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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This 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 email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity

    Jen Z

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    About Jen Z

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    • Birthday November 09

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    • Gender Female
    • Location Charlotte, NC

    Jen Z's Activity

    1. Jen Z added a post in a topic Raynaud's Syndrome   

      Many years ago when first diagnosed with Raynaud's as a teen, I took meds when I was really symptomatic (Isoptin (Verapamil). For me, the side effects were worse because they caused such a rapid heart rate and flushing. I do have MVP and palpitations so the meds just exacerbated that.
      This year, I have been having a really tough time with my feet at night. I bought an electric throw size blanket and cocoon wrap it around my legs and feet when I get in bed at night. I am finally able to sleep again and shed my wool socks and long john bottoms at some point during the night. No more mittens either. The flannel sheets and electric blanket have really made a huge difference.
      Interestingly, I have discovered that I have Sjogrens as well. Drs never mentioned it even though I have been treated for dry eye and map-dot-fingerprint dystrophy for 20 yrs. I did swallow tests a few years ago because I so often choke on food or just plain air. Interesting that a diagnosis of celiac disease led me to connect the dots on my other symptoms. Thank goodness for the internet.
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    2. Jen Z added a topic in Celiac Disease - Related Disorders & Research   

      Raynaud's Issues Or Neuropathy Issues?
      I was diagnosed with Raynaud's as a teenager and recently diagnosed as a celiac in middle age. Now I also see that I am textbook for sjogren's.

      I am trying to determine what neuropathy actually feels like. I have had a numbness/tingling issue in my left hip/pelvis that travels down to my foot when it is really acting up badly. It also occurs in my left arm when i am in a quiet, no fidgeting allowed sitting position. GP wants me to do a mri for lower back issues but I am holding off for a bit until I can fit more puzzle pieces together. When I do a mri, I want it done completely. I'm not spending the money to go back in. Get it right the first time is my motto. I also have tingly sensations on the back of my neck that make me think bugs are crawling on me.

      SO on to the issue of my nighttime problems. I thought this was all raynaud's related but maybe it's not. My feet are always phenomenally cold at bedtime in the winter. I preheat my bedroom with an electric heater. I wear long johns under my night shirt and have upgraded from regular weight socks to wool boot socks- I am a sight to behold! Oh and now I am even wearing mittens to bed. Once I lay down, I get even colder. My body gets rigid as I curl up to stay warm. In the morning my muscles hurt from being so cramped up. I have trouble with the leg tingling so much at night that it's really difficult/painful to sleep on my left side. I have bad acid reflux so left side sleeping is preferred by me to keep the acid in my stomach. Between the coldness and the tingling, I am not sleeping well. Today I plan to buy an electric blanket. I moved form the NE US to the SE. It's not really all that cold here in NC.

      Can you all give me your 'expert,' I live with this kind of thing, opinions? I love the information I get from this forum by reading past threads. By hearing real life experiences, I realized that my swallowing issues were sjogrens and not caused by reflux. Apparently I didn't use the proper 'terms' to describe my problems so that my physicians- GP, rheummy, eye, and dentist would know what I was referring to. Geesh, what's a girl to do?
      • 16 replies
    3. Jen Z added a post in a topic Health briefs: A caution on celiac disease - Newsday (subscription)   

      Thanks! Interesting list since I have several eye shadows that the rep told me had gluten that are not on this list. Of course, they are my favorite formulations :/
      I have set them aside to try at a later time when I feel healed and open to some experimentation. For now, I want everything clean.
      <Sigh> This is certainly going to take a while to investigate. Are their 'hidden names' for gluten when it comes to cosmetics?
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    4. Jen Z added a post in a topic Health briefs: A caution on celiac disease - Newsday (subscription)   

      That article was useless- no decent information. LOL I have been struggling with this cosmetic issue since diagnosis 3 weeks ago. I've been having to call the manufactures directly and go through all the different formulations. I have a large collection of high end cosmetics. Weeding out my colors has been nearly as traumatic as the food issues <grin>. There is no easy way to do this as manufactueres don't have lists of gluten-free items- at least not the brands I use- Mac, Lancome, Urban Decay, Clinique, Estee Lauder. Too much money invested to dump it all and start fresh.
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    5. Jen Z added a post in a topic Got Careless - Paying The Price   

      I've just completed week 3 of gluten-free living. I often wonder when reading labels how much I should be concerned when there are statements that state made in a facility that produces wheat products. For now I avoid them like the plague. What about others?
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    6. Jen Z added a post in a topic Reaction To Rice?   

      No- I a sure of nothing these days. LOL However, the butter is clean.
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    7. Jen Z added a post in a topic Nick N Jims Barbeque   

      Oh, there is one in Charlotte, NC. I can give them a try too!
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    8. Jen Z added a post in a topic Reaction To Rice?   

