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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I Need To Complain!
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Littllemel    2

I guess I just need to vent and complain a bit.

My Celiac biopsies came up negative but I definitely have gluten/dairy/soy/corn intolerance and leaky gut. I have had to give up my entire way of life just to live and breathe. My symtoms of leaky gut if I am glutened are severe hypoglycemia, dry mouth, gi problems, reflux and hormonal imbalances such as hot flashes, sweating and being extremely emotional for a minimum of 3 days. I have cried about this every day since going gluten free back on 3/4/12. My doctors suck because I have Tricare and I am forced to use the military system. I am considering switching to Tricare Standard but I will have to start all over again with the Dr issues.

This is the first time in my life I have even considered ending my life. That is how much I hate my new way of life now. But then I look at my beautiful 8 year son and think "no way" can't do it. But it does enter my mind, I can't lie.

To make things worse I had to start a rotation diet yesterday and I hate it. I hate being chained to my house and the grocery stores. All the prep and extra work I have to do to make sure I have food for the work day while sipping on my "yummy" bone broth! Watching others at work eat their hoagies, cakes and pizzas.

I guess I am having a hard time adjusting. Everyone tells me to stay positive and calm. I wish it were easy to do so. I will start seeing a ND on wednesday, I hope she can help me since I have to pay out of pocket. I am also going to start seeing my counselor again. I am sure I freaked a few of you out with my life ending revelations. It's too bad I can't take anti depressents either. I could really use some right now. I am sure a lot of you have it a lot worse then I do but I really can't stand this and I just need a friend to tell who really understands what I am going through and says anything other than "i don't know what to tell you or how to help you" when I tell my story. Is anyone else in Virginia?

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Adalaide    361

I've heard horror stories of the awful medical care we give to the men, women and families who serve our country. I can sort of relate as I currently have medicaid so I had total crap for insurance myself.

It's easy for everyone else to say to just buck up, look on the bright side, blah blah rainbows and sunshine and other useless crap. When I started this, not only did I not see a bright side but I didn't want to see it or even know it existed. I bawled like a child until my head hurt and I had hiccups and I was still crying. I thought it would be too hard, I didn't think I could do it.

Everyone here helped me so much and I'll tell you what they all told me. It's okay to be sad and cry. I didn't pull myself up by my bootstraps, and no one told me to, but they gave me the courage to at least keep my boots where I can find them.

When you have your moments when you just can't do it any more, keep reminding yourself that you have a boy who needs you. Many here have been where you are, it is depressing but it does get better. If you truly come to a moment where you are at risk of hurting yourself call a hotline and talk to someone.

I'm not sure if it's possible for you, but maybe a week or even a few off through FMLA could help you. At least then you wouldn't have to watch people eat what you are craving so much at this very difficult time.

Most of all ((hugs)) and remember you aren't alone.

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psawyer    687

Mel,

It is okay to be angry. Finding answers can be hard, and that is frustrating. The medical community often comes up far short of understanding.

You have come to the right place. This is a wonderful group of people who support each other. You will get through this with a little help from your friends.

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Jestgar    715

It's okay to be sad and cry.

When you have your moments when you just can't do it any more, keep reminding yourself that you have a boy who needs you.

AND

find some treat that you CAN eat and keep that around for when you need to remind yourself that there are bright spots to be found.

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mamajchis    0

I also tested negative for celiac but I know I have it. I have almost all the symptoms of Celiac across the board. I know I have probably had it for 10-15 yr if not much longer. Living without gluten and all the foods you love is something that takes time to get used to but living with Celiac is so much worse.I have chronic fatigue, muscle and bone pain, colitis, diverticulitus, acid reflux, bloating gas, other GI problem. My mind wasn't working right. Could not carry on a conversation without the words getting all scrambled up. I have anemia and other vitamin/mineral deficiencies. I have to take Iron 3 times a day, monthly B12 shots, Potassium and Magnesium. I also take a multivitamin for women over 5o. Sill I am tested low on these things. I have been gluuten free since March 19 2012, so looking to find much improvements with my next lab tests. I have diabetesas well and cannot have sugar or very little. that is what I miss the most and do cheat some on that. I also have soy intolerance. Have you ever looked at the labels on pre-packaged foods? Almost everything contains soy, even ice cream.

I hope you can find acceptance of your disease! It is so much better to go gluten free than to suffer the consequences if you don't.

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mamaw    133

Just sending hugs your way! Part of the healing process is coming to terms with withever we each have been given.. Going gluten-free is ilke loosing a part of your being. From an early age we have been taught that the staff of life is good for us. Only now do we know wheat is not the staff of life any longer.. going gluten-free can cause extreme grief.......

