Update on my daughter

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mypearl
Regular Member


Date Joined Aug 2005
Total Posts : 215
   Posted 10/28/2009 5:47 PM (GMT -7)   
So I went and picked up my daughters labs and her ANA was positive. Her Rheumatoid factor was positive and a test called chromatin autoantibodies was high. Apparently, this chromatin test is positive in 75% of patients with lupus. I guess it used to be called LE. So where not totally out of the woods for lupus as well. The pediatric rheumatologist is reviewing the notes and we should be getting a call with in the week to set up an appt. Im not sure which is worse for her and if she does have both is she going to end up down the same path as me, where many of her organs are involved and she becomes disabled before she hits 40 like me. I feel bad because I know in my heart I passed this autoimmune on to her! sorry for venting. thanks for who ever reads this and please keep her in your prayers/thoughts. I dont want her to have both.
Lupus (SLE), fibromyalgia, T4/T5 & L fractures, hyperthyroid, pernisious anemia, Interstitial lung disease, vasculitis, neuritis, osteoporosis, gerd, APS, thyroiditis, complex thyroid nodules, asthma,  4 valve regurg., hemolytic anemia,


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/28/2009 6:27 PM (GMT -7)   
Keeping you in thought - remember that every case of Lupus is different, the disease of 10,000 faces.

"Quiet lupus" is a distinct possibility with the treatment plans being used today. Mine has been quiet (no ANA) for over a year. Learning to control food, exercise and sleep at a young age will keep her from the stress that seems to a big contributor for most of us.

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/28/2009 6:46 PM (GMT -7)   
mypearl said...
So I went and picked up my daughters labs and her ANA was positive. Her Rheumatoid factor was positive and a test called chromatin autoantibodies was high. Apparently, this chromatin test is positive in 75% of patients with lupus. I guess it used to be called LE. So where not totally out of the woods for lupus as well. The pediatric rheumatologist is reviewing the notes and we should be getting a call with in the week to set up an appt. Im not sure which is worse for her and if she does have both is she going to end up down the same path as me, where many of her organs are involved and she becomes disabled before she hits 40 like me. I feel bad because I know in my heart I passed this autoimmune on to her! sorry for venting. thanks for who ever reads this and please keep her in your prayers/thoughts. I dont want her to have both.


Hi mypearl,

Oh....I'm so so sorry to hear that lupus is even a possibility for your daughter! I myself have both RA and lupus (rhupus?). And I know exactly how you feel about passing along the genetic predisposition to developing AI diseases: two of my three daughters have autoimmune diseases (Robin has Hashimoto's thyroiditis and Cheryl has lupus and Addison's disease). In addition, both of my granddaughters have celiac disease.

Just as a side comment, everyone in our family has now gone gluten free, because apparently undiagnosed, untreated celiac disease is frequently the culprit behind multiple AI disease outbreaks in a single individual (see www.umm.edu/news/releases/zonulin.htm). Some research indicates that the gluten free diet can reduce the number of organ-specific autoantibodies in the blood stream, which may help to reduce the damage done. I just wish I had known about all of this stuff 30 years earlier!! :(

I will definitely keep you and your daughter in prayer!

(((hugs)))
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


mypearl
Regular Member


Date Joined Aug 2005
Total Posts : 215
   Posted 10/29/2009 7:24 AM (GMT -7)   
Thank you Lynnwood, yes my daughter sleeps alot, 12 hours or so. She eats lots of fruits and vege's. I know stress is a real indicator and at her age she does have that unfortunately. School was horrible before we moved. She had 2 1/2 hours of home work (no lie) every single day. So did all the 4th graders. She hated school before our move and of course the move. She also had a horrible PE teacher that would scream at her and any kid who wasnt running when they were suppose too. errrrrr!
Thank you nasalady for that web site. Im going to look into that as I have multi organ involvement from this lupus. Not sure what gluten is but Im willing for anything. Thanks for keeping her in your thoughts.
Lupus (SLE), fibromyalgia, T4/T5 & L fractures, hyperthyroid, pernisious anemia, Interstitial lung disease, vasculitis, neuritis, osteoporosis, gerd, APS, thyroiditis, complex thyroid nodules, asthma,  4 valve regurg., hemolytic anemia,


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/29/2009 11:55 AM (GMT -7)   
Hi again....

