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Finally Got Into Rheumatology Triage


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35 replies to this topic

#31 GottaSki

 
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Posted 10 May 2013 - 05:49 AM

here is the last two years...the forum wouldn't let me post enough smiles to represent all four years of healing in one post!

 

:( :angry: :angry: <_< <_< <_< <_< <_< <_<  <_< <_< :mellow: :mellow: :) :) :D


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


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#32 nvsmom

 
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Posted 10 May 2013 - 07:12 AM

Just realized the smilys on this forum are perfect for describing the emotional roller coaster of the celiac that takes longer to heal:

 

:rolleyes: :rolleyes: :rolleyes:  :o :o :o  :huh: :blink: :blink: :wacko: :unsure: :angry: :wacko: :angry:

 

That is so true!  LOL  This is what I felt when I read that;

:huh: :o :) :D :lol: ^_^

 

Thanks again, Lisa. You've been a great support. It's amazing how much people I have never actually met have been a help to me.


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#33 Renaye

 
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Posted 11 May 2013 - 04:25 AM

nvsmom

I have also been to a rhuemmy doctor.  I have a positive ANA but nothing else.  I have mouth & nose sores, dry eyes & mouth, mild joint pain in my hands and feet, crazy GI tract - terrible constipation and terrible fatigue.  Diagnosed initially as "sicca" but put on plaquenil.  Plaquenil has helped me get out of bed and go to work.  I am not normal and I can see a cycle of symptoms.  I have no official celiac or sjogrens diagnoses but on my paper work, my diagnoses are celiac and sjogrens?? Not sure how much the gluten-free diet has helped but I am too scared that I may get something else, so I eat gluten-free.

 

Please don't give up, if you know something is not right, find a doctor that will treat your symptoms.  AI stuff comes in bundles.  You don't just get one, you may get three.

 

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.

#34 nvsmom

 
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Posted 11 May 2013 - 07:55 PM

Lol You are so right Renaye, I already have three. ;)

I am glad you have found help with the plaquenil. I hope the gluten-free diet is able to help too. :)
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Nicole Posted Image

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Hypothyroid - August, 2012

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#35 Gemini

 
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Posted 13 May 2013 - 05:29 AM

nvsmom

I have also been to a rhuemmy doctor.  I have a positive ANA but nothing else.  I have mouth & nose sores, dry eyes & mouth, mild joint pain in my hands and feet, crazy GI tract - terrible constipation and terrible fatigue.  Diagnosed initially as "sicca" but put on plaquenil.  Plaquenil has helped me get out of bed and go to work.  I am not normal and I can see a cycle of symptoms.  I have no official celiac or sjogrens diagnoses but on my paper work, my diagnoses are celiac and sjogrens?? Not sure how much the gluten-free diet has helped but I am too scared that I may get something else, so I eat gluten-free.

 

Please don't give up, if you know something is not right, find a doctor that will treat your symptoms.  AI stuff comes in bundles.  You don't just get one, you may get three.

 

Renaye

Renaye......sounds like you do indeed have Celiac and Sjogren's.  Both AI diseases can be hard to diagnose and do not always show up on blood work.  I have Celiac, Sjogren's, Reynaud's and Hashi's thyroid disease.  I also have high ANA and RF but that can be caused by the any or all of my AI problems.  However, and this is important, I have been gluten-free for 8 years now and I am very strict with my diet.....never, ever cheat.  My numbers are coming down, over time, slowly but noticeably.  The longer I am gluten-free, the better I feel and the lower my numbers are.  I do not see a rheumy because I do not do meds.  I also have no overt symptoms anymore, just elevated bloodwork. 

 

Please stay strictly gluten-free because you will get better.  You may be able to get off the meds too but it does take a long time.  Healing is very possible with the right mindset and good nutrition.  Good luck!


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#36 Renaye

 
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Posted 15 May 2013 - 06:15 PM

Gemini,

Thanks for the encouragement. It is really difficult at times especially since I am intolerant to peanuts, eggs and dairy also. Hopefully everything will get better. Sometimes it is hard to stay positive when you read all of the "what if's" that you can get or possibly have but don't know it yet.

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.




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