It is not easy for everyone to be gluten-free, it will take time & understanding, no quick fixes but it will come . You may even make mishaps along the way but you will learn from them & grow & become healthy & happy....the main thing I know you don't feel like that at present but one day it all will fall in place...honestly...

You have come to a great group of knowledgable people, ask anything & one will answer...

Hugs & blessings to you

mamaw

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bartfull    565

I don't have the dairy problem, but gluten/soy/corn are my enemies too. I had to get Tylenol made at a compounding pharmacy. Maybe you could get some anti-depressants made?

What I have done to reconcile myself to the oh-so-limited diet is simply look at eating as I would any other bodily function. It is something necessary, it is something I do to survive, and once I have my meal out of the way, now it's time to get on with my day. Instead of looking at eating as a pleasurable experience, I look at eating as something I do so I can have the energy to do the things I love doing. Rather than thinking of the things (foods) I have had to sacrifice, I try to concentrate on the things (activities) I DON'T have to sacrifice anymore because I am no longer so sick I can't do them.

And I keep reminding myself that at least I don't need pills or surgery to get better. Heck, once you get the diet straight, you won't need a doctor at all!

Now all that said, yes, I too have days when it really gets me down. Those are the days I come here to cry on the soft and loving shoulders of the friends I have made here. I have found that no matter how much I whine, they are always helpful and supportive. A big (((((HUG))))) to you!

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Littllemel    2

Feeling a little better today. I think the fact that my hormones are so messed up from this condition plus I had to give up my BC pills to heal my leaky gut. So I am getting so emotional all of the time. Maybe I should get on at BC patch. I think I am too afraid to do it since my hormones are so bad right now.

I seem to be better in the mornings and by afternoon it's waterworks again. I still hate it but I am glad that I at least have this forum to vent in. I would be lost if I couldn't do it.

I went to see my GP last night and I got the same old story. No help at all. I will start seeing my ND tomorrow. I really hope she can help me.

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Bubba's Mom    103

I've thought about ending it. If it were as easy as just going off gluten and everything would be fine..no problem. I seem to be reacting to more and more things though? I take away more favorite foods..and still not feeling good. I totally get your frustration. I see others around me blissfully living to eat, while I merely eat to live.

I haven't renewed magazine subscriptions, because the way I feel right now..who knows if I'll be here another year? I feel that bad. BUT I get up each day and try to make it through. I still keep a log of everything I eat in the hopes that "today" will be the day that I finally figure this stuff out..and can start healing. Today might be the day that I don't get a new symptom? :blink:

We have to remember there are others in our lives that need us, and taking your life is really very selfish. It's the ultimate hurt to our loved ones. They could react by never fully recovering,( with guilt, depression, anger, and a fear of bonding with anyone) and have a completely messed up life? We don't want that for them. We just want some relief..and to feel better.

Let's take one day at a time..and if that doesn't work..take one hour at a time..and if that doesn't work just take 5 minutes. Things will turn around. I'm sure of it.

(((hugs)))

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Is anyone else in Virginia?

No, but I'm in Maryland so potentially not too far depending on where you are. I've seen that there are some DC area support groups that look rather active. http://dcceliacs.typepad.com/. If you're in NoVA some of these meetings may be very close to you. I'm sorry the doctors are not helping you but I'm curious to hear how your NP appt goes. My doc was convinced it was my gall bladder causing issues... luckily she was willing to run the celiac tests but only after I researched on my own and asked for it. If it weren't for the internet and boards such as these I'm confident I would have had my gall bladder removed even though my symptoms were not classic. I've definitely learned you have to advocate for yourself. Good luck to you!!! There are days I feel like screaming as well. My kids school is doing a special program tonight and the PTA is providing pizza before so I'll be eating my gluten free sandwich which everyone else enjoys pizza! To top it off 500 people signed up to come and only about 5 volunteered (unfortunately this is typical) to help so I've now been recruited so I get to serve and help clean up all the yummy stuff I can't tough. ARGH!

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Littllemel    2

I woke up in another one of those moods. It's like I have one good day then one bad. Yesterday was great, but today I already had D twice. I feel like Im starving to death but I am always eating. At least today I see my new ND. I hope she is worth the $240 I have to shell out of pocket! I am also seeing a nutritionist with the military today, at least that is free.

I feel like Im wasting away, I am down to 103lbs and it never seems to stop. My back and kidneys hurt this morning, not sure what that is about. I think I might of slept funny though. I will tell the ND about it.

I can feel my emotions building up again today. I hope i can get through it.

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Bubba's Mom    103

I woke up in another one of those moods. It's like I have one good day then one bad. Yesterday was great, but today I already had D twice. I feel like Im starving to death but I am always eating. At least today I see my new ND. I hope she is worth the $240 I have to shell out of pocket! I am also seeing a nutritionist with the military today, at least that is free.

