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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.

Anyone From Tennessee
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19 posts in this topic

I live north of Memphis. Just seeing if anyone is around this area or close by.

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I'm about 70 miles from Knoxville. I'm just south of Johnson City appx. 40 minutes.

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I live in Johnson City, TN. My physician just told me that my Celiac Panel was abnormal and that I had Celiac's Disease. Now, what do I do?.......Tom

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I live in Johnson City, TN. My physician just told me that my Celiac Panel was abnormal and that I had Celiac's Disease. Now, what do I do?.......Tom

Hi Tom. It sounds like you are a bit overwhelmed. I'm in Greeneville and you'd be suprised, for the area, how many options/products/stores are available. Just where I live I have access to two health food stores, two mennonite stores, and can find speciality products at Food City and Ingals. I also make trips up to JC to Earthfare. There also is another little health food store in the same shopping center as PetSmart (I don't know the actual shopping center name. I think it is off of State of Franklin.) I have also heard there are a lot of options at Kroger but I haven't been there. There was a speciality place in Kingsport that I went to a few times when I was commuting. I'll have to get back to you on the name of the place. I have sucessfully eaten at Mello Mushroom. I was really suprised at how good their gluten free pizza was.

Curious, did your doctor diagnose you based on your blood work only? Is your doctor recommending a scope? Some doctors will diagnose based on blood work alone. Rarely there is false positives, but a lot of false negatives. If you are going to have a scope/biopsy done however, stay eating a regular diet until it is over. Also it is recommended that all first degree relatives get screened for celiac (parents, siblings, children) because their risk increases from 1 in 133 to 1 in 22 having a first degree relative diagnosed.

I would start by eating things that are naturally gluten free like fresh meats, veggies and fruit. Dairy is fine unless you are having issues with it. Do you live alone or live with someone, ie roomates, wife, kids..? If you do are you going to maintain a shared house or take the whole house gluten free? Here is what I did when I was first diagosed:

-Went through the pantry/fridge and got rid of anything I couldn't eat and that the other "gluten eaters" didn't want and donated what I could to the local food bank. I dedicated a drawer in the fridge and the top shelf of the pantry for gluten foods the rest being for gluten free. I scrubbed the kitchen down and all but one small section of the counter was gluten free. I set up my husband's toaster on the small section for him and he could make his gluten sandwiches etc.

-I replaced or bought another of: toaster, wooden spoons/cutting boards, waffle iron, scratched/worn pots & plastic storage containers, pasta strainer. I kept some of the worn pots for hubby to use for gluten things.

-I rid the entire house of any regular flour. There was to much risk since it can stay airborn for awhile and then settle down on the counters. Any baking was done gluten free and if the gluten eaters wanted something I couldn't/wouldn't make, they went to the bakery.

-All shared meals were gluten free. I had no interest in cooking separate meals. The gluten eaters had their cereal and had luch at work/school. Any gluten products had to be consumed at the table on a plate and the kids/hubby had to wash afterwords so they wouldn't cross contaminate surfaces in the house.

-Let gluten eaters finish up any condiments etc that may have been contaminated and replace with new for everyone to share. They don't cross contaminate because I either bought squeeze bottles or they scoop out of the containers what they want and never double dip. We share things like cheese and lunchmeat. My husband will have clean hands and take out what he wants and put it away before touching his bread.

-replaced any baking items/spices/herbs that may have been contaminated with flour (yeah the double dipping thing, I was guilty before)

-checked all my personal care items and made sure they were gluten free. If you have a girlfriend and she is not gluten free, she will need at least gluten free lip balm and lipstick incase you kiss. Your partner, if not gluten free, will need to brush teeth before kissing too.

I know it seems overwhelming at first, mistakes will happen, but it does get easier. I wish when I had gone gluten free I had someone to help me set things up. It would have been so much easier. If you have any questions or if I can help you with anything you can PM me.

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Hey, Thanks for the reply. I was having concerns of low Testosterone (mine was 75 instead of in the normal range of 300), but I wasn't having low testosterone symptoms, plus I have been on Testosterone injections for the past 2 years, but they were not working at all. I requested to see an Endocrinologist. When I finally had my appointment (about 3 months) and after a thorough exam and blood work, my Endocrinologist called me yesterday to let me know that most of the blood work came back okay, but my Celiac Panel was abnormal. The Endocrinologist explained different symptoms, including low testosterone. After hearing and reading about Celiac Disease, I remember always having some issue areas but physicians couldn't explain. I had scopes done years ago looking for something because at some points I would have unexplained bleeding, but the scopes came back normal. My endocrinologist told me to be Gluten free for a couple of months and he will re-check my testosterone levels and blood work.

Thanks again for the information and encouragement! :)

The Adventure begins.........

