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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Jmg

Write a message to yourself on the day you found you had celiac

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You find a magic typewriter in an old musty box in the attic. It will allow you to write a message to yourself on the day that you found out you had celiac (or gluten sensitivity etc). You can include anything you've learned about yourself, handling celiac, good strategies for coping, how to deal with emotional issues, hostile reactions from friends and family, travel, work, dating. etc. 

You may not include details of who won the World Series / next weeks lottery numbers etc as this would break the space time continuum and the typewriter will give you a nasty shock if you even try it, so just keep to the celiac insights. :P

 

 

 

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You finally know what has been slowly and painfully killing you. Recovery will not be quick but it will come. You will find yourself running up the stairs in 6 months and will sit sobbing at the top for half an hour. It will be about 5 years and lots of PT before you will walk normally again but not long ago you remodeled the bathroom because you were told you would be in a wheelchair soon. The nightly agonizing hours in the bathroom will be replaced with a solid eight hours sleep now except when you accidentally get glutened. Those glutening will come farther and farther apart though as you get better at the lifestyle.  It seems like there is nothing you can eat right now but that will change as more folks are diagnosed and more foods become better labeled.  Your skin will heal and your hair will grow back. That early gray isn't going away but eventually you will prefer it to having to dye it every three weeks or so because it now grows faster than it has at any time in your life.

You will have lots of times that you feel sorry for yourself but a quick trip to look at that tackle box full of meds you no longer need will be a comfort. You will have some residual damage even years later but nothing you can't handle. You will be able to work again and to go back and finish those degrees but you will go back to school too soon. Don't be too hard on yourself as a couple years after that you will have recovered enough to take and pass those classes. Your life isn't over with this diagnosis it is just going to be different. But it will be a better different without the pain and moodiness. Eventually your family will understand and stop the eyerolls because they will see you healing. It will be hard socially but your social life was always tough anyway.  The important thing is you will get your health back and that is more important than grabbing a quick meal at a take out joint.

Hang in there.

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This might seem daunting but you will heal, you will be able to eat some foods again soon, but first you have to let go of some extras to speed up healing or your going to develop a few more issues your going to regret. Drop the processed crap, take your time cook whole foods from scratch. No sauces condiments, etc. Drop oats, do not deny it you know you feel edgy when you eat them, While your at it drop all grains, sugars, and carbs. Look up paleo diet, for now you can enjoy meat but if you keep on eating carbs you will loose the ability to eat meat period. You will also develop a corn allergy if your not careful, either the gluten CC or other complications best to limit corn intake and start working on removing it from your diet. Enjoy your grandmothers tamales once a month, learn to make them from her. You have or will develop something called ulcerative colitis, perhaps the paleo diet will prevent this or if you already have it it will save it from getting as bad as I know it did. PS Nunataurals pure powdered stevia, and eyrithrol will be your best friends but got easy on them too much will lead to gastric distress early on. And if you crave deserts like I know you will use nutvia coconut flour mixed with eggs for a base, use ground flax, and chia for thickening also. a little goes a long way and you have to let it set up a bit this will become a base for a lot of your food.

Look at investing in a stone mill nut butter grinder, almond butter will be your best friend. To offset cost and make a road map out of life, develop grain free baked good and sugar free options. Artisan Almond Butters, etc. and sell them at farmers markets. You are meant to be a guiding light and to help others with this disease. Do your research look up Celiac.com,

Get your own cook area, set up a small dedicated table with dedicated cookware else where, either your room or the bathroom. Let your mother have her kitchen and make your own this will ease family tensions. Invite her to learn how to cook in your area and stay safe. Practice with her and perfect your gluten free dishes early on for a successful chef job later on. You will need a small tabletop convection oven, rice cooker/crockpot/pressure cooker, microwave, nordicware cook ware, mixing bowels, spatula, freezer paper for work surfaces, etc. ALL NEW, DO NOT try to clean you old stuff IT WILL NOT WORK (trust me I tried it) Get a new blender and hand blender also took weeks to figure that one out.

Supplement wise go look up lucky vitamin.com will save you tons of money. your probably feeling constipated still right? Get Natural Vitality Magnesium Calm and ease in to the dosing at 1/4tsp and ramp it up over the next few weeks, do not be discouraged if it gets really bad at first. Also look up Liquid Health, Stress & Energy and Neurological support they will be your life savers. Give up smoking now look up CBD oil, you will find it works much better for stress and anxiety attacks.