I feel like Im wasting away, I am down to 103lbs and it never seems to stop. My back and kidneys hurt this morning, not sure what that is about. I think I might of slept funny though. I will tell the ND about it.

I can feel my emotions building up again today. I hope i can get through it.

I hope the ND is worth it. I've never seen one. Please let us know how your meeting goes?

I didn't stop losing weight until they put me on the weak steroid they use for Crohn's.(Entocort) If you continue on the way you have been..maybe you should ask about being put on it? It's not a strong one that affects your whole body. It stays in the intestine, and knocks down the immune response just enough to let your villi heal faster.

Make sure you stay hydrated with that Kidney pain. It gets scary when various other organs start to act up. :o

Remember too.."to the world you are one person, but to one person you may be the world".

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Littllemel    2

I read an article today the microwaving your food causes toxins in the food. Have I just lost another tool I can't use? I have to microwave my leftover food everyday at work. Does this mean I will never heal my leaky gut. I just had to replace all of my teflon pans too. How am I going to warm up my food?? This thing is going to kill me!!

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psawyer    687

I read an article today the microwaving your food causes toxins in the food. Have I just lost another tool I can't use? I have to microwave my leftover food everyday at work. Does this mean I will never heal my leaky gut. I just had to replace all of my teflon pans too. How am I going to warm up my food?? This thing is going to kill me!!

Heating (cooking) anything edible releases toxins as the organic matter breaks down. It doesn't matter how the heat is generated. The amount is a function of how hot and how long.

It is all a question of degree. Moderate heat should not be a concern. Extreme heat for prolonged periods--well, that might be an issue. I don't worry about microwaves or Teflon in normal use.

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sa1937    324

I read an article today the microwaving your food causes toxins in the food. Have I just lost another tool I can't use? I have to microwave my leftover food everyday at work. Does this mean I will never heal my leaky gut. I just had to replace all of my teflon pans too. How am I going to warm up my food?? This thing is going to kill me!!

I'm sorry you are having so many problems and hope you feel better soon. There is definitely a huge adjustment for many when they start eating gluten-free.

That said, yes I do use my microwave and don't give it a second thought. I just refuse to be overly concerned about it. We really can make ourselves crazy worrying about every last thing.

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Littllemel    2

I started the rotation diet last week and I am still having issues. I write everything down and I think I got cross contaminated from a teflon pan a few days ago,so I went out and bought another one. I got sick again. So I brought it back and got an anodized pan, I used it yesterday but I can't tell yet if I am going to get sicker because I am already sick from the other contamination. I know I am having issues with another food intolerance but I just can't put my finger on it. My IgG tests won't be back for another week or so. I already gave up soy/corn/gluten and dairy!! WTH!

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sa1937    324

LM, I don't want to be a downer but you've been gluten-free such a short time so it's probably going to take a lot more time to feel significantly better. Personally I think our bodies can be pretty wonky at first and we can seem to react to most anything and everything. There are times I'm still trying to figure it out...and that's after two years gluten-free. ohmy.gif

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mamaw    133

Not sure ifyou thinkthe teflon may be causing you to feel ill? But try pot & pans that are not coated non-stick pans. Stainless or ceramic.. may be a better choice. I use stainless made from surgical stainless....

Alos at present how many foods are you eating while doing the elimination diet? I understand that most only have maybe three, four foods for two weeks..and they are very bland foods...

Again I must say you need to give your healing more time..& stay away from everything except very clean ,simple , bland foods...drink plenty of pure water to help flush out toxins..

It will get better,I understand that is not much comfort at present...Rome was not built in a day either!

Do you take any digestive enzymes or probiotics?

hugs

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AVR1962    88

Hang in there! I too can tell you a list of horror stories with military medical. If you have the option to go off base, do so and if you have to get a referral, try. I have had to deal with the system for 20 years and while I am thankful we have the medical, you sometimes just do not get good medical attention....plain and simple.

I have been on a gluten-free diet for a year now and at first I felt I was giving up an awful lot. I really had a hard time giving up the gluten. I had to learn to look at what I could eat and not what I couldn't. Forget the non-diagnosis and do what your body needs to get healthy.

Had I waited for tests to be done and show I was celiac I would have been beyond sick. I was bad and no doc could figure it out and I had more tests run that I can even count. I was the one that went off gluten on my own and then the docs paid attention, really? I didn't stop bugging them with my symptoms either, I think they hated to see me walk in their door but little by little this whole puzzle started fitting pieces together and 7 months after I went gluten-free I was diagnosed with celiac.

