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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Coping With My Cancer
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11 posts in this topic

Hi all,

I had my 2nd surgery on the 14th of Nov. All went really good.

They removed the surface lymph nodes in the left groin area. My Oncologist said they take the surface ones as a mass (I pictured an ice cream scoop lol). Then they take the front hip muscle, she said it's the one you use when you cross your leg, slice it vertically, then fold the half so it's now horizontal and it lays where the mass was and reattached. And yup, staples again, around 5-6 inches of them. I'm beginning to hate staples.

They kept me overnight this time and it's a good thing too cuz I couldn't move my leg an inch and had a catheter and a surgical drain.

As of this morning I'm feeling pretty good. I still have the drain, it's just plain uck, but working well. I can get from bed to the kitchen. I'm using my cane and the wall and I can now get my foot about an inch off the floor to walk, with drain safety pinned to my pajamas. I've made about 15 round trips so far. Today I am going to attempt my first shower since coming home and I'm pretty excited about that.

Hubs is feeding me well. Fried Chicken and mashed taters last night, serious yums. My appetite is doing really good and I'm eating and having snacks.

I have my follow up appointment on the 30th and will find out if these other nodes have any cancer. Keep your fingers crossed. Still starting interferon in Dec. My mom's coming to stay a few weeks when I start that. She lives in Hawaii, yes I'm jealous, and it's been over a year since I've seen her so I'm super excited about that.

That's it for now. Wish me luck on my shower. Remember that you are all warriors and keep up the fight for great health.

Colleen

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So sorry you are having to go through so much. Can't believe how quickly they send people home after a surgery like yours! Your dinner last night sounds yummy and you are so lucky to have a loving DH to help you heal and cook you good for sure safe food.. I hope you will heal quickly and will keep you in my thoughts and prayers.

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Wishing you luck for that shower, its gonna feel sooo good. Glad surgery went well for you. I had a drain once, sympathy. Uck is the word.

All the best for healthy healing and good follow up.

Mw

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Being able to get around so soon after the surgery is great! Even if it isn't dancing with the stars style getting around :)

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I'm glad your surgery went so well. :) I hope your recovery continues to go smoothly. Best wishes!

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So glad to hear your surgery went well and you are up and around already. Many positive thoughts being sent your way. Take good care:)

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That is quite the surgery! So sorry you have to go through this. Your good attitude and outlook will go a long way toward your healing. You must be looking forward to the reunion with your Mom. I'm glad you've got a great support system. Keep us posted, please.

I will be praying for you. :)

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Hi all,

Thanks for your thoughts, prayers and wishes. I sure do appreciate anyone who who can makes sense of my ramblings.

I've officially moved base camp to my living room chair, yay. Had a stumble in the shower this morning and knocked all the shampoo bottles over but no harm done. My drainage is getting better, from around 10 oz. In a 24 hour period to about 4-5 oz. Major progress. Pain is very manageable now, just a muscle relaxer every now and then. The best part is that I have REAL clothing on today, woohoo.

Otherwise, I've just been doing a ton of research on cancer therapies and clinical trials. Chemo is not effective with melanoma so choices are somewhat numbered and and have low rates of slowing down tumors. The organs of concern are the liver, lungs and brain, and spinal tumors. At this point it still looks like Interferon is next unless scans show distant mets. Then the choices are more difficult and complicated.

I heard somewhere that Thanksgiving is this week, I really need to be more informed on current events, lol.

Thankful to be alive, Colleen

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(hugs)

Suzanne Somers has a couple of good books out on health and one on treating cancer is very well researched. I think it's called Knockout or Breakthrough. It had some good ideas that made sense. It could be worth looking at.

Take care.

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Congrats Colleen on the big living room move. And Happy Thanksgiving too! :)

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    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
    • Could this possibly be related to celiac or a gluten intolerance?
      If you did actually have celiac disease, it can take weeks, months and years to recover from some of your symptoms, especially neurological ones.   Best to get screened for celiac disease.  It's a simple blood test.  Any medical doctor can do it.  But a GI doctor is needed for a diagnosis, since an endoscopy is part of the diagnostic procedure.  BUT you have to be consuming gluten to get accurate results! http://www.cureceliacdisease.org/screening/ http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ Keep on researching.  I wish you well!    
    • Confused
      Your doctor is woefully mis-informed.  First of all you did get a positive on both (barely on the TTG IGA).  That does not mean you should be referred to a dietician.  You should be referred to a GI to run either the full celiac blood panel (your GP can not order it at Kaiser) and schedule you for an endoscopy to obtain four to six biopsies to confirm celiac disease which is the GOLD standard level of care. Read the research here: http://www.cureceliacdisease.org/screening/ Ask your doctor for a GI referral.  Show them the print out out from the University of Chicago.  Be nice, but they'll do it.   Also, did your GP run a IGA deficiency test?  Do you have those results?   Best to email your doctor.  Reqest a GI referral.  Once it is in writing, your doctor has to act.  Let him know that what is required for a proper diagnosis per leading celiac research centers and the American GI Association. http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ DO NOT GO GLUTEN FREE UNTIL ALL TESTING IS DONE!  This is so critical.  Otherwise the tests will be invalid.  Then you'll be in diagnostic limboland!   After your GI consult, you can ask to be tested for vitamin and mineral levels.  Spend time learning about celiac disease and the gluten diet.  Learn about cross contamination and hidden sources of gluten. Again, DO NOT GO GLUTEN FREE YET!  You can do anything you like, of course, but get the facts first!     
    • Could this possibly be related to celiac or a gluten intolerance?
      I too have more neuro than gastro symptoms...its so weird. I hope we both find answers soon!
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