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Got Results Back Its Not Lupus


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#1 jhol

 
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Posted 06 August 2013 - 11:29 AM

so once again i get a negative result!!!

 

not sure how long i can cope with all this .im so fed up at the moment. i dont have lupus but my blood sugar is a tiny bit high ( the nurse said its hardly worth commenting on)- but they are gonna do a diabetes test anyway. my b 12 is low so ive got some tablets to take. when the doc was looking at the computer i was having a sneaky read - my b12 was 138!! i thought that was really low- so now im taking tablets for 3 months with no way of knowing if they are being absorbed or not.

she has said that shes refered me to a dermatologist for the rashes which is good- hopefully i,ll get some answers from them.

i did think i saw a few abnormals on the test results when i was having a sneaky peek so im gonna ring up tomorrow and ask for copies and copies of the last one that had the celiac tests on. that should be interesting to see exactly which tests they did.

 

so ive had my moan lol. hope i get some answers soon..

 

 


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#2 mommida

 
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Posted 06 August 2013 - 01:44 PM

I'm glad to hear that it is not Lupus.

 

There is enough evidence to show that gluten is "more complex" for the human digestive track and that auto-immune disorders do better on a gluten free diet.When your testing is complete, try a gluten free diet.  If you feel better not eating gluten, then don't eat it.  Your body's reaction is a "scientific" proof.  (You will unfortunately have an accidental glutening that may prove this.)


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#3 ravenwoodglass

 
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Posted 07 August 2013 - 03:07 AM

Low B12 can really mess with your nervous system and more. Hopefully the tablets you are taking are sublingual. Sublinguals are absorbed by the mucus membranes in your mouth and bypass a damaged gut. Hope you get some answers soon and once your celiac testing is finished be sure to give the diet a good strict try for a bit.


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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)

#4 nvsmom

 
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Posted 07 August 2013 - 06:55 AM

Celiac can mimic lupus, there are a handful of us around here who thought we had it because our symptoms were the same. Luckily, if it is celiac disease, our symptoms will improve over time (years). It's toughto have no diagnosis because we aren't given meds to treat symptoms in the short term, but at least we have the potential to get better in the long run.

 

I hope you feel well soon.


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#5 jhol

 
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Posted 08 August 2013 - 11:41 AM

I'm glad to hear that it is not Lupus.

 

There is enough evidence to show that gluten is "more complex" for the human digestive track and that auto-immune disorders do better on a gluten free diet.When your testing is complete, try a gluten free diet.  If you feel better not eating gluten, then don't eat it.  Your body's reaction is a "scientific" proof.  (You will unfortunately have an accidental glutening that may prove this.)

hi thanks for answering

 

i am doing gluten free - since january. i felt fantastic at first then other symptoms kicked in. gave up dairy, soya and nightshades. but any testing i had done was all negative. i still have joint pain and so tired. but now im b12 deficient im now thinking that all my problems are down to that and maybe im not gluten intolerant at all. this not having a diagnosis is really getting to me. i did get my results off the doctor but theres only one test been done. dont know if you know anything about the tests but here's what was done.

. iga level       0.7          u/ml       (<6.9 u)        nk         normal


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#6 jhol

 
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Posted 08 August 2013 - 11:50 AM

oh forgot to mention that ive started to "grow" lumps on my middle knuckle of my middle finger. worst on my right hand but my left is starting to go the same way. thats why the doctor tested me for auto immune disease. but the only thing they,ve found is the low b12- dont know if the knuckle thing could be coz of that ?


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