Gluten is a protein found in wheat, barley, and rye. People with celiac disease (an autoimmune disease) and non-celiac gluten intolerance react badly to gluten, but the symptoms vary wildly from person to person. They say that as much as 40% of the population may have some sort of problem with gluten.

Some people with celiac disease have gastrointestinal symptoms like diarrhea or constipation, bloating, cramping, weight loss or weight gain, etc.....usually doctors tell them they have IBS and don't bother to test for celiac. Other people have neurological symptoms, or a horrible skin rash called dermatitis herpetiformis, or even no symptoms at all (silent celiac). And the blood tests and intestinal biopsies have high rates of false negatives. This is why it's so hard to diagnose.

The best way to find out is to stop eating gluten and see if it helps you feel better. IMHO anyone with any type of autoimmune disease should be gluten free. Period.

Here's a link to a helpful post about exactly how to go gluten free, if you decide to try it:

glutenfreegoddess.blogspot.com/2006/01/morning-after-diagnosis-that-is.html

BTW, I just ordered a wonderful book called "The Gift of Remission: A Journey into Multiple Sclerosis and Back Again" by Linda Land. It's all about how her husband's MS went into remission when they went on a very strict diet; it is a gluten free diet, but it is much more strict than that. They cut out ALL grains, not just wheat, barley and rye. They also cut out dairy products, eggs, beans and legumes, and members of the nightshade family like tomatoes and potatoes. Basically they only eat fruit, certain veggies, nuts, and meat, poultry, and fish.

This is the so-called "hunter-gatherer" diet or Paleo diet, which means it's the way humans ate before they learned to farm. Apparently scientists and medical researchers are starting to believe our bodies work better when we eat that way because hunter-gatherer societies don't develop the diseases that we do (like autoimmune diseases!!).

It sounds difficult....but I'm just about at the point where I'll try anything to feel better!

Anyway, best wishes to you and your daughter....I will pray!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/29/2009 6:16 PM (GMT -7)   
When trying ANYTHING, please make sure to let your doctors know everything that is changing in your daughters environment. Things that seem meaningless to you may be huge clues for them in adjusting medications and tracking the effects the medications are having.

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


skydev09
New Member


Date Joined Nov 2009
Total Posts : 1
   Posted 11/3/2009 9:46 PM (GMT -7)   
Hey guys!

Im new to this forum thing but I am hoping to get some help and some answers. I was diagnosed with Lupus in 2006. I have not had major problems until recently after the birth of the second child eight months ago. Now I am in so much pain I cant get out of bed. I have been on 4 rounds of Prednisone with no luck. The doctor just wrote a script for Percocet to help ease my pain until I can see the rheumatologist on the 16th. I do have a question though. I am currently taking Prisitq for depression. Could that possibly be causing my flare up? I know that the 60 pound weight gain from my pregnancy isnt helping the matter but I really wasnt in extreme pain until a few weeks or so after I started the Pristiq. Another thing bout the gluten. Does it help to keep lupus in remission. I dont have any major organ involvement yet just the bad joint pain and stiffness and swollen glands and minor things like that but I will try anything to help keep this pain away and be able to lose this weight and enjoy my 2 kids for as longs as I can. Cause right now all i want to do is sleep which is impossible when you have 2 kids under 3, full-time job, and finishind college. Plus I am only 23 years old, im not supossed to be having these problems right? Also a question for mypearl! What kind of trouble was your daughter having when you decided to take her to the doctor. Cause my daughter is 3 and since lupus and RA run on both sides of our family I want to watch her closely! Hope everything works out for the best with you and your daughter. Ya'll are in my prayers and remember God doesn't give you more than he thinks you can handle! Please help me answer some of my questions becasue I dont know how much of this I can handle. I am so depressed with nobody to talk to that understands what im going through. Help me please!!!!!!

