KD,

Please ask the doctor about also testing your daughter for Gluten Sensitivity/ Celiac Disease. (Check out Diagnostic Testing in The Gluten File first.) Many doctors don't think to look for it in patients without obvious GI distress, although as many as half of those with Celiac Disease don't have any GI symptoms at all. It is associated with autoimmune thyroid disease, including Graves Disease.

http://thyroid.about.com/cs/latestresearch/a/celiac.htm
http://www.elaine-moore.com/gravesdi...autoimmune.htm


It is linked to many other autoimmune diseases, which are sometimes responsive as well to a gluten free diet. I'm not sure what your daughter's liver involvement is, but do check out the "Other Autoimmune Disease" link... and look at the entries for liver, lupus, rheumatoid arthritis, etc. A few different liver diseases are associated with celiac disease, as well as elevated liver enzymes.

http://jccglutenfree.googlepages.com...oimmunedisease
http://jccglutenfree.googlepages.com...thyroiddisease
http://jccglutenfree.googlepages.com...thyroiddisease

Also, take a moment to scan the right bar of The Gluten File. There is more on gluten and skin involvement, etc.

Current research is looking at whether leaky gut syndrome and adverse immune system response to dietary proteins may be a cause of OTHER autoimmune diseases as well. I just don't want to overwhelm with too much data, but some of the abstracts and studies can be found in the links above.


Here are two of the better review articles about Celiac Disease, but the tricky thing about Celiac Disease is that it mimics many other diseases (including lupus, ALS, MS, CFS, fibromyalgia, and the list goes on). It is a systemic autoimmune disease with wide ranging symptoms. The other tricky thing is you can have gluten sensitivity causing these problems without testing positive for full blown celiac disease, and this is something that is just beginning to be understood and accepted by mainstream medicine.

Detecting Celiac Disease in Your Patients by Harold T. Pruessner, MD

Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think by David A. Nelson, JR, MD, MS (AAFP)


Celiac Disease or gluten sensitivity is a GOOD diagnosis to get... a hopeful one... because the cause is known, a treatment exists, and often there is improvement in many other symptoms, and occasionally remission of other autoimmune disease. It is worth testing for.

I hope that you will find answers for your family~

Cara

And I thank you all so very, very much for the thoughts and prayers, as well as the love and support. I feel like a different person!!!!!!!!!! Surely 2008 will be a MUCH different year for us! I can't wait to have my daughter back and watch her flourish and continue to grow!

The tests for both Lupus and Rheumatoid Arthritis were NEGATIVE with a capital "N".

Further, her liver counts are way down though still a little high. He expects them to be right back to normal soon.

Her F4 & F3 were in the high normal range...all of those that quickly! It's obvious to him that she has illness induced liver disease. The good thing is, we get the illness under control and she should be just fine.

Now, speaking to getting the illness (grave's) under control...with her counts being normal, we have to do surgery ASAP (maintenance is no longer an option for her because she can't take meds). He said he usually refers out to three different surgeons, all at different hospitals and lets the patients choose. We don't have that luxury because we have to take whoever will see her the quickest. We have a small window of opportunity here because the SSKI only works for short periods of time).

We preferred one because he's seen both of my daughters before and he actually saved the life of my oldest when she hemmoraged (sp?). He actually called to check on her from home and had her sent back out to the hospital so he cares. The endo called him first and she sees him Monday at 1:15 and he'll get the ball rolling to schedule the surgery...probably late next week or early the following week...just as quickly as the appropriate tests can be done.

HOW HAPPY AM I?????? WE'RE IN THE LAST LEG OF THIS HORRIBLE JOURNEY!!!!! EVERY SINGLE TEST ON THYROID, OTHER AUTO-IMMUNE DISEASES AND LIVER WERE IN NORMAL RANGE IN JUST ONE WEEK (except for one liver count that should be 60 or a bit under and it was only 64 when it was WAY high) of using this SSKI!!!!

Now, here's where it gets tricky and I'm going to ask for more prayer and thoughts. Please pray that my oldest has the baby this weekend, Monday or Tues. Anything after that and I risk not being there for one of my daughters during once-in-a-lifetime occurrences.

She said she's feeling pretty "weird" today, so I'm praying HARD that she goes this weekend.

THANK YOU ALL SO MUCH. I LOVE YOU.

