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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.

Advice?
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Hello there,

I'm new to this. I was seeking advice. I'm a 21 year old, who's struggled with coeliac’s for about four and a half years now. I've found mine is very sensitive, and it has caused me a lot of issue in the past. Anyway, the reason for me posting is that I work in ASDA just now, where I have done since before I had this. I'm just a shelf filling lackey, mainly to give me money whilst I'm still studying at college etc. Just recently, they've informed me that they are training everyone to be checkout trained so when the queues are extremely busy we have to come of our own departments to help the checkout operators "bust" the ques. It's called being a queue buster.
 

However, I can't worm my way out of it this time round - after avoiding it for several years. My issue is nothing to do with it being an undesirable job, frankly I'd prefer it to some of my responsibilities (such as waste scanning, dealing with mouldy milk and off fresh meat etc.!), but rather it's to do with my rational insecurities and anxieties I've garnered due to my life with coeliac's. In the past, I've felt like despite religiously (and obsessively at times) following my gluten-free diet I still experience pretty severe symptoms; stomach cramps, sickness, etc. Thus making it very unpredictable and hard to manage. Additionally, I've felt like they have been particularly exuberated by the occurrence of high stress/anxiety.

 

Now this is a vicious circle, because in this case I'm not only stressed about what I have to deal with when a queue buster call goes out, but I'm also stressed/anxious about the situation I could find myself...particularly should I be forced into this duty when I'm having a very bad "glutened" day. It's something I always worry about, for example when I had to sit all my high school exams etc. I'm so anxious and self-conscious over all of this (not to mention terrified) that I'm already making myself ill with worry over how to deal with this, hence me asking for advice from other ceoliacs - particularly what my rights are and any actions I could take to get out the situation.

So far, I've genuinely really enjoyed my work time there - particularly as (unlike my school years) I had the freedom to deal with my illness when the occasion occurred without having teachers breathing down your neck making you explain yourself and what not. However, now I fear my work like too will be turned into those terrible times (bearing in mind I was in my last two years at school when I got diagnosed, so was difficult adjusting to the gluten free life etc). This morning, I got an emergency DR appointment at my local GP's. Due to it being an urgent appointment it was not my usual lifelong DR, but none the less I explained the situation briefly and he wrote me a letter to hand in to my work briefly explaining the situation (though I feel he could of stressed my individual circumstances more) I'm just uncertain of what to do now, and how to react should they try and force me into this. It's at the stage where I genuinely would rather quit.

Any advice would be great, and I would be forever in debt to you. I've also done some additional research (as I think it's really important to keep up to speed with the fast progressing understanding of this) that helped me discover that stress can in fact induce you to have your symptoms, or to worsen them. Additionally, I discovered things such as new studies showing up to 90% of people will suffer symptoms despite being on a gluten-free diet Ergo, I think this backs up what I've experienced and explains why I may find it so troublesome and so unpredictable and such a bane on my life. Finally, yes - it is just coeliac disease I have. I've been back and forth to the dr's with my occurring issues, as well as going to my 6 monthly check ups at the hospital coeliac clinic and what not. I've also had additional endoscopy's verifying there is nothing else.

 

http://celiacdisease.about.com/b/2012/11/08/study-gluten-ingestion-symptoms-frequent-despite-gluten-free-diet.htm

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Welcome to the boards.  :)

 

I've never worked in a grocery store before, but I am not sure how you would be glutened at the checkout. I know those areas can be quite dirty but I imagine that if you wear plastic/latex gloves and then wash thouroughly once you are done, you should be fine. The only danger I can imagine is if a bag of flour "poofs" out some of it's contents into your mouth. I imagine that your awareness of the situation would keep your hands away from your face and mouth so you wouldn't get cc'ed that way.

 

Best wishes.

