done.. its been a week and I still haven't heard back