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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.

So Frustrated And Angry Today
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9 posts in this topic

Hi everyone,

Normally i hate to complain, but i'm bottling up all this frustration and anger and i feel like i should just get it out. So here i am.

I feel like my whole body is shutting down and there's nothing I can do to make it better. After years of stomach problems that I ignored, I've been getting soooo progressively worse since October. I cut out gluten soon after, on the suggsetion of a few people who knew someone with celiac, because I couldn't get in to see my doctor, and when I did she was kinda rude and very unhelpful.

The diet seemed to help right away, but I'd still get sick off and on. I'm not sure if I'm being exposed to gluten (possible, since I end up eating out more than I should), or if there's something else going on.

But since getting travellers' diarrhea in indonesia a few months ago, I've been constantly sick and can't seem to get better. I took antibiotics and now test negative for parasites or bacteria, but am still sick. The diarrhea, cramps, etc are so much worse, but then there's also fatigue, weight loss, muscle pain, joint pain, numbness, dizziness, and just this horrible general feeling of illness.

I'm 26 years old and, before getting sick, had such a full and active life. I feel like being sick defines me now.

I'm so tired all the time -- at the worst point two weeks ago I could barely form a sentence, it took so much effort to think and talk. I feel like I'm wasting away -- physically, mentally, emotionally.

I've been trying to stay positive -- I know being negative and stressed about being sick isn't helping me get better. And I know I have so much to be thankful for -- wonderful people in my life especially -- but I feel so hopeless.

I've done so much to improve my health -- quit smoking, gave up caffeine, gave up all my old favorite gluten-filled foods, avoid processed foods, cut way down on alcohol. I know it's helping, but I'm still so sick, it's frustrating to feel like I'm giving up things for nothing. (I know it's not nothing, it's my long-term health, but day-to-day I sometimes lose sight of that).

I think back to November/December when I thought the worst thing in the world was giving up pizza and beer. Now I would gladly give up anything if it meant getting better. I guess I've learned a lot from being sick, but on days like today I feel like yelling, okay universe, I've learned my lessons, now let me heal.

I don't even know if what I have is celiac -- I finally have an appt with a GI specialist next week but I've been gluten-free for months. I've had so many frustrations with doctors that I feel like I'm left to heal myself. I could deal with anything if I just knew what it was and how to get better.

Whew, okay, thank you for letting me get that out. And, thank you all so much for the advice that I've been reading overt the last months, and providing this space for getting out this negativity. I hate to share it with others.

I guess I'm going to try to be more strict on my diet -- stick to really, really simple foods and stop eating out (I know, seems obvious, but I hardly see my friends, so when I do....) Anyway, thanks again.

Wishing you all good health,

Lisa

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Lisa:

I normally am over on the "children with celiac disease" forum, but I try to lurk here and there since I usually learn something that is good for my son's life. I know how discouraging being sick can be and didn't want you to feel all alone after posting. I think everyone has days where they just can't stand it anymore and need to vent. Good for you for recognizing that need. Better for you that you should eat carefully; dining out is such a problem, Go out with your friends, but maybe decide ahead of time what you are going to eat? drink? Being healthy is the best anti-depressant :)

And never put up with rude or unhelpful doctors. Lay down the law. Read up on celiac disease and know what you need from your doctor to get healthy. Medicine is not about diagnosis, it's about people and their life and you are completely right to want help from your doctors.

My son said once that people would tell him to have a good day, but some days aren't good, and they aren't bad, so he invented the term "going forward days" and that's what we'll hope for, for you

Joanna

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Cornygirl, your situation sounds difficult and complex and I'm sorry you're having such a hard time. It may be you have multiple conditions and celiac disease may be (probably is) one of them. One thought that came to mind when I read your post is additional food allergies. Perhaps take 2 weeks and resolve not to go out at all but stay in and eat the mildest of foods and see how you do. Especially avoid the common allergy foods: dairy, nuts, eggs, yeast, and soy. You might want to look at the paleo-lithic diet--it's rather intimidating in its restrictions, I think, but it could be tried to just 2 weeks to see if it's worth it.

I know about the going out dilemma. So much of our socializing revolves around eating. I'm still working this one out for myself. One thought I have is to eat before going out and then just having something "token"--a drink, a salad with oil & vinegar perhaps. Do you use a dining card that explains celiac disease? I've found this helpful in restaurants, though it's no guarantee of course.

If you can afford it, you may want to check out the tests offered by enterolab. Figure if you're not going to eat out the money you save could go for the tests, maybe? It's true if you are gluten-free that a blood test may yield a false negative so the enterolab stool test may be more accurate for you.

I know about fighting with doctors to get help. It's especially difficult when you have no energy for the battle! My own doctor was ready to send me to a shrink. Actually, depression IS a component of my condition over and above my celiac disease. The fatigue I had is diminishing the longer I remain gluten-free.

Anyway, hang in there. You CAN find your way to excellent health! :)

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Lisa,

The really good thing about this point in time is, there is not that much unhealthy processed gluten free food to be had. Soon people will go from wheat breads and cookies to gluten free breads and cookies, without missing a step. They will remain fat, undernourished, and unhealthy, while thinking they are doing something good for their bodies.

The blessing of the moment is you can develop a healthy diet for the rest of your life.

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All,

Thank you so much for your warm and thoughtful replies.

I'm taking your advice and sticking to rice and chicken, maybe some other very mild foods for a while, then slowing introducing things one at a time to check how I do.

At this point, the diarrhea and stuff is minor compared to the scarier things I've been experiencing (it's so frightening to wake up and realize you've lost sensation in your body -- and i'm in my 20s!). But I know they could be related, so I guess I should start with the food.

I do know how lucky I am, and I really believe that if I ever figure out what's wrong with me and get better, I'll live a much healthier and content life in the long run. Or maybe if my body just has more time to heal on its own. The best thing for me I think is that things I used to worry about seem so trivial now -- and that really is a blessing. There is so much in the world to be joyful about, and so little that is truly worth worrying over.

Thanks again all for your help.

Off to have a little rice picnic in the park (before it rains!)

Have a beautiful weekend.

Lisa

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Lisa-

You have an awesome attitude twards all this. That is a great strength for you to have during this time. Don't loose sight of the goal (being healthy) Healing just takes time. The people here are a great resource so use them! Take babysteps to get to your goal.

-Jessica :rolleyes:

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Lisa, Have you had your B12 level checked? I've read that that can be related to neurological symptoms such as those you have described. The malabsorption of celiac disease can result in B12 problems. Just a thought.

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Hey everyone,

Thanks again for the great advice. You're all wonderful.

I was wondering, how do you usually add foods back in to test? How many times should I eat the food -- is once enough, or should I have a little for a few days in a row? How long should I wait between different foods? A couple of days?

I just started taking B12 sublingual tablets -- thanks for that suggestion. I'm also making another appt with my regular doc, in addition to the GI specialist this week, so I will ask her about testing me for vitamin deficiencies.

Peace,

Lisa

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I'm no expert but I think have a food one time and then wait a day is enough to see it's really going to zap you. If it doesn't hurt you, then it's probably safe.

Also, I wonder if you have had your pancreas and liver checked in your workups?

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