I have had issues with kidney stones for 26 years and am all too familiar with kidney pain. Do make sure you are getting plenty of fluids. When I get an attack I pretty much go to a liquid diet to pass anything that is giving me issues. Another thing I would suggest to you, or anyone dealing with kidney pain, is to drink all bottled water as tap water has too much chlorine which irritates the kidneys.

If you are finding yourself having highly emotional days mixed with kidney pain, see a doc. When my system was a wreck before I started the diet, I was much as you have described in your original post. Bloodwork showed my calcium was too high, not from supplemts, I wasn't taking any. My system was a mess. Hig calcium feels like you read of women experiencing bad menopause symptoms. I wanted to hide, it was real bad. It is called hypercalcemia and I really hope this is not your case but if it is it needs to be identified and docs need to see if there is a reason behind it.

For me, as soon as I took gluten out of my diet my calcium went into normal range and all of tests connected to the high calcium turned out fine.

Feel free to contact me if you ahve any questions.

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GFinDC    609

Hey, I don't use my microwave either! Darn thing is broke :). But I would use it ifn' it twern't broke.

You are still adjusting to living gluten-free. That is not something that happens overnight for most people. It's a process, just like adjusting to anything is. Of course it would be easier if you felt well physically. That's where changing your diet can really help though. Avoiding the processed foods and sticking to whole foods is helpful. I am not suggesting no processed foods forever, but for a couple months until you get healed up some and get used to eating things that are healthy for you.

There are lots of changes going on in your gut as a result of going gluten-free. Probiotics and digestive enzymes are helpful. I am sure you have read that already. Part of it is just learning to be patient with your body as it heals.

I don't know if taking some time off work is an option, but it might be good to do that for a few days. Maybe a long weekend deal, take off Friday or a Monday? A little extra rest might help.

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Bubba's Mom    103

If I'm going to reheat anything in the microwave I used glass or ceramic dishes..never plastic!

I use stainless steel pans, and have a couple of cast iron pans that I absolutely love. A well seasoned cast iron pan is just as good as..or beter than teflon. It adds a small amount of iron to your food too, instead of chemicals, like non-stick does.

The non-stick pans are never supposed to be heated to a high heat, like you might use in browning meats or frying potatoes, fish, etc. Cast iron does a fantastic job on those things. :D

Honstly..I gave up cast iron years ago because they were heavy and I thought a lot of maintenance. I learned I wasn't taking care of them properly. A well seasoned pan is just rinsed with warm water and scrubbed with a stiff plastic brush and that's it. I wipe them dry and rub a bit of oil on and it's good to go.

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Littllemel    2

Today is another bad day. I got glutened 3 days in a row by CC and I discovered Old Bay and Pears are new intolerances for me. I have been grappling with C&D for the past week. My husband got mad about how strict my rotation diet is, he wanted to add spices to the chicken. He has been sharing dinners with me from the start but I guess its getting to him. At least he gets to eat what he wants at every other meal.

This is one of those days where I just want to throw in the towel and give up. I bet no one would even notice. I hate my life!!

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Bubba's Mom    103

Today is another bad day. I got glutened 3 days in a row by CC and I discovered Old Bay and Pears are new intolerances for me. I have been grappling with C&D for the past week. My husband got mad about how strict my rotation diet is, he wanted to add spices to the chicken. He has been sharing dinners with me from the start but I guess its getting to him. At least he gets to eat what he wants at every other meal.

This is one of those days where I just want to throw in the towel and give up. I bet no one would even notice. I hate my life!!

Oh sweetie don't give up! (((hugs))) When you get to the end of your rope..tie a knot and hang on!

My hubby is only here on the weekends and he crabs about some of the things I cook too. It's not forever..it's just until we heal enough to settle into a routine...with "safe" foods to eat?

This is what works for us...

Talk to your hubby when you've both calmed down. Ideally, not at meal time. Have a plan in place for if he objects to dinner. Maybe he can have a bowl of cereal..or go get takeout (but not bring it home)whatever? He can just say "I'm opting out tonight" (or whatever phrase you agree on) and there won't be any backlash.

I know we expect support..but it's very hard on us..and we have a good reason to eat so restricted. Can you imagine having to completely change your eating because the food bothers someone else? That's what we're asking them to do.

If you have a plan in place ahead of time, whatever that is, there won't be hurt feelings?

We tend to get extra emotional and sensitive when we don't feel good, or have been glutened. A few poorly chosen words can't be taken back..sort of like you can't unring a bell?

I hope you feel better..and figure out what's getting you so it will change.

It's SO hard to work all of this out!

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Littllemel    2

I am trying not to give up but it is so hard. I was sick again last night!! So it was either the melon, peanuts or my smoothie,i am not sure which one though. Is there anything I can do for these aweful cramps! I can't take it anymore!!

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