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Doctor Is Suggesting Lupus ?


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12 replies to this topic

#1 jhol

 
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Posted 22 July 2013 - 12:48 PM

is there anyone on here that knows anything about lupus?

 

is there some kind of connection with celiac/ncgi?

 

ive googled it  and it does seem to cover many of my symptoms including the face rash.just gotta wait for the blood test results now

its odd but im so hoping its positive-coz then at least i,ll have some sort of answer and can start to sort myself out


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#2 nvsmom

 
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Posted 22 July 2013 - 03:48 PM

The main link to celiac disease is that they are both autoimmune diseases, and a gluten sensitivity can bother symptoms of lupus/SLE.

I suspected lupus in myself too and my GP agreed. I had 4 of the 11 diagnostic criteria but by time I got into a rheumy, my symptoms had improved so much that I had nothing to show them. My blood tests (besides ANA in the past) were negative too. The rheumy thought my facial rash, arthralgias, fatigue and mouth ulcers were all caused by celiac disease... I hope she is right.

Have you checked the diagnostic criteria? http://www.lupus.org...?ArticleId=2241

Good luck with the testing.
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#3 NorthernElf

 
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Posted 23 July 2013 - 06:11 AM

Right now Lupus in on m list of things getting checked out.

 

There are several problems with getting Lupus figured out - it may take awhile for the bloodwork to catch up with the symptoms (ie. you can have symptoms but clear bloodwork). It is the "disease of a thousand faces" - it is quite variable in its presentation.

 

You never said what your symtpoms were, in addition to celiac, but mine include intense joint pain, fatigue, dryness, some muscle pain, etc. It's a long haul and if it is lupus, well heck, that's not great either. Keep at it, keep searching, see who you need to see to get help & live a 'normal' life.


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#4 jhol

 
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Posted 23 July 2013 - 10:27 AM

hi thanks for answering,

 

im not celiac, all my tests have been negative up to yet. i was 99% sure i was so i went gluten and dairy free anyway. i had about 6 weeks feeling fantastic and its been downhill from there. had to give up nightshade veg as well coz i felt they aggravated my joint pain and made my face and palm rash worse.i even had allergy tests and they showed nothing.

 

my symptoms are exactly the same as yours northern elf, the joint pain is the worse. i very rarely have any gastro problems at all. just need some answers now, im getting really fed up.


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#5 NorthernElf

 
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Posted 24 July 2013 - 06:20 AM

Keep plugging along....guess it's really all one can do !!!

I am on my way to a rare blood disorder clinic next month because my IgG levels are low (immunodeficiency). Right now that's all we got to go on. I have been gluten free for 11 years and have had severe, symmetrical joint pain and fatigue issues for almost 3. I have seen 2 rheumatologists and a neurologist. I have also had pneumonia a year and a half ago and several chest infections since, which is why they measuered my immunoglobulin levels.

 

I was reading somewhere that when a doc tells you he has run 'all the blood tests' that's not true.......there are many....what he is really saying is that he has run the common ones.

 

I tested negative for celiac too (bloodwork) but consider myself a celiac because I am very sensitive to gluten, can't eat it without getting quite sick. Celiac or gluten intolerance can be linked to autoimmune conditions like Lupus, Rheumatoid arthritis, etc.

 

I wish you the best of luck - and some answers !


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#6 Renaye

 
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Posted 24 July 2013 - 06:43 PM

I have a positive ANA and messed up bloodwork.  They tell me I have "sicca" which is dry eyes, skin and mouth along with fatigue and mild joint pain.  It could develop into lupus or scleroderma.  So far what I have read is that I have sjogren's disease until something else changes the diagnosis.

 

Hope you get some answers.  I am on plaquenil and my fatigue is MUCH better. 

 

Renaye


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Positive DGP IgG & DGP IgA, negative biopsy, HLA typing unable to interpret, sicca syndrome, positive ANA, low WBC count, intolerant to peanuts, eggs, dairy, IBS-C, GERD.

#7 a1956chill

 
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Posted 25 July 2013 - 02:13 AM

One of the first things my endocrinologist  did  when I was first referred to her was  ANA testing , it came back positive but negative for lupus  . My hashimoto antibodys were high ( read off the chart .lol)

Both my daughters (both diagnosed celiacs) ANA testing  came  positive but negative for lupus .


