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

I Want A New Body!


TrillumHunter

Recommended Posts

TrillumHunter Enthusiast

I'm so aggravated this morning. I've been sick the last week with what I thought was a cold I couldn't shake. But the last three days my body temp, pulse and BP has been low. And, I'm feeling that deep awful fatigue again. I had been feeling much better after a series of iv iron. I was fine, just finishing up the second series and, WHAM!, all over again I'm sick. The dr thinks now my thyroid may be involved in the autoimmune process. She won't check that though because she's a hematologist. :angry: Really, I'm so over this. I get one thing fixed only to have something else crop up. What makes me incredibly angry is I was undiagnosed for so long! Surely, I wouldn't have all this trouble if my immune system hadn't been running amok for so long? But now, I get the joy of more testing, more researching and everything else that comes with it.

I've done well with the celiac diagnosis. Heck, I even have some plans to start a related business. But, I'm having trouble staying positive with all this other stuff piled on top of it. Am I never going to be well? I'd like to take a time machine back to when the first dr said it was, "probably nothing."

I'm a sad, discouraged celiac this am with more balls in the air than I think I can manage.

Where's the crying icon? :(


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



Celiac.com Sponsor (A8-M):



missy'smom Collaborator

(((HUGS to you))))

I'm there on and off lately too. Too many balls in the air fits me as well. I try to let things go but all the balls are things that I can't let go-just necessary stuff for myself or kiddo. For me, I get this way especially when I am fatigued(right now just from the total sum of what I need to manage). I've been crashing and burning every weekend lately. It doesn't help that things(cold, flu) are going around too. I haven't been really sick but a little extra something just topples the balance lately. I try to just rest alot and tell myself it's just the fatigue and I'll be better when I get rested up. After so many years though, I have little patience with fatigue or naps. I have so much catching up to do! I have other issues to pursue too and delayed appointments that I should make with various healthcare providers but I'm a bit burn out on doctors and researching so have put it aside for a while. There is a time for everything and that time will come sometime. Sorry-not great advice but that's where I'm at right now. You're not alone and I'm glad I'm not either.

OK another ((((HUG)))).

nasalady Contributor
The dr thinks now my thyroid may be involved in the autoimmune process. She won't check that though because she's a hematologist. :angry: Really, I'm so over this. I get one thing fixed only to have something else crop up. What makes me incredibly angry is I was undiagnosed for so long! Surely, I wouldn't have all this trouble if my immune system hadn't been running amok for so long? But now, I get the joy of more testing, more