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Testing For Lupus And Other Blood Clotting Disorders?


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9 replies to this topic

#1 Blue-eyed bandit

 
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Posted 05 April 2012 - 02:41 PM

So lately I've had so much going on and it's just beginning to be too much. So in the past 6 months- benign PVCs/PACs and possible SVT, celiac, ovarian cysts, and now possibly lupus or some other issue. Went to dermatologist because I go yearly for mole/freckle checks and she noticed a lacy looking like rash that's on my ankle and creeps up a bit. It has been there for 3 years and comes on especially after showering. She said she's running my c and r proteins and antiphosolipid (?) and testing for lupus and other blood clotting disorders. Said I may need to be on a baby aspirin daily. So... Haven't gotten blood drawn yet but definitely nervous and just feeling overwhelmed. I don't know much about the disorders she told me but from what I've read it's scared me silly. Anyone else have this lace-like skin in certain places and was it lupus or something else???
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#2 ravenwoodglass

 
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Posted 05 April 2012 - 02:52 PM

I had something called livedo reticularis since childhood. What your describing sounds like that. At first it appeared just when I was cold but later it was a constant. It took a few months gluten free for it to resolve. You do have a good doctor to be making sure it isn't a symptom of another condition. It may go away on it's own though once your inflammation from the celiac goes down. Try not to worry to much and just follow up with your doctor.
Interestingly when I got acupuncture a short time before I was diagnosed I would go in purple but when the session was over the pattern was gone. It would return later in the day.
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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)

#3 Marilyn R

 
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Posted 05 April 2012 - 03:47 PM

I think you have an exceptionally good dermatologist. I have tested positive for lupus from two deep skin biopsies but went undiagnosed for several years, even though I had the "wolf bite" lesions and had been seeing a derm for years. My sun exposure lupus rashes were lacy, I always said, wow, look at that roadmap on my thighs.

If you're dermatologist suspects it, that's good news, you only have a 10-15 percent chance of having systemic lupus. You're gluten free already, and that's helping. Sun protection is paramount. You must apply good sunscreen (I recommend Vanicreme 60, my new derm says it has both of the necessary ingredients to be effective, and is hypoallergenic, and, I learned about it in the DH section of this forum. I like the Ultralite Neutragena 65 for my face. It isn't as heavy and doesn't make me sweat. You need to reapply sunscreen several times throughout the day, and buy a good hat or two (I have several) with high SPF. Coolbar is a very high rated shopping site, and I've been not just happy, but thrilled with my purchases from them for SPF clothing. The American Lupus Foundation is a great site for learning, I hope you'll check it out.

I bought a Tilley Hat, but they're pricy. They're rated at SPF 80. They have a kind of cult following.

It's overwhelming at first, but just realize that you can't have sun. You can be in it, but have to protect yourself very consciounsly, like applying the sunscreen several times a day.

I wear a hat with SPF everyday. You'll be surprised at hat behavior. Women will pluck your hat off to try it on. I used to let them do that, but I don't think it's a good idea. Yuck! What if they have lice?

If you have the same kind of lupus that I do (there are many forms, so I don't know, it's just that your autoimmune system is attacking your skin, and it's triggered by sunlight.) The only time it is safe for you to go outside without a very good sunscreen or sun protective clothing is at night. I live in the sunshine state and am coping with it fine, getting diagnosed was a blessing, not a curse. I knew there was something else making my autoimmune system crazy.

I can't say that I wasn't angry about learning about it though. It's completely normal to feel that way.

Good luck to you, sending you (((( )))) hugs and good wishes. I'd go ahead and take sun precautions now vs. waiting for lab results, it involves a little more shopping but is controllable if you mind your P's and Q's. It's not uncommon to develop other autoimmune diseases once you have one. I don't know if you have Lupus too, but I'm a Lupie and coping with it just fine. :)
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#4 Blue-eyed bandit

 
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Posted 05 April 2012 - 04:35 PM

