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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Okay I have Celiac disease and I think there is a great likleyhood my mother does as well. To be honest listing all the things that have gone wrong with her health since I've been alive (39 years) is like writing a poster for Celiac symptoms and complication. Most recently she went in to have cataract surgery in November and either during or immediately after surgery (unknown or at least unacknowledged at the time) she had a mild stroke. We found out about the stroke after she went to her new DO in March for weakness. She is finding it difficult to stand/walk and is often very dizzy. The DO first noticed she had a small mass in her right breast which became her immediate focus. It was a very tiny cancer and the Dr's alternated between saying it was malignant and benign but either way they insisted it must come out immediately. They also assured her this had nothing to do with the weakness. They did a lumpectomy and sent her in for an MRI of the brain to make sure the weakness wasn't brain cancer. MRI came back showing she had had a stroke a few months earlier. Now before we could do anything else including physical therapy and X-ray therapy for the affected breast she developed shingles! She was finally allowed after another two weeks to begin X-ray therapy. The oncologists are panicd because she has been getting the lowest doses possible and she is getting weaker and Mom is telling them she wont survive the treatments. The Oncologist suggested she could have an unusual case of a rare autoimmune disease called Myastenia Gravis. It usually shows itself through weakness in the eyes and her eyes look fine. So Monday the oncologist insisted her DO has to get her in to a Neurologist now! He also sent her for another MRI. We went to her DO yesterday and after a bit of poo pooing the oncologists panic the results arrived at the DO's office. There is new damage to my mom's brain. It is not a stroke but they don't have any idea what it is! The DO ordered full bloodwork (including a celiac panel at my insistence) and told us to come back in 2 weeks and by then she will have found mom a neurologist. Now when Mom went for her X-ray therapy the nurse at the oncologist said that would never do and she now has another appointment to talk to the Oncologist today.

 

All this to ask two things 1) The DO said that the results of the Celiac panel could come back false positive because mom is immune compromised by the X-ray therapy. Is that true?

2) Anyone have any thoughts on my mom's situation? Mom is getting very tired of not knowing what is wrong and she used to a sitter, she sat with mostly dementia patients, she's getting rather scared and so am I. Right now she is mentally on the ball it is physically she is falling apart but with it being brain damage.....she also going crazy not being able to do anything. Her arms and more so her legs are so weak she can't hardly get to the bathroom and it's only a couple feet away.  

 

They should get the blood work back today but I don't know if they will call us with the results or not.

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I know you're scared, and I'm sorry your family is going through this.

Considering what may be at stake, will your mother try gluten-free now? There's no reason not to. As we all know, it can't hurt...but may help tremendously.

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Unfortunately I don't have answers to your questions, but I hope they figure out what's wrong soon. It sounds like you're being a great advocate for her healthcare. My mother has had leukemia for almost 20 years and has been through three rounds of treatment that left her weak for several years each time, in addition to having strange unexplained neurological and muscular problems (like only being able to walk backwards) that left her in a wheelchair for a while. I know how scary it is when even the doctors have no idea what's going on. 

 

Given the urgency of the situation, and your own celiac diagnosis, it seems like it would make sense to try having her go gluten-free immediately, without even waiting for further test results. It may be totally unrelated, and I know it's not generally advisable to go gluten-free before all testing is complete, but it sounds like you don't have any time to lose. If there's even a tiny possibility that gluten might be causing or exacerbating her problems, it surely can't hurt to try. I imagine your mother must be willing to try just about anything right now, so hopefully she'd go along with the suggestion.

 

...The reply above was just added as I was writing this - so I second pricklypear's suggestion!

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She is willing to try it even after her DO told us both that "Going gluten-free when you don't have Celiac Disease can cause serious health issues." :blink: I have no idea what she was talking about but I tried not to roll my eyes. Now I just need to tear apart the kitchen and go through all her meds and lotions etc. She has a lot of prescriptions. If there any data base to check for gluten in prescription drugs?  

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She is willing to try it even after her DO told us both that "Going gluten-free when you don't have Celiac Disease can cause serious health issues." :blink: I have no idea what she was talking about but I tried not to roll my eyes. Now I just need to tear apart the kitchen and go through all her meds and lotions etc. She has a lot of prescriptions. If there any data base to check for gluten in prescription drugs?

Yes. http://www.glutenfreedrugs.com/

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thank you :D

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thank you :D

Whatever you need, just ask. You're going through a tremendous amount of stress right now.

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sending you positive thoughts!!!  glad that you pushed for the celiac panel for your Mom :)  I know you have the next appointment scheduled, but is there any way you can get the results earlier since you all need some answers?  I hope so!

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