Kimmy-Dawn

Sending lots of Prayers for your other daughter to go into labor now. SO that she can have her little bundle of joy the weekend. And you can play Grandma for Monday and Tuesday.

And then I'm so relieved to read all the good things for your other daughter.

I only really see good things. I see that a good surgeon, got her right in too.

That to me means that she is one loved little girl by god and all those of us on earth. I'm so happy you are getting this kind of help.

I'm going to be praying for you all.

Donna

Thank heavens.

You do want to ask
1) how many of these surgeries have been done by the doctor.
2) how experienced he is in preserving the parathyroids. (these can be damaged or removed by accident)

You need to ask, because then he WILL be more careful! JMO

Still rooting for you and your daughter!

Thank you guys so much!

MrsD,

We spoke with the endo about that and this is the top surgeon he refers to. he also spoke about the parathyroid glands and that they'll be watching her closely for the first 24 hours for that...but that was the endo saying all of that.

We have alot of questions Monday for the ENT and both of those are in them. He is a trusted dr. in our area and has a wonderful reputation. He actually saved my oldest's life with his vigilence.

However, that was with tonsilectomy's and stuff. You're right in that this is a horse of a different color, so asking these types of questions are important.

I know that our endo is the top in the tri-state area and this ENT is his first pick. That tells me alot, but we want to be as prepared as we can be AND confident in him so asking specifically about how many he's done, what he plans to do (all or leaving a piece), concerns for the parathyroid glands due to the size of the goiter, concerns for vocal chords, etc...all important questions.

He endo wants to test her blood every Tues until further notice and we'll take it from there.

We walked in today and he said, "Well, Jessica, you just get more interesting to me and this all just gets more complicated." Jess laughed and said, "No offense, but I don't care to be interesting to you..." LOLOL.

I just have no words to describe the relief I feel about the test results, but to know this is all be over soon (for the most part and at least the dangerous), makes me so happy I can't see straight.

Thank you so much and I'll update with what the ENT says.

Love

KD

Edited to say that he included renal function panel and all was perfect there except the glucose. It was 103 with a reference range of 70-100. However, that's with fasting and they didn't have her fast, so I'd say it's good. Also in her renal function panel her phosphorus was slightly high with a 4.7 (reference range of 2.5-4.5).

The only other thing that was elevated was on the hepatic panel, while everything was within normal range or negative, her ALT (SGPT) was 65 (reference rage of 0-60). He wasn't concerned about that at all and said it had come down very well and would continue to.

Kim,

Thank you for the update on your girls. I hope you do become grandma before your other daughter has her surgery. It is pretty hard to be at two places at the same time. Our prayers are with youand your family. Make sure you take care of yourself.

for your girls.

Darlene

You know my MIL has had this most of her life. Never knew she even had it,
until she turned yellow after some Chemo for breast cancer.

She is in her nineties now.

I am glad to see jcc come on here, and explain the gluten connection.
I really think it should be explored, since autoimmune issues often have triggers like food. (there is a trigger now known for juvenile diabetes--cow's milk antigen which is fragments of bovine insulin that activate diabetes in kids with
the genetic tendency.)

So with time--I'd get that celiac testing done. If positive, it would help with baby too, who may inherit it as well. Not expensive or invasive typically. (unless you do the endoscope)

Best wishes for the surgery. Looks like you have those bases covered well.
I'll be rooting from here.

Oh KD!!! So sorry I am seeing this late... Please know that I am praying for your DD's and for you too. You certainly have had alot on your plate and as a Mom, myself~~ I know that when your children are hurting, you are too.

take care of yourself too.

Mrs d
I wanted to say I always enjoy reading your information. I have really been dealing with things myself. And its always helpful when someone puts good information in to help.

So I know kimmydawn really appreciates it too.

So thanks from many of us, for all you do.

Donna

Oh, yes, I appreciate EVERYONE with their help, thoughts and prayers in whatever forms they can give! I appreciate it so much!

More prayers have been answered...my oldest is in the beginning stages of labor and I fully expect her to be going to the hospital sometime in the wee morning hours...it's just getting organized now!

I'm taking the camera and I will let y'all know! I can't wait to meet my little Ethan James! I'm so happy I can be there for her and then for daughter during surgery! What an answer to prayers!

Much love and thanks!

KD