If you have digestion issues look up enzymes from Jarrow, do not fear take 2-3times the does if you need them.

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3 hours ago, ravenwoodglass said:

That early gray isn't going away but eventually you will prefer it to having to dye it every three weeks or so

How did you transition from coloring to natural gray?? It seems like a mystery to me! (Sorry OT)

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1 hour ago, Victoria1234 said:

How did you transition from coloring to natural gray?? It seems like a mystery to me! (Sorry OT)

I used a root coverup and then a temporay color and when it had grown out enough I got my hair cut short. 

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1 minute ago, ravenwoodglass said:

I used a root coverup and then a temporay color and when it had grown out enough I got my hair cut short. 

Awesome! Thanks!

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4 minutes ago, Victoria1234 said:

Awesome! Thanks!

Some folks will also get their hair frosted to disguise the growth. My hair is too dark to do that though.

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1 minute ago, ravenwoodglass said:

Some folks will also get their hair frosted to disguise the growth. My hair is too dark to do that though.

My gray is very white.........I went from brown to white almost overnight.

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You've just realized you have a health condition which can't be diagnosed formally. You haven't felt ok for quite some time, but didn't really know why. You were thinking it was just stress.

But then there was a couple of weeks which weren't particularly stressful, so you were wondering 'why am I feeling worse'? You felt like there was an underlying cause you were unaware of. You knew you were meant to figure it out and finally did.

Advice:

Doctors don't know much about this condition, so don't rely on them. Do your own research.

Since you don't have an official diagnosis, don't be surprised if people don't understand. They may even think it's just a product of your imagination... Well, it's not your duty to explain the details to everyone. And it's not your obligation to describe all the positive effects the gluten free diet brings about to those who are (and always will be) sceptical. This is not an argumentation/persuasion skills training. You're not a lawyer or a salesperson.

The situation may be different in 5/10/15 yrs... Who knows? There is research ongoing. Maybe people will be more aware, maybe gluten free restaurants will be as common as other types of rest., maybe potential negative effects of gluten won't be a kind of a secret anymore.

Don't feel guilty about not being able to realize this sooner. There are 'stakeholders' whose interest is definitely not raising the awareness about this issue. And this has an impact on our society.

Their main interest is making profit. Gluten products are profitable, to say the least. On the contrary, the gluten-free diet - the cure - is not currently viewed as a product that much. However, from a marketing perspective, it could be seen as a product. There is potential. There are unrealized business opportunities. There is a gap in the market.

Who knows what the future holds?

Carry on with your life and try to make the best out of this situation.    

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You know all those specialists you are seeing? They don't know a thing. Especially the obgyn who is getting you to do the hysterectomy. There's nothing wrong with your uterus. And stop letting all the docs push drugs on you. No amount of painkillers is going to stop that abdominal pain. It's just making things worse. All those months off work is just wreaking more havok on your family and body. You're getting weaker every day. Listen to the crazy idea your husband has that it might be a gluten issue wrong with you. Remember that dh your derm said you had? Guess what, that means you had celiac. And you could have been gluten-free for the last year and skipped all this pain. Maybe you can go scream at them once you recover.

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On ‎10‎/‎18‎/‎2017 at 5:05 AM, Jmg said:

You find a magic typewriter in an old musty box in the attic. It will allow you to write a message to yourself on the day that you found out you had celiac (or gluten sensitivity etc). You can include anything you've learned about yourself, handling celiac, good strategies for coping, how to deal with emotional issues, hostile reactions from friends and family, travel, work, dating. etc. 

You may not include details of who won the World Series / next weeks lottery numbers etc as this would break the space time continuum and the typewriter will give you a nasty shock if you even try it, so just keep to the celiac insights. :P

 

 

 

Dear AWOL Cast Iron Stomach,

Your husband is right bread is bad for you. Of course it's more than bread and gluten, until now it was amateur hour trying to self diagnose and tame this "lion". However they let you down. You slipped through the cracks over and over again it is not your fault your not the Dr. You made mistakes and errors acting like a celiac , not knowing for sure you were, and not feeling like you could fully claim to be or reach out for support . Now you know your husband was closer than any Dr. up until now to determine your illness. Now something is in your record, now hopefully you will be dismissed less,respected more, maybe they will realize its an actual condition going on- not all in your head. Will they? Who knows! Do you care?

