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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.

Being Pressured Into Eating Gluten/ Gluten Addiction?
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22 posts in this topic

Hello there,

 

I am a DH sufferer and have been (mostly) gluten-free for the past couple of years.  However, I find it extremely easy to slip into eating it every now and then, especially since I do not get any extreme gastric problems, it is just my skin that suffers, and in any case it looks much better now than it did when I just got diagnosed.  Nevertheless, it bothers me, and ultimately I want to be breakout-free.  Yet there are so many obstacles to this, like all the relatives and friends not understanding why I would refuse to eat bread, cakes, etc and sometimes taking it as a personal insult if I do not try their cooking.  In addition, I am between jobs now and struggling to get enough money for rent, so I often can't afford the more expensive gluten-free options and sometimes I just forget that a certain candy contains gluten.  I was wondering a) if anyone has good tips on how to deal with relatives who are unsympathetic (my mother is still convinced my skin issues are results of a drug eruption/scratching, even though I have been off Adderall and painkillers for at least a year now), and B) How do I deal with my own "addiction"/indifference/weak will when it comes to certain tempting foods?  I am doing much better now, but still slip every now and then and end up feeling guilty and that the money I spend on all the gluten-free foods is wasted, since my diet ends up contaminated anyways. 

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As for gluten-free food being expensive- you don't have to eat gluten-free cookies & breads. Lots of regular food is gluten free - rice, beans, meat, fruit, veggies, Chex cereal, tortilla chips, many Frito Lay products, peanut butter, nuts, etc

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I just read your other posts - apparently you have not been diagnosed with DH or Celiac? It might be hard for people to take a self diagnosis seriously. What you chose to do, is your business - with or without a diagnosis. If you think gluten-free makes you feel better, then do it. But, not having a diagnosis might make it hard for you to really get into the gluten-free diet, too. It's only natural.

Edited by kareng
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Thank you kareng, I really am not a believer in gluten-related diagnoses because I've read that sometimes a person might have DH or Celiac but all tests run negative.  I basically am reasoning this way: if it looks like DH, feels like DH, the biopsy results are consistent with DH, and gluten-free diet helps to clean it up, it MUST be DH.  However, not everyone follows that line of reasoning :(

 

Thank you for the list of possible foods, but my issue isn't even being tempted to buy cookies instead of chips at a gas station, it is more of when I am at my grandma's house watching my son on a cold rainy day (so we can't even go to a store) and there is no food available except some bread and cookies, sooner or later I would be tempted to eat some.  Or I would test the soup temperature for my son (who is not on gluten-free diet unfortunately), and inadvertently would consume some gluten.  Or I would order sushi and forget that most soy sauces contain wheat.  I even bought my own bottle of gluten-free soy sauce that I plan to use every time I eat sushi, and try to bring gluten-free snacks everywhere I go, but that is still not a 100% gluten-free diet.

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Thank you kareng, I really am not a believer in gluten-related diagnoses because I've read that sometimes a person might have DH or Celiac but all tests run negative.  I basically am reasoning this way: if it looks like DH, feels like DH, the biopsy results are consistent with DH, and gluten-free diet helps to clean it up, it MUST be DH.  However, not everyone follows that line of reasoning :(

 

Thank you for the list of possible foods, but my issue isn't even being tempted to buy cookies instead of chips at a gas station, it is more of when I am at my grandma's house watching my son on a cold rainy day (so we can't even go to a store) and there is no food available except some bread and cookies, sooner or later I would be tempted to eat some.  Or I would test the soup temperature for my son (who is not on gluten-free diet unfortunately), and inadvertently would consume some gluten.  Or I would order sushi and forget that most soy sauces contain wheat.  I even bought my own bottle of gluten-free soy sauce that I plan to use every time I eat sushi, and try to bring gluten-free snacks everywhere I go, but that is still not a 100% gluten-free diet.

As a Celiac, I take responsibility for what I eat and making sure there is something I can have. I bring food with me if needed. I guess, it I had to test a kid's soup, I would drip it on my wrist or use a thermometer. Honestly, I wouldn't feed my small child only cookies or bread. It sounds like you should bring him food, too, when he visits grandma.

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Hi Raisin!

 

You are close...but with celiac we have to be conscious of every item that enters our mouth. Period. Always.

 

It is ultimately your choice...there is a way out of every situation where gluten may be present.  Find it.

 

Regardless of your celiac testing history -- if you are aware of severe gluten intolerance, your children should be tested regularly.

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And my point on the food is that gluten-free does not need to be expensive - that was one of your excuses for not following a gluten-free diet.

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I am sorry if it feels that I was complaining, I am not, I am wondering more about my own will power.  I find gluten almost as addictive as cigarettes for some reason.  As for my child, I believe he was tested not so long ago and the tests came out negative.  Also, there is food for HIM at home that I do not touch, like fruits, soups, meats, etc.  I also bring my own food but sometimes I bring too little I guess?  Perhaps what I should is stock up pantry there with gluten-free foods specifically for myself, so I would not have to worry about finding something when I come over.