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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#8 BeccaMeadows

 
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Posted 27 July 2013 - 02:42 PM

According to my doctor if one has an autoimmune disease like celiac, you are more likely to have another autoimmune disease, although it isn't necessarily so.  Even if you aren't diagnosed as celiac, but did find it helpful for a bit, maybe try sticking to it until you get an official diagnosis. 

 

I'm currently in a similar boat.  Diagnosed celiac, but still sick and waiting for results from ANA testing for lupus. 


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#9 nvsmom

 
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Posted 27 July 2013 - 08:57 PM

ANA testing is tricky. It can be caused by other AI diseases like thyroiditis and possibly celiac disease, and it's numbers can change. I have had a positive ANA in the past on different occasions but it has been normal for over a year.

A positive ANA is a clue, it is not definitive.

Good luck with the tests.
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#10 jhol

 
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Posted 28 July 2013 - 12:44 PM

kinda got some results, 

 

the nurse rang and said some of the tests are borderline and i need to have tests in 6 months, my b12 is low and i have to have tablets for a month to see if it changes. and they couldnt do all the tests coz they ran out of blood??? so i have to go back on tues to have more blood tests!!

 

so i dont know if this happens a lot or if they are just stalling me,or rechecking some results. who knows!- im trying to chill out and not get too wound up about it. 


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#11 Gemini

 
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Posted 29 July 2013 - 10:54 AM

I have a positive ANA and messed up bloodwork.  They tell me I have "sicca" which is dry eyes, skin and mouth along with fatigue and mild joint pain.  It could develop into lupus or scleroderma.  So far what I have read is that I have sjogren's disease until something else changes the diagnosis.

 

Hope you get some answers.  I am on plaquenil and my fatigue is MUCH better. 

 

Renaye

Renaye.....I have Sjogren's, Celiac, Hashi's and Reynaud's Syndrome.  If you have one AI disease, including Celiac, it can raise your ANA.  Most doctors do not know this, as hard as that is to believe.  You sound like you have Sjogren's, most defintely, and having elevated ANA/Sjogren's does not mean in any way you will end up with Lupus or anything worse.  My ANA was ridiculously high and it has been slowly coming down over the past 8 years...funny enough, the longer I am gluten free.  I do not see a Rheumy because too many are Debbie Downer's and act like you will keep popping for AI problems.  I take nothing for my AI diseases except thyroid hormone and Restasis eye drops for the dry eye.  You may want to try it as it does work wonders for the dry eye problem.  It doesn't make it go away but my eyes are 80% better using the Restasis. 

 

Above all, stay positive and don't let them load you up with too many meds.  It will aggravate the Sjogren's.


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#12 Renaye

 
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Posted 30 July 2013 - 11:13 AM

Gemini

Thanks for the suggestions. I have a wonderful rhuemmy doctor that believes that my disease was caught early. I am not on many drugs. The plaquenil has helped me get out of bed in the mornings and for a while, I couldn't. I was in such terrible shape for a while, with pain, fatigue, gluten, egg, dairy and peanut intolerances that I was started on an anti-depressant. It is a wonderful thing not to cry every day to work and not worry that you are going to die. I do have symptoms of scleroderma, but no skin hardening so that is always a frightening thing for me to deal with. Generally, I am feeling better than I have felt in 3 years and for me, that is great.

I did try restasis but my eyes swelled up and the doctor took me off of it. So I have eye plugs and they are wonderful.

Thanks and take care!

Renaye
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Positive DGP IgG & DGP IgA, negative biopsy, HLA typing unable to interpret, sicca syndrome, positive ANA, low WBC count, intolerant to peanuts, eggs, dairy, IBS-C, GERD.

#13 Gemini

 
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Posted 31 July 2013 - 09:18 AM

It's always funny to hear the different reactions that people get from different treatment options.  The eye plugs did squat for me...no difference at all but the Restasis worked wonders.  Go figure!  Glad to hear you feel better but that will happen anyway once you remain gluten-free for a while.  A lot of the symptoms of these issues overlap so figuring it all out can be daunting.  But the fact you notice such a big difference already is a really good sign.  Hope your recovery continues

well!  :)


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