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 11/3/2009 10:28 PM (GMT -7)   
Hi skydev09,

I really feel for you....it's terrible to be in constant pain with no medications helping. You are definitely too young to be feeling that bad!! I'm so glad you've found this group....we do understand what you're going through and we will listen!

I don't know much about Pristiq, although I guess if it's the only thing that you're doing differently it could be at least part of the problem.

As to the gluten free diet, you may want to look into and decide for yourself. The latest research indicates that untreated celiac disease can lead to the development of other autoimmune diseases (www.umm.edu/news/releases/zonulin.htm). I'm convinced that it did in my case. But that's probably not the only way that AI diseases can occur.

Do you have any indication that you might have celiac disease (chronic diarrhea or constipation, abdominal pain and bloating, gas, unexplained weight loss or weight gain)? Have you ever been on a very low carb diet and noticed that you felt better? If so, perhaps you should ask your doctor to test you for celiac disease. If your tests are negative, you may still be gluten intolerant. The only test for gluten intolerance is to try the gluten free diet and see if you feel better. But if you want to be tested for celiac disease, don't go gluten free until after all testing is done.

I've read postings from a number of people with lupus, RA, fibromyalgia, and all sorts of other AI diseases and associated conditions, who swear that the gluten free diet saved their lives and restored their health, and that all of their illnesses have gone into remission. I have been on it for less than a year, and have seen improvement in certain areas but not in others (not yet anyway). I've been told it can take two years or more to feel better when there's a lot of damage.

My family has SO many AI diseases; most of my (adult) kids are now gluten free because they are trying to keep their own AI diseases from getting worse and they have put their own kids on the gluten free diet to try to prevent any autoimmune disease from developing in them!

A good place to ask questions about celiac and lupus connections is www.celiac.com/gluten-free/, which is a bulletin board site about celiac disease and the gluten free diet. They have multiple forums just like HealingWell does, but they're all about different aspects of celiac and the gf diet. The best place for newbies to start is usually "pre-diagnosis, testing and symptoms", although you might want to look at "related disorders & research" too. There's also a search feature so you can type in "lupus" and see how many threads show up. The celiac forum here on HW is not very active.

I am newly dx with SLE and I've been having a bad flare myself. I haven't been able to go to work for more than a week, so I do know what you're going through! Plus we have two adopted children ages 3 and 4....it is hard to be sick when you have little ones!

I don't know if I helped you at all but I'll definitely keep you in my prayers!
((hugs))
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 11/4/2009 9:29 AM (GMT -7)   
((((( Mypearl )))))) just wanted you to know you and your daughter are in my thoughts and prayers. Please let us know! Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


EKKIE
New Member


Date Joined Nov 2009
Total Posts : 6
   Posted 11/5/2009 3:38 PM (GMT -7)   

i will keep her in my prayers, i know how you feel i have two daughters and one is experiencing similar problems to my lupus. i was diagnosed at my 20's and she is 21. I pray this illness doesn't pass on to either of them. I dont think i would be able to handle that.

 

 


mypearl
Regular Member


Date Joined Aug 2005
Total Posts : 215
   Posted 11/5/2009 7:28 PM (GMT -7)   
thank you everyone for keeping
her in your prayers.
Lupus (SLE), Sjogrens, fibromyalgia, T4/T5 & L fractures, hyperthyroid, pernisious anemia, Interstitial lung disease in remission, vasculitis, neuritis, osteoporosis, gerd, APS, thyroiditis, complex thyroid nodules, asthma,  4 valve regurg., hemolytic anemia, prob ms,

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