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The only concern I would have may be what you are already thinking of since you mention being worried about doing this if you have had a bad glutened day. That concern would be cash handling in a not so "there" mental state. This is something you can discuss with your manager with you note in hand to see how best to tackle it. There is of course an inherent risk, and whether or not fair to you, the store may choose to staff someone who is capable of doing both and cut your hours or try to reassign you to another position that you feel capable of filling all the roles of.

 

My bigger concern is that you don't feel well. You need to have a good close look at what you are eating and reexamine your routine and food to be sure you are not getting some sort of straight up gluten or possibly cross contamination somewhere. Just because you have had follow up endoscopies does not mean that they would necessarily find and get patchy damage from occasional contamination from a mostly gluten free celiac who is healing. That aside, many here find that they get symptoms just as if they had eating gluten from other types of food intolerances. You really need to sort out what is still making you sick because there is no reason at all to continue to go through your life being sick, you are far too young for that.

 

My two cents about that study? It is always a good idea to look for a second study to back up the data of a first to be sure that the results can be duplicated, instead the way that reads is less like a study and more like a survey. Additionally, always view with skepticism a study or survey done by the very person or entity that is set to profit from the outcome of that study. Such as, a pharmaceutical company that does a study saying that nearly every celiac in the history of ever continues to be sick no matter how hard they try not to be... and is in a race to have the first every drug to treat celiac on the market.

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Okay I work retail and have actually worked as a grocery store cashier in years past. Now my first fear for you would be brain fog when dealing with money. Especially because the thieves will know you are "new" as a cashier and try to get you to make change. It's a very common scam. They trick you into giving them back more money than you actually owe them. (I think they even showed this in old Vauderville routines it's that old of scam) If you've got brain fog you are a super easy target. I have had such severe brain fog that on a couple occasions when a customer handed me money I had no idea what it was. I knew it was something I was supposed to do something with but I didn't know what. It took me a few seconds to realize what was going on and in that time the customer was giving me a dirty look. (Like he thought I had an IQ of 40 )  

 

My second fear would be things like flour bags where product could be air born. I'm clueless how to handle that I really am. I'd love to work at my local healthy grocery store but I really wouldn't feel safe handling flour bags, as they do sometimes bust and leave flour all over the other bags. Next would be the cookies from the bakery and the customers who had gotten free samples. If they let you wear gloves that might help. Questions: How does it look to the customer if you are wearing gloves? Can you count change in gloves?

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I may be reading this wrong as it is early and I have only had one cup of coffee so if I am off base forgive me.

It sounds to me like your fear is not getting glutened it is needing to use the restroom NOW and not being able to. I also have a great fear of that because of nerve damage and having had 'accidents' before I was finally diagnosed. I also have other anxiety issues unrelated to gluten and was diagnosed with PTSD. Because of that I have a script for an antianxiety med that I could take when needed. I take a very small dose, much less than prescribed but enough to take the edge off. I don't know if this might be something you could discuss with your doctor.

 I just left a job due to being trapped at a registar at a company that wouldn't allow bathroom breaks if there were any customers in the store. It is hell when you are celiac and in that situation. But the meds helped me to get through those work shifts without getting panic attacks. On bad days I took a half dose of Immodium tablets as a 'just in case' before I went to work. Meanwhile I kept looking for a job that was a better fit.  

I did finally find one and now work in a motel with a great boss and if I need a bathroom break I can just take one. As a bonus I also make $3 more an hour than at the store. 

So to make a long story short, if you need meds to get through this don't be afraid to take them. Be honest with your doctor about how severe your anxiety is and if you do take them short term take just enough to stop your symptoms as some doctors will over prescribe. If your med makes you sleepy or dopey then IMHO the dose is to high. It doesn't hurt to talk to a counselor about your fears as many of us after years of illness are left with anxiety about our symptoms and fear of their return. Do take a good look at what you are eating and how it is prepared to lessen your chances of getting glutened. Meanwhile look for a job that is a better fit.

Best of luck to you. You will get through this but it is a fight at times.

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    • 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.  
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      I have not. I'll talk to my doctor about it
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