      Interesting. I have noticed that when I eat a bowl of plain white rice with non cc'd butter and sea salt, I end up with a mild stomach ache within an hour. Nothing more but enough that I am suspicious. Scary to have a rice issue since it seems to be the basis of all non gluten-free snacky like foods.
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    9. Jen Z added a post in a topic New Celiac 1; Non gluten-free Savvy Dietician 0   

      Thanks everyone for the advice on TJ foods. I am finding that just about anything in the prepared meals doesn't work for me. I was using them as well as other vegetarian meals over the summer before diagnosis and not able to eat most of them due to the high spice content. I can not have anything with chili pepper at all or my reflux flares horribly. Chili pepper is in almost as many foods as gluten it seems some days

      It really comes down to having to cook for myself. To quote my dear friend Eeyore- 'oh bother.'

      Today I will cook with my beautiful new gluten-free pasta made with rice flour. If that doesn't cut it, I'll move on to the quinoa flour pasta. I have plan B ready
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    10. Jen Z added a post in a topic Worried About Calories, Refractory Sprue, And Basically Everything   

      I can't comment to the food issues as I am newly diagnosed and learning. Just curious as to whether or not you are taking an acid reducer.My reflux would be out of control without omeprazole which I take daily- every single day for life without fail. Uncontrolled reflux will damage your esophagus and leave you more susceptible to barrett's esophagus- a pre-cancerous condition.
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    11. Jen Z added a topic in Celiac Disease - Coping With   

      New Celiac 1; Non gluten-free Savvy Dietician 0
      Would have been nice if my doctor sent me to a dietician that had a background in celiac disease. Not sure how this happened but I think that on day 4 as a celiac, I may be more informed as to appropriate food options than he was as a clinician with years of experience in the dietary field. Cross contamination- no worries that's only for the super sensitive... and other such interesting statements. Thank goodness for the internet . I went to Trader Joe's this morning and bought a whole bag full of gluten-free foods. woohoo. Lunch sucked and is now in the trash.
      Hoping dinner goes better
      • 5 replies
    12. Jen Z added a post in a topic Is It Ok To Be On gluten-free Diet Before Biopsy In 3 Weeks?   

      I am really back and forth about doing further testing. I haven't been biopsied yet for the DH but I have had the most insanely itchy rash off and on for the past year that flares and disappears and then reappears in the exact same spot. Sometimes it gets little fluid filled spots that look like fire ant bites. Another doctor gave me 2 different meds for it and neither have made it go away completely. I can see the writing on the wall for this one.
      I am willing to suffer through another endo because I am worried about barretts esophagus due to my reflux problem. My husbands first wife died unexpectedly very quickly from stomach cancer so we are a little sensitive to cancer issues. We both need peace of mind. I would put this off until next year but I think it's best to just get it over with.
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    13. Jen Z added a post in a topic How Long Will Insanity Defense Coverage Apply If I Hurt The Next Bubbly Person That Reminds Me About How Lucky I Am Since It Could Be Worse?   

      I moderate on 2 health related groups for dogs so I know subject lines need to stand out to be seen Human doctors are not the only ones that don't listen to their clients- vets don't either so I along with others help the human learn how to care better for their pets specific illnesses. Luckily, I have a doctor that is great about following through on testing and so far I feel like I am getting good care. I am hesitant to go through my litany of aches and pains with him. After reading so many posts today, I see a lot of common ground with some of these odd symptoms I have been having and was just chalking up to the aging process. I plan to ask for bone density testing too since my mother was diagnosed with osteo at an early age.

      And yes, there IS a character limit! I had to reword a couple of times
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    14. Jen Z added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Is It Ok To Be On gluten-free Diet Before Biopsy In 3 Weeks?
      Confused based on what I am reading. Do I need to have gluten in my system for the biopsy? I did for the blood work which came back positive. I've been gluten-free for 3 days now and already feeling an improvement. My husband has a colonoscopy scheduled for this week and mine is in 3 weeks. I can switch out for his appt and load on gluten if need be but I can't go back on gluten for 3 weeks. My dr does the EGD and colonscopy so it's easy to switch appts. I am due for my 5 yr scope as a result of acid reflux so I'm getting a biopsy as additional confirmation of celiac and (lucky me) getting the colonoscopy to check for IBD.
      I really don't want to go through all of this. I am slow to recover after anesthesia and usually end up sick for a day or two as a result.
      • 5 replies
    15. Jen Z added a post in a topic New To Forum   

      Interesting that you mentioned vision issues, AVR1963- could you elaborate on that? I too have had what I call 'jumpy vision' for a while. Images seem to move around for me at times- often related to feeling tired or having a puffy face.
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