This is now official, now explained, you not only have to give up gluten, but milk, and corn. In fact give up 98% of processed anything. The cluster of lifetime symptoms were not  "just you", "in your head", "you are not a difficult patient", "when the Dr or nurse looks at you like a nut job you don't have to feel the dismissiveness and condescension. It's an illness and nothing to be shameful of  what is shameful is they and their colleagues missed you failed you.

In fact being missed for 4 decades is unjust to you. You were missed time and time again from age 5 to 43, decade after decade after decade, symptom after symptom. It's not that you didn't try from the 5 year old begging to go to the Dr, to the 20 going to the hospital again for another bout of gastroenteritis hoping to get an IV, to the thirty year old saying something is wrong why is this happening, to the forty something a restaurant fed me gluten when I asked for gluten-free, I have been gluten free for 3 1/2 years ,  I have more symptoms and pain than before . I felt so good for those gluten-free years- please help me-make it stop.

So many things explained it makes you experience a range of emotions.

Grateful:

Relief and gratefulness someone finally agreed to send you to someone to test you. She saw past the other diagnosis' and the albatross IBS diagnosis.

All the ages and stages of symptoms are explained they all fit. Everyone of them! Someone else also has had them. You are not alone. Read the forum-you fit like a glove.

Anger:

Anger for the way you have been treated by the medical community, family, some ex boyfriends, friends and coworkers. Anger for the length of time you endured this.

Hurt:

Hurt for the times people said unkind things to you when you were symptomatic or flaring . you are experiencing symptoms that change your body people are rude to congratulate you on a "pregnancy" you didn't announce or ask why you are not slim when you hardly eat.

you are not over emotional -  you are suffering from neuro symptoms, you are not making this up for attention

Sad & Guilty:

Can I work again? Do I want to work again? What kind of work can I do now? Can I find a job and work PT from home? You didn't envision this your husband having to be sole bread winner now what? I am overwhelmed thinking about this-stop?

You now have closure and know how and why you lost your first pregnancy.

You now know why you were high risk, complications,  with your children in Pregnancy & Delivery that they couldn't be explained back then

It explains why in pregnancy you lost weight and why your morning sickness was extreme and seemed to last longer than anyone you knew,  that your Puppp rash was likely misdiagnosed DH

It is not your fault none of it.

Please forgive yourself for what you did not know. Your children forgive you. Believe them when they say its not your fault. You can cry, but you can no longer blame yourself. You are a good mother just one with an illness your children will learn to accept.

Withdrawn:

Why are you withdrawing from your husband? Should you ask him if he wants a divorce? Should you push him away? You didn't know before marriage what was happening you knew something autoimmune was brewing shortly after, but nothing showed on tests. Was this unfair to do to him? Doesn't he deserve someone better? Someone well? Now you can't retire and travel the world as society retirement cliché dictates. Can you afford this illness ? How will this financially impact your spouse, your family?. Why did you do this to this poor man? You are so selfish, you wanted marriage and kids, but was this fair to them?

Don't your kids deserve a healthier mom? How will this impact them? Oh my gosh are they going to get this too? Will they grow to resent you? Your illness and diet has taken over their lives!

Oh gosh no one say hi to me-please. I hate people and I am too sick to pretend and be fake friendly today. I don't want to tell you I am ill. I don't want to talk about this. I have to absorb this. I hate you people for being healthy. Don't tell me I don't look well. I will snap, I don't want to snap, I am irritable ,and don't feel well. Just keep giving off the unapproachable vibe keep them away. 

Am I strong enough to do this?

Acceptance:

Calm down the inflammation, lack of nutrients, and GI damage is messing with your head. Your husband said for better for worse. Your kids have no choice you are their mother and you are a good mom -you have always been, always will be even on your worst day. If they get this they will be ok. You are strong enough to do this you are just ill and most importantly you must remain here in case they get this so you can guide them and be there for them. Got it? Go on the forum you are not alone it will be ok. You will get this lion back in the cage and manage it. It will be ok. If you can't travel in retirement one day you will find other hobbies or things to occupy your time. He's not going to leave you over this. If he does it will be ok. You'll manage-you always do.

You have an answer, you knew it was coming, keep reading, learning, seeking support, and one day it will all work out.

You will process all this and will be at peace-until then keep going and above all AVOID GLUTEN!

 

 

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