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I am sorry if it feels that I was complaining, I am not, I am wondering more about my own will power. I find gluten almost as addictive as cigarettes for some reason. As for my child, I believe he was tested not so long ago and the tests came out negative. Also, there is food for HIM at home that I do not touch, like fruits, soups, meats, etc. I also bring my own food but sometimes I bring too little I guess? Perhaps what I should is stock up pantry there with gluten-free foods specifically for myself, so I would not have to worry about finding something when I come over.

Once again - you don't need gluten-free specialty foods. Eat the meat and fruit. But you said when you visit Grandma, she has nothing but cookies and bread. That isn't good for your child, either. Eat before you visit? Bring a little snack for everyone? Bring food for you and the child?

Really, it's up to you to chose. We can offer suggestions, but if you don't want to take a little extra effort..... Well...then there isn't anything else to say. You need to be committed to the diet.

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Um, that is exactly why I posted on this forum- to get more suggestions.  I am not complaining or bitching about my condition, I am trying to find new ways to deal with it and asking people with more experience to help.  You do not need to attack me as if I am disagreeing with you.

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I've been reading along and I do not see an attack.

 

Perhaps...re-read and re-phrase your thoughts.  There are many members ready and willing to answer your questions.

 

Hang in there :)

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Um, that is exactly why I posted on this forum- to get more suggestions.  I am not complaining or bitching about my condition, I am trying to find new ways to deal with it and asking people with more experience to help.  You do not need to attack me as if I am disagreeing with you.

Sorry if you feel that way. I'm not really into the " oh, you poor baby! Of course you have no choice but to harm yourself and eaten gluten".

I have made a few suggestions-

Take responsibility for your own food

Bring food with you

gluten-free food doesn't not have to be expensive - you do not have to buy " gluten-free" replacement foods.

Find another way to test the kid's food - thermometer, your wrist, etc

And the main one- decide to take control of your own food choices. If eating a food makes you feel bad in some way, don't eat it.

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have you considered this to be a side effect from the meds you are not taking now>  a rash is a side effect of Adderall.  maybe you are affected by withdrawal.  good luck!

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Hi Raisin,

Sometimes with issues like these where you are torn between actions and having problems with self control, talking with a professional can help.  A psychologist, social worker, or therapist can talk through these issues with you and won't prescribe meds like a psychiatrist does.  If you lack health insurance or the financial resources for this, there are places that do these at a reduced or no cost.  Sometimes they are through churches or universities, or just individual practitioners that slot time for those who can't pay.  In my local area there is a seminary that also has a social work school and they have their last year masters students do free sessions.  If you aren't sure where to find a place like this, you can do an internet search for like, "free counseling -city-" or find your local MHMR office (usually ran by local or state govt) and they will be able to point you in the right direction.

 

When people see you "cheat" on your diet they are definitely going to take you less seriously.  If you want to do a kind of a "reset point"  just tell the people you are around and who display these behaviors, that you have still been having problems with your DH rash, and after talking with your doctor you have realized you should be a lot more strict than you have.  They don't need to know you didn't see a doctor-just a way to get them off your back. 

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When people see you "cheat" on your diet they are definitely going to take you less seriously.  

I think this is a really important point.  The only way to do this is cold turkey. If you've quit other things, you're strong enough to quit this.  And it's very important that you see your reasons for not following the gluten-free diet strictly, and even for how you're interpreting the help that others here are offering, as part of the classic denial and reasoning that comes with addiction.  Not that you are addicted to gluten - believing that will only make you more likely to slip, and I've never heard of a true gluten addiction - just that it gives you yet another reason to think that you can't do this.  

 

Bring fruit, rice, gluten-free soup whatever to your mom's.  Buy whole gluten-free foods to save money, clean ALL the gluten out of your house for a while (sounds like you might need to do this, your son will be fine eating gluten-free foods) and tell yourself you can do this and no excuses will be accepted.  Good luck.

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Hi Raison -

 

What you need to be aware of and to constantly remember is that you have Celiac.  It is a disease.  When you ingest gluten, even tiny amounts of it, your immune system generates antibodies.  These antibodies attack your healthy cells and reak havoc inside your body.  When you eat gluten you are killing yourself from the inside out.  So while you may not experience immediate side-effects, over time you will start to have other much more serious, potentially life threatening issues.  Read the various threads on this forum from folks who have suffered some pretty horrible health complications as a result of long-term undiagnosed Celiac Disease.  Hopefully this will be enough to scare you straight.

 

The other folks had some really good suggestions - take your own food with you and stick to simple, whole foods that are healthy and inexpensive.  You can do it.  Do it for you.  Do it for your child.  Your child needs you to be around.

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If you were taking your Adderall for AD/HD and you are now no longer taking it, this can adversely effect your will power/impulsiveness as well as remembering what you can eat. I have ADD and take Concerta for it. I know I am a complete air-head with out it and would probably accidentally gluten myself consistently. If ADD or ADHD is the reason for taking the Adderall then please consider the fact that your brain is missing some chemicals that help you function like everyone else. Its a chemical imbalance in your body. 

