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lauriel234
New Member


Date Joined Apr 2009
Total Posts : 3
   Posted 4/3/2009 12:39 PM (GMT -7)   
My daughter, 20, has celiac disease, has been sick for almost a year now. Her symptoms started with being short of breath and weight gain (now approx. 65 lbs.). She obviously has to watch what she eats & can't cheat on her diet. Was on the pill, found she had very low progesterone. Took her off the pill & prescribed 100 mg. progesterone. She got her period 3 months with this, but had to stop taking it cause she suffers from depression & this was causing additional depression problems. Now off progesterone & not getting period. Other symptoms: hand tremor, insomnia, chest pain (has had ekg's, which are fine) & shortness of breath (can just be sitting & these occur), hot flashes, always tired - even after sleeping, vitamin deficiencies of D, B 12, zinc, selenium (so now taking these daily). Also taking probiotics & digestive enzymes. She has had body/joint pain in the past, but it has gotten much worse lately. Has had many blood tests - thyroid - ok; sed rate (i think it was 23) just had another one last night; lyme disease. Made appt. for a rheumatologist, but not until the end of April.
 

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 4/3/2009 1:16 PM (GMT -7)   
Hi, Lauriel, and welcome!  I'm not sure what is going on but I'm not a doctor, either.  It is so difficult when your children are ill.
 
Check out the Fibro 101 thread...the second thread on the forum.  You will find links to information about fibromyalgia, including symptoms of fibro.  There is another link called What Else Could It Be?  The symptoms of fibro are very much like several other illnesses.
 
It could be Chronic Fatigue Syndrome, also.  Here is a Mayo Clinic site that tells about the symptoms.  See what you think.
 
 
You are doing the right thing in getting her in to see a rheumatologist.  They most likely will run a battery of tests to rule out certain illnesses that have the same symptoms.  Many with fibro also have chronic fatigue syndrome and many of the symptoms do fit.
 
If I were  you, I'd contact the rheumatologist's office and ask if you can get in earlier if they have a cancellation.  It's worth a try!
 
Please let us know what you find out.  We really do care.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


lauriel234
New Member


Date Joined Apr 2009
Total Posts : 3
   Posted 4/3/2009 7:10 PM (GMT -7)   
Sherrine - thanks for the info. At least here maybe someone will listen. My family thinks nothing is wrong & that it's 'all in my daughter's head'. They think I should give up looking for an answer after a year.

AustenFan
Veteran Member


Date Joined Aug 2008
Total Posts : 1771
   Posted 4/4/2009 3:38 AM (GMT -7)   
Hi Lauriel and welcome.  I'm sorry your daughter is going through this; I think it is harder on us when our kids are sick than when we are.
 
I very much disagree with those who say you should give up looking for an answer after a year.  I have a couple of illnesses that are difficult to diagnose, I had to be very persistent, patient, and go through multiple doctors to finally find help.
 
Do you live near a large research hospital?  I live about 2 hours away from one and have found the doctors there to be so much more helpful and tolerant of "unusual" symptoms or groups of symptoms. They've seen so much and are less likely to dismiss things as "all in your head." Plus, they work together to try to come up with an answer.
 
I agree with Sherrine; it does sound like it could be CFS.  It could also be lots of other things including gynocological.  Has she been tested for PCOS?  It's also possible that she could have more than one problem/illness going on.  Just the fact that her periods are so irregular seem to indicate that something is wrong.  You can't just wish/imagine those away (if you could, I would have tried that long ago :-) ).
 
Your daughter is lucky to have you in her corner.  I hope you find answers at the Rhematologist.  Keep us posted.
 
Hugs - Austen
 
 
"There is no charm equal to tenderness of  heart." - Jane Austen
 
 
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.
 
 
 
 
 
 


pattipanda
Veteran Member


Date Joined Jan 2009
Total Posts : 1014
   Posted 4/4/2009 4:57 AM (GMT -7)   

Hi L,

Wow it sounds like you and your daughter are really going through a hard time.  I'm sorry the rest of the family doesn't understand.  I'm so glad you're taking your daughter's problems seriously. 

I don't really have any answers for you, it could be so many different things.  I too am glad a rheumy is going to be taking a look at her.  I just wanted to welcome you to the forum and ask you to continue to let us know how both of you are doing. And to tell you you're a good mom and doing all of the right things.

No matter what her diagnosis is.. please let us know.  We're here for you .. whether its just to vent or ask questions.

Take care,


Patti
 
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel, Psoriasis. 
Meds = Elavil, Tramadol, Xanax, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown


rache1020
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 4/4/2009 7:15 AM (GMT -7)   
Hello Lauriel,

I'm sorry for all your daughter's troubles. I've had a few similar problems with progesterone. I think I am pretty much hormone intolerant. I don't take any birth control because all of it (and trust me, I have tried lots of different kinds) exacerbated my fibro or else I'd put on weight.

I had some weight gain problems with progesterone, and they also suspected thyroid. Test was normal. I had gained 25 pounds in six weeks. It took me a year to get it off. Then when I went off the progesterone, my period went awry for almost a year. I was getting a period every two weeks, then not getting one for over a month, and so on. I ended up with a misdiagnosis of polycystic ovary syndrome. Now, my period is perfectly normal again. The progesterone just made my body extremely volatile.