Thank you so much for the reply. I've become so scared it's lupus and I'll have to get a kidney transplant or worse... Its ridiculous but I'm so nervous. I already cover completely - the only body parts I expose are my feet and hands. J have raynoulds disease and my lacy like rash only shows up after a hot shower. I get a sun rash when in the sun too long but it's been that way since childhood. I'm just absolutely terrified of having lupus! How do you stay so positive and without the fear. Many of my symptoms are signs of lupus but could be other things and I've heard that's how lupus is: very dry skin, heart palpitations, raynoulds, lacy rash just on feet but by ankle and fatigue. I've been gluten-free for 2 years with cheating because I thought it was just wheat allergy and full blown gluten-free since diagnosis.
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#5 Marilyn R

 
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Posted 05 April 2012 - 05:40 PM

You caught me at a good time, lol, because I just got glutened three days ago off a gluten-free menu at a national chain restaurant. I believe you should not ever frigging cheat on the gluten-free diet, no matter what! That is really your first line of defense.

Worrying, stress and anxiety can be triggers for Lupus, so you have to try not to go there.

Internet research is great for some things, but it can make you worry about irrevelant things too. If you've been seeing competent doctors and have normal blood draws, I think you're going to be okay with taking some extra precautions about ultraviolet light.

You asked me how I stay positive, I absolutely was pleased with how much better I feel once I found out I had lupus and that it is ultraviolet light that was aggravating me.


I'm still not laying in a bed of roses, but I'm not picking thorns out of my skin.

:D
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#6 Blue-eyed bandit

 
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Posted 05 April 2012 - 07:15 PM

Yes but is your lupus sle lupus or just the disorder of the skin?? I'm worried I may have full blown lupus but who knows. I wish I was positive like you.
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#7 ravenwoodglass

 
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Posted 06 April 2012 - 03:55 AM

Yes but is your lupus sle lupus or just the disorder of the skin?? I'm worried I may have full blown lupus but who knows. I wish I was positive like you.


Please try not to worry too much until the test results are in. Do you have the hallmark butterfuly rash on your face? If not try to put your concerns to the background until after you get the bloodwork done. The symptoms you are referring to could all be related to the celiac and if they are you really need to be strict with the diet and patient with your body until you heal.
  • 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)

#8 Marilyn R

 
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Posted 06 April 2012 - 04:38 AM

Yes but is your lupus sle lupus or just the disorder of the skin?? I'm worried I may have full blown lupus but who knows. I wish I was positive like you.


I don't know yet if it's systemic. I have an appt. with a rheumatologist later this month, it took awhile to get in as a new patient. Until they tell me otherwise, I don't have it. :D

Doing the "What if ..." mind game is pretty counterproductive to my state of well being, so I really try to stop myself from doing that. If it does end up being SLE, I'll deal with it. They have treatments for it. I've had some bizzare lab values after work ups from specialists. They'd give a diagnosis and I'd ask them to repeat the blood test and then I'd come back in normal ranges. So maybe it is systemic. If it is, it is and that's so much better than not knowing. Good luck to you.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#9 Blue-eyed bandit

 
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Posted 06 April 2012 - 05:03 AM

Thank you all so much for your positive attitudes and replies. It means more to me than I could really put into words. I'm just so stressed lately with so many things coming on me in the last 6 months and have remained positive until yesterday when I was told I needed to be tested. No I don't have the butterfly rash- my symptoms are mottled skin when cold- but not always and a small lace like race that pops up after shower is usually when it occurs. I have other symptoms as well but they could be so many other things- raynoulds I do have but have never been formely diagnosed.
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#10 Marilyn R

 
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Posted 08 April 2012 - 04:30 PM

It is overwhelming. You're going to be okay though. When I get overwhelmed, I sit down with a piece of paper and write down what's important now.

About three years ago my DP and I were at the golf course and I got really frustrated because I wasn't playing well at all. He told me that it wasn't all about getting the ball in the hole. He said it's about being outside and seeing the wonderful birds and the beautiful clouds in the sky. I'm pretty sure I had lupus then, and I was unprotected SUV wise. I haven't developed anything horrid and I'm in my mid 50's. My left ankle is purple and has the rash. My brother and massage therapist noted it, but even though I've been to a slew of specialists, it went unnoticed. So again, I think you're seeing a very good dr.

And I still go to work everyday, packing my lunch. You're going to be ok. :)
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.




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