 

I think you may wish to see someone to see if you have depression. A lot of us have it not just because of what gluten does to you but because we have to deal with restrictions, people questioning us, being ill etc. etc. etc. I have had to deal with depression for these reasons and I can tell you that getting help is well... helpful. It can really change things for you, as it did me.

 

I know you don't get terrible gastrointestinal symptoms but that doesn't mean it effects you any less. You need to realize that if you continue to eat gluten, it could kill you, a lot earlier meaning less time with your child. 

 

I think getting a formal diagnosis would help with other people, you can also write off additional food costs. Try getting the test for the genetic marker, this in addition to the positive biopsy results might be enough for a doctor to get a formal diagnosis. You need to just set boundaries and make sure you always have food on hand. When leaving the house it needs to be a priority. Tell people no, then firmly no and then if they continue to bother you about it you need to realize that your health isn't worth it. No one would want someone recovering drug problem/smoker around people who push it on them, you shouldn't be subjected to it either. A good line, if you need one could be,"Would you so persistently push a chocolate bar on me if I was a diabetic?" Some people may never accept your illness and you need to accept that and make sure you put your health first when around them or limit your time with them (obviously, not really possible in some cases).

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I am recently diagnosed, and have struggled with similar emotional responses from myself and from other people around me.

 

My last serious gluten exposure found me unconscious on the bathroom floor, then in an ambulance, and I spent 3 days in the cardiac ward of the hospital.  My heart was affected by my exposure.  While I may be much older than some who are newly diagnosed, I consider 60 to be pretty young by today's standards.

 

I am now hard-core about being gluten free and watching every morsel of food that goes in my body. Religiously reading every label on every pre-packaged food I consume.  I am learning (LEARNING is the key word) to say "I'm sorry if my disease offends you, however I prefer to be alive and not in the hospital due to eating gluten. I'd love to come to your house, however, I will have to bring my own food with me. I don't want to offend you, and I want to spend time with you.  If this is a problem for you, I understand."
And then I move on.  It's hard. And as others have said, you find out who your true friends are.

 

When I go out and think I may be hungry, I take things with me.  Little baggies of nuts.  Heck, even those fresh fruit squeeze pouches of fruits and veggies come in handy if I'm hungry. They don't require refrigeration, take up little space and aren't heavy. A Banana is easy to tuck in my purse. A baggie with some of my favorite gluten-free crackers.  Little packs of sliced pepperoni (gluten-free). A foil bag of salmon or tuna for a quick protein fix. A bag of potato chips that are from a gluten-free facility.  I even picked up a special "food bag" to carry my snacks in if I know we're going to be out and about for a while.

 

It's extra work and requires extra planning.  It makes me more conscious about what I am eating, why I am eating it and when I am eating it.  I'm sorry if Grandma dismisses your feelings and doesn't respect your choices.  But you are an adult and they are your choices.

Print out some info about Celiac and HD and give it to her to read at her leisure.  Educate her.

 

I prefer to remain alive.  While your disease hasn't progressed to the point of being life threatening, if left untreated (by continuing to eat gluten) it can very well progress to the point that it is life threatening. 

 

I have way too much to live for -- and food containing gluten could kill me (maybe not that instant, maybe not today, but eventually it will destroy my body) -- and none of it tastes good enough to risk my life.

 

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My last serious gluten exposure found me unconscious on the bathroom floor, then in an ambulance, and I spent 3 days in the cardiac ward of the hospital.  My heart was affected by my exposure.  While I may be much older than some who are newly diagnosed, I consider 60 to be pretty young by today's standards.

I think Cathy deserves an award for best attitude towards her new gluten free life!  This is the wisdom that comes with age, folks.  I am only 5 years younger than Cathy but she is right.......60 is definitely on the young side today.  Maybe because some of us get so seriously ill from gluten ingestion that we accept things more readily than others but Cathy's attitude towards what others may think and say is spot on.  Nothing of what anyone else thinks/says matters....only your health and the work a person does to stay 100% gluten free.

 

Good work, Cathy!  :)

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I think Cathy deserves an award for best attitude towards her new gluten free life!  This is the wisdom that comes with age, folks.  I am only 5 years younger than Cathy but she is right.......60 is definitely on the young side today.  Maybe because some of us get so seriously ill from gluten ingestion that we accept things more readily than others but Cathy's attitude towards what others may think and say is spot on.  Nothing of what anyone else thinks/says matters....only your health and the work a person does to stay 100% gluten free.

 

Good work, Cathy!  :)

 

I second...the award goes to Cathy :)

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Thanks for the "votes of confidence".  It's hard to stay strong, some days.

 

Some days are just rough ones. And some people are harder to deal with than others.
 

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Thanks for the "votes of confidence".  It's hard to stay strong, some days.

 

Some days are just rough ones. And some people are harder to deal with than others.

 

 

Ain't that the truth!

 

On those days, come here -- we "get" it :)

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