If I am not mistaken, a sed rate of over 20 is abnormal. It means there is inflammation somewhere. But I can't make that call. Make sure you keep that rheumy appointment, and be ready with a list of symptoms and questions to ask. I finally got my diagnosis after 2 years from a rheumatologist. And it does suck that they take so long to get in to see -- I had to wait for almost two months during a major flare for my first appointment.

Good luck, and I commend you for standing behind your daughter in this. I am sure your support helps her more than you know. All too often we feel like or are told we are crazy.

SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 4/4/2009 8:00 AM (GMT -7)   
Hi Laurel,

You've gotten some great advice and I don't really have anything to ad, but I did want to welcome you and let you know I'll be thinking about you and your daughter and hoping she's able to get some answers soon!
love and hugs
~danielle


fibromyalgia, ibs, gerd, anxiety

We either make ourselves happy or miserable. The amount of work is the same.~Carlos Castaneda

I wish you all the joy that you can wish.~William Shakespeare

Housework, if you do it right, will kill you.~Erma Bombeck


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 4/4/2009 9:15 AM (GMT -7)   

Lauriel, don't ever give up!  When my daughter was around 25 she started having  vomiting issues.  She would be fine and then, all of a sudden, have to vomit.  She was losing weight and was 97 pounds at 5'6" tall!  The bones were sticking out in her arms, she was so emaciated.

She went to her doctor, many times, who didn't think anything was wrong since nothing showed on tests.  I sent her to a gastroenterologist, she went through all the GI testing, and that idiot told her it was in her head!  She came home in tears not knowing where else to go.  I think they thought she was bulimic.  I knew she wasn't because I checked!  smilewinkgrin

I told her that we tried all doctors except the gynocologist.  She went and it was endometriosis that was causing the problem!  Who would have thought that?!!!  She had outpatient surgery, was put on birth control pills and is fine now and has put on about 20 pounds.  She looks wonderful.

So, don't give up.  Someone out there has some answers.  Make sure the rheumatologist you are seeing believes in fibromyalgia, too.  Many still don't and she could have that too.  But, the rheumy is probably your best bet.  I'll be praying he/she is a good one.  If you don't get the answer there, see another one.  This isn't in her head.

Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Baloo
Regular Member


Date Joined Feb 2009
Total Posts : 210
   Posted 4/5/2009 1:16 PM (GMT -7)   
My heart goes out to you. I am walking thru similar issues with my daughter, and we are still trying to find out what is going on. Keep looking, I will be thinking about you and your daughter and keep you in my prayers
Fibromyalgia, Hashimoto Thyroid disease, Chronic pain.
 
 All things are possible thru Christ Jesus who strengthens me


pattipanda
Veteran Member


Date Joined Jan 2009
Total Posts : 1014
   Posted 4/5/2009 1:23 PM (GMT -7)   

Sherrine,

I don't know if you'll be checking back on this thread.. but after reading what you said about your daughter and her problems, I wanted to add that YOU A VERY GOOD MOM, TOO.  Wow, who would have thought that!!  I'm glad you we so diligent (sp?)!!!  I guess your daughter can relate to being told "its all in your head" huh?!

Hugs,


Patti
 
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel, Psoriasis. 
Meds = Elavil, Tramadol, Xanax, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 4/5/2009 2:25 PM (GMT -7)   

Thanks, Patti!  But, you would do the same thing...any parent would that loves their child.  That's what Lauriel is doing and will find the answer.

Never give up if you don't get answers.  Doctors aren't perfect.  A few years ago I was hospitalized five times in a six week period.  As soon as I got home I got sick again with partial bowel obstructions.  I saw many, many specialists and went through many, many tests and no one could understand what was going on.  Know who finally figured it out?  ME!  I was taking blood pressure meds and diuretics for my blood pressure.  I lost a lot of weight, my blood pressure went down...too far down...and my system wasn't operating properly because of the extremely low blood pressure...62/30!  When I was in the hospital they never gave me diuretics and BP meds because my blood pressure was fine.  But, when I was sent home I was told to start all meds again.  I would be sick within 24-36 hours later.  Once I realized what was going on, I stopped the meds and called my Internist and told him what I had done.  He saw me and my blood pressure was perfect and has been ever since.  So, doctors don't always have the answers.  Never give up until you know what is going on!

Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


lauriel234
New Member


Date Joined Apr 2009
Total Posts : 3
   Posted 4/7/2009 11:14 AM (GMT -7)   
just wanted to thank everyone who posted a reply to my previous topic. my daughter has an appt. at a hospital in ny next week which deals with celiac disease. hoping that they might be able to come up with something. i'm bringing all the blood test results from the past year, maybe they can get something from them (will definitely take a couple of weeks for them to sort thru them). hope everyone has a nice holiday.

leemadd
Veteran Member


Date Joined Sep 2008
Total Posts : 532
   Posted 4/7/2009 1:16 PM (GMT -7)   
Im not really sure what to say other than I hpoe you find out what is going on and we will help if we can.
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