Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

So Frustrated And Angry Today

cornygirl

Recommended Posts

cornygirl Rookie
cornygirl
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ryebaby0 Enthusiast
ryebaby0
Posted

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

YankeeDB Contributor
YankeeDB
Posted

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! :)

travelthomas Apprentice
travelthomas
Posted

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.

cornygirl Rookie
cornygirl
Posted
  • Author

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

angel-jd1 Community Regular
angel-jd1
Posted

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:

YankeeDB Contributor
YankeeDB
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cornygirl Rookie
cornygirl
Posted
  • Author

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

YankeeDB Contributor
YankeeDB
Posted

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?

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748
    AndiSchweb
    Newest Member
    AndiSchweb
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.