Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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.

So Frustrated And Angry Today
0

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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! :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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:

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,346
    • Total Posts
      917,409
  • Topics

  • Posts

    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
    • Will my doctor test me? So many symptoms...
      Hi! I was hoping some of you might be able to tell me if my symptoms seem like good reason to be tested for celiac disease... I actually asked my doctor to test me (years ago) and she told me she would not test me because the test is expensive... However, I am now desperate to figure out how to manage my health issues and am willing to find a doctor that WILL test me if my symptoms seem to point to celiac...Here they are:
      I have been diagnosed with all of the following over the last 12 years (I am 22 years old, and have always been a healthy weight/slightly underweight, and quite active):
      Irritable Bowel Syndrome Fibromyalgia Anorexia (started when I was 10, I have been mostly recovered since I was 14) Depression Anxiety Panic Attacks Horrible mood swings (from suicidal to totally fine in a matter of minutes)
        Chronic constipation and bloating Acne   HOWEVER, no one in my family has been diagnosed with celiac....am I wrong to think I have it??
    • Weird Reaction
      Yes, I was surprised about the MSG in broccoli as well. I just had a quick look now as I couldn't remember where I had read it but some mushrooms have it to. A Google search will bring up a few things. I always just thought MSG was an artificial food enhancer!! Insecticides are still a big possibility though. Why do you not want to try organic? We buy organic when we can and fruits and veges that are in season are usually the best and cheapest.  Thank you for the link, Cristiana. Very helpful. I have an appointment with my Naturopath in a couple of weeks and going to have a blood test done before that. She is excellent. Very knowledgeable and loves her work. Until then I'm not taking any supplements. I generally eat pretty well anyway so we'll see what she says. In the past I have used B12 injections (aka Neo Cytamen) which I found much better and safer than taken orally and very cheap. The energy boost was very noticeable. I didn't know it helped with anxiety though. She has also had me on Magnesium, Probiotics and Vitamin D3 and I also make my own Liver Tonic (Milk Thistle, Dandelion Root Powder, L-Glutamine, Taurine and Choline Bitartrate) which I use from time to time for a quick detox. Too much of anything can be bad but I think iron can be not real good in large amounts. Deficiencies can be related to gut health and/or competing for absorbtion with something else you may be taking I found. I'm no expert though but just a few things I've picked up during research. My normal GP told me to just eat some more red meat but I want to speak to my Naturopath first before supplementing. Her knowledge on nutrition is a bit more up-to-date.  I was just sitting there at lunch today after feeling great all morning and had a "weird feeling" come over me. Just a not quite right feeling. Very hard to describe and nausea seems to have returned to. It's funny that as I get older any little thing I get I seem to think it's life threatening even though all the tests I get back say I'm in good health. I guess that's part of that dread and doom and gloom feeling I mentioned earlier. Wish that would go away.  
    • Gluten and panic attacks
      There are great gluten-free pizza crusts out there, as well as good dairy free cheese. I find the key is to add good toppings, e.g. meats, carmelized onions, other veggies, white anchovies. Life goes on. Congrats. Hope the good feelings keep up. 
    • Gluten and panic attacks
      Just want to update incase anyone can find this helpful. I have stopped eating grains and dairy and everyday I'm feeling more and more like myself. It's amazing and I don't really care that I won't eat a regular pizza again. I mean 4 months ago I would have said I would die without gluteny soft pizza, now I am happy to never eat it again if it means I will never have to suffer a panic attack.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,480
    • Most Online
      1,763

    Newest Member
    Luposgirl
    Joined