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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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Yeah that is close.

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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 will have to try that.

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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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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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