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

Sooooo Tired...all The Time!


kaki-clam

Recommended Posts

kaki-clam Enthusiast

It seems as though I have made it through the "hungry all the time" stage, then on to the "severe cramping-three weeks on the couch crying" stage, and have now made it to the "so damn tired all the damn time" stage!!! it is all I can do sometimes to drive myself safely home from work. When I get home, I can't function..I literally sit on the couch staring at the TV, I don't know what is on, I can't make a meal or clean up after one if I do manage to make it. My arms ache, my body is sluggish...I can't comprehend things...I am in a haze.

I have been gluten free for 4 months now....every time I post on here, the reply is "it will get better" I can't take it anymore....it isn't getting better. I have been tested for other potential food allergies, diabetes, and other such matters, but other than the Celiac's nothing else is wrong with me. I see a therapist, he doesn't think I am depressed...I don't know what else to do or what else to ask the doctors to look at!!

I have missed so much work, and although I am covered under FMLA, I am taking this time unpaid. The smallest amount of stress causes cramping stomach pain....can anyone help, can anyone relate? Is this just normal Celiac's??? Help, I am at the end of my rope and the knot is coming untied!!


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

Allergy testing really isn't all that reliable. The beast way to find out if other foods are bothering you is by either keeping a food diary, or by doing an elimination diet.

You could start by cutting the biggies out of your diet - soy, casein, eggs, corn - and seeing how that makes you feel.

YoloGx Rookie
It seems as though I have made it through the "hungry all the time" stage, then on to the "severe cramping-three weeks on the couch crying" stage, and have now made it to the "so damn tired all the damn time" stage!!! it is all I can do sometimes to drive myself safely home from work. When I get home, I can't function..I literally sit on the couch staring at the TV, I don't know what is on, I can't make a meal or clean up after one if I do manage to make it. My arms ache, my body is sluggish...I can't comprehend things...I am in a haze.

I have been gluten free for 4 months now....every time I post on here, the reply is "it will get better" I can't take it anymore....it isn't getting better. I have been tested for other potential food allergies, diabetes, and other such matters, but other than the Celiac's nothing else is wrong with me. I see a therapist, he doesn't think I am depressed...I don't know what else to do or what else to ask the doctors to look at!!

I have missed so much work, and although I am covered under FMLA, I am taking this time unpaid. The smallest amount of stress causes cramping stomach pain....can anyone help, can anyone relate? Is this just normal Celiac's??? Help, I am at the end of my rope and the knot is coming untied!!

My roomie has had similar issues--as I have too in the early stages especially. What we had to do was to figure out what our other food sensitivities were. You can't just get tested for this. You have to figure this out yourself.

Go on a simple elimination diet. Make a food diary and notice when you get messed up. When one has celiac, it is very likely one also gets leaky gut syndrome due to the damaged villi, esp. at first. Thus its important to remove common allergens like potatoes/tomatoes/peppers, nuts, milk products (though some can handle plain organic yogurt), soy, beans, and often some of the other grains -- esp. millet, buckwheat and sometimes corn and//or rice--as well as a multitude of pre-prepared foods and sugars of all kinds.

After you have been off these things and feel better, slowly add one thing at a time and see how you feel. Take your pulse and see if that is a factor as well as notice how you feel--and write it down. Obviously avoid those things that mess you up. In time you might be able to tolerate some of them, but it often does take time.

Now you say what to eat?? Its easy enough to prepare your own simple foods like green vegetables with squash and roots (though not potatoes!). Initially after you feel better add chicken or fish or some other easy to digest protein and see how you do. With the protein you might need to take pancreatic enzymes. You might also want to consider taking bromelain/papain or simple plant enzymes to help your digestion.

Marshmallow root and/or slippery elm can also be a great help by soothing and healing the intestines--either as capsules or as a gruel.

Its a bit of trouble, but not nearly as bad as feeling awful all the time. Good luck!

Bea

PS--a bit of advice--the more nearly you eat whole foods rather than processed ones and eat less grains overall, the more likely you will feel better faster and longer. Its also great for one's health in general. This is after all more nearly like most people ate thousands of years ago--which is what our bodies are adapted for--rather than the current additive, starch and sugar laden diet that is now so popular.

Ahorsesoul Enthusiast

I agree about the food journal. Also start double checking everything that goes into your mouth. It really sounds like cross contamination to me. You shouldn't feel this terrible.

My dd was having problems for awhile. We finally figured out she was drinking root beer at work that was not gluten free. So it could be something that you would not even consider has gluten hidden in it (and shouldn't!).

When you first went gluten-free did you cut out dairy and soy? If not, your intestines may not have healed well enough for you to feel better.

Somethings to consider:

I have to use gluten free personal products so you might want to check your toothpaste and such. Is your kitchen gluten-free? Are you eating in restaurants that may not really be serving gluten-free items? I will get sick from one tiny crumb of toast hiding in the butter. Are you feeding animals glutened food? Did you stop using things in your kitchen that might have hidden gluten: wooden items, plastic items, toxic toaster/blender and coated pots and pans? Do you chew gum or use breath mints. Are you kissing someone who isn't gluten free? Some people can't do this unless the other person has washed and brushed. Maybe it a combination of foods eaten together, here is where your food journal would help you see a pattern. Are your medications all gluten free?

I know you can find the cause for your distress! We are here to help you.

Archived

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

  • 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 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

    5. - trents replied to Jane07's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free Yogurt suggest

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,366
    • Most Online (within 30 mins)
      7,748

    caroljben
    Newest Member
    caroljben
    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
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
    • trents
      I would not think store bought yogurt would contain gluten unless it possibly could be through an added flavoring or coloring ingredient. Otherwise, it should be naturally gluten free.  Keep in mind that some companies are capitalizing on people's fears and ignorance (nothing personal intended) by labeling foods "gluten free" that are just that way by the nature of what they are. They are hoping to create a marketing edge over their competitors by adding "gluten free" because they know it may catch attention of those new to the celiac/gluten sensitivity experience without having to cost them anything in the way of changing their manufacturing process or doing testing.
×
×
  • 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.