Hi Tom. It sounds like you are a bit overwhelmed. I'm in Greeneville and you'd be suprised, for the area, how many options/products/stores are available. Just where I live I have access to two health food stores, two mennonite stores, and can find speciality products at Food City and Ingals. I also make trips up to JC to Earthfare. There also is another little health food store in the same shopping center as PetSmart (I don't know the actual shopping center name. I think it is off of State of Franklin.) I have also heard there are a lot of options at Kroger but I haven't been there. There was a speciality place in Kingsport that I went to a few times when I was commuting. I'll have to get back to you on the name of the place. I have sucessfully eaten at Mello Mushroom. I was really suprised at how good their gluten free pizza was.

Curious, did your doctor diagnose you based on your blood work only? Is your doctor recommending a scope? Some doctors will diagnose based on blood work alone. Rarely there is false positives, but a lot of false negatives. If you are going to have a scope/biopsy done however, stay eating a regular diet until it is over. Also it is recommended that all first degree relatives get screened for celiac (parents, siblings, children) because their risk increases from 1 in 133 to 1 in 22 having a first degree relative diagnosed.

I would start by eating things that are naturally gluten free like fresh meats, veggies and fruit. Dairy is fine unless you are having issues with it. Do you live alone or live with someone, ie roomates, wife, kids..? If you do are you going to maintain a shared house or take the whole house gluten free? Here is what I did when I was first diagosed:

-Went through the pantry/fridge and got rid of anything I couldn't eat and that the other "gluten eaters" didn't want and donated what I could to the local food bank. I dedicated a drawer in the fridge and the top shelf of the pantry for gluten foods the rest being for gluten free. I scrubbed the kitchen down and all but one small section of the counter was gluten free. I set up my husband's toaster on the small section for him and he could make his gluten sandwiches etc.

-I replaced or bought another of: toaster, wooden spoons/cutting boards, waffle iron, scratched/worn pots & plastic storage containers, pasta strainer. I kept some of the worn pots for hubby to use for gluten things.

-I rid the entire house of any regular flour. There was to much risk since it can stay airborn for awhile and then settle down on the counters. Any baking was done gluten free and if the gluten eaters wanted something I couldn't/wouldn't make, they went to the bakery.

-All shared meals were gluten free. I had no interest in cooking separate meals. The gluten eaters had their cereal and had luch at work/school. Any gluten products had to be consumed at the table on a plate and the kids/hubby had to wash afterwords so they wouldn't cross contaminate surfaces in the house.

-Let gluten eaters finish up any condiments etc that may have been contaminated and replace with new for everyone to share. They don't cross contaminate because I either bought squeeze bottles or they scoop out of the containers what they want and never double dip. We share things like cheese and lunchmeat. My husband will have clean hands and take out what he wants and put it away before touching his bread.

-replaced any baking items/spices/herbs that may have been contaminated with flour (yeah the double dipping thing, I was guilty before)

-checked all my personal care items and made sure they were gluten free. If you have a girlfriend and she is not gluten free, she will need at least gluten free lip balm and lipstick incase you kiss. Your partner, if not gluten free, will need to brush teeth before kissing too.

I know it seems overwhelming at first, mistakes will happen, but it does get easier. I wish when I had gone gluten free I had someone to help me set things up. It would have been so much easier. If you have any questions or if I can help you with anything you can PM me.

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I'm in Memphis, so I'm close to you Samie.

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I am right outside Nashville

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Samie,

Do you go to the support group meetings? I think they're on the 3rd Tuesday at Whole Foods? I haven't been to one yet and was just curious.

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no i haven't i have been thinking about going but just have not been able to go. i probaly will soon got to get another car first

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For my Memphis friends,

Huey's is now serving a gluten-free burger. It's comes on a "lettuce bun." It's wonderful. Tastes just like a regular Huey Burger. Unfortunately their fries aren't cooked in a dedicated fryer, so they're off limits. But at least we can eat their burgers.

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I am still looking for people in the Johnson City, TN area. I would like to get a group going in this area.

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I am still looking for people in the Johnson City, TN area. I would like to get a group going in this area.

What did you find out at Earth Fare? I might be intestered if more people show an interest. I'll have to see what I can dig up.

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I am still looking for people in the Johnson City, TN area. I would like to get a group going in this area.

my daughter (goes to school at ETSU) works at the ruby tuesday up there. she will feed you safely! she recently served a group that had celiac people and they were thrilled that she knew how to keep their food 'good to eat' - she was excited to call and tell me about it :)

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Okay, Great!

Thank you

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What did you find out at Earth Fare? I might be intestered if more people show an interest. I'll have to see what I can dig up.

I asked at the Customer Service area, but they did not have any information about Celiac Groups or Gluten Free Groups. The management people that I spoke with were not very friendly nor helpful.

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I live in Murfreesboro, TN. There are Celiac support group meetings as Whole Foods? As in Cool Springs?

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hello. im from mount carmel and would be interested in support group. i am gluten free now for almost a year and have enormous improvement in digestive health. im neg for blood work and biopsy but was gluten free prior to each.i was pos stool for gluten sens.the diet is tough but so worth it. so thankful God revealed to me to do this.apartfrom accidental ingestions im healthier than i have been in 25 years. would love to share recipes or eating out options locally and even physician suggestions.my md is not convinced because of the neg tests.the stool test was suggested by my dietician who helped me more in 3sessions than docs in 25 yrs.

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    • Certainly seems likely if those levels dropped due to gluten removal. I am just curious, when you had the scope eventually, were you eating it?  Are you feeling any better? 
    • 1. Double checked your antibodies? 2. Those of us with celiac have issues with some nutrients for various reasons, being either we can not absorb enough of them from our foods due to damage to intestines or the new gluten-free foods you changed to are non fortified and do not contain the nutrients you which is especially true if you eat a bunch of processed gluten-free foods. A combination of both of these can lead to extreme fatigues. I found taking Magnesium, and B-Vtitamin supplementation helps (Liquid Health Stress & Energy along with Neurological support same company, Liquid version is easy to absorb and no pills). Look into KAL Nutritional Yeast also, I use it to make condiment cheese sauces, toppings, blend it with egg whites. it contains many nutrients we are lacking and is a great supplement/food to have in your diet. 3, Look into what cycling lady mentioned, this could also be a issues. 4. Had your blood sugar checked?
    • I'm going to play Captain NCGS to Posterboy's Professor Pellagra (No doubt the Marvel and DC Cinematic Universes will soon be bidding for our services) and say that regardless of the blood test results, this: is exhibit one. You have a reaction to the gluten free diet. That doesn't necessarily eliminate fodmaps or issues with other components of wheat, but it's at least suggestive and the main reason I think you need to get back on it and give it a longer go. In fact, as I hinted at in the previous post, I'd be doing my 'goodbye gluten' top 10 croissant and bagel bucket list because I don't think you should go back to it simply based on exhibit one. It's messing with you in a way that it shouldn't. I had sciatic back pain for 20 years which I attributed to a disk injury. It was left sided and when bad travelled down my left leg following the sciatic nerve. I had all the scans, treatments, exercises etc. Nothing really worked and it was at times intensely debilitating.  Drum roll... Gluten free diet cured it. My new theory is that gluten related inflammation was localised in that area and it caused the pressure on the nerve. Now why there and not elsewhere? No idea, but it could be inflammation causing your pain? I went for several diabetes tests because I would suddenly become very weak, hungry and I would feel unwell. Weak, hot, light headed, on the verge of passing out. The tests were normal but I knew that I seemingly had a blood sugar issue. Another win for the gluten-free diet.  It sorted the tremors in my hand (begone thoughts of early onset parkinsons or ms) and the nerve twitching under my eye and etc etc. well you get the point. I've said above I sometimes wonder if I'm undiagnosed celiac but there are certain aspects of NCGS which seem to fit me and maybe you too. My digestion stomach etc is much better now but I wouldn't have said before all this that it was particularly bad. I read this http://www.bmj.com/content/345/bmj.e7982 and I have a similar experience that neuro symptoms were more apparent than digestive in the 'classic celiac' model. (more of that sort of thing here though I already sent you the Umberto Volta I think. I would be fascinated if you, your brother and myself were to do the gluten challenge and then take this test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 what the result would be. But you know what, unless the scientists put out a call for more volunteers I won't be doing it. In the search for answers, validation, certainty, it's easy to forget the real goal, feeling better. After several years on the gluten-free diet I feel better. I'm no longer thinking that the next bout of chest pain will be my last minutes on earth. I no longer worry about going blind because half my vision has gone grey, I'm not trembling, I don't have cardiac arrythmia, I don't have rheumatic pain, I don't have crippling back ache like I'm 40 years older, I don't get  faint, dizzy and heart pounding when I stand up,  I don't have brain fog, anxiety, depression (well sometimes!), painful stomach cramps, weird white tongue, rashes on my torso, horrible greasy skin on face, horrible dry peeling scalp, sores on my scalp and neck, white spots on my fingernails, I'm not sweating so much I have to douse myself in antiperspirant, I don't have all this and more and I don't have a letter from a doctor saying I have celiac and I don't give a **** about it. I don't have gluten and as the Godfather of soul would say...  I feel good  Feel good IT. You've done as much as anyone could to find an answer. Maybe there's one around the corner or maybe there'll be one in 5 or 10 years when the likes of Marios Hadjivassiliou, Umberto Volta or Alessio Fassano have completed their research. Or maybe not or never. It's in the 'nice to have' than the essential's for me now. Do the diet, note your symptoms, stay connected with your doctor so that if there is anything that sticks around suggestive of other things you're on top of it, but feel good and focus on that and enjoying life.  All the best!    
    • I think he's right. It's a hard burden at times at any age but there will be particular challenges for your daughter as kids don't want to stick out or have to be continually monitoring things like their food. Check out this advert from a UK retailer. Beware it's so sugary it could probably give a diabetic person a sugar crash! Maybe you could do similar? Just get or make a selection of kid friendly foods but don't say anything about it to your daughter, just everyone go in and start filling their plates.  If she asks you if you've done anything for her you just tell her that she can eat everything on the table. At least this would show both that choice is still available to her and that because everyone is eating the same thing that she won't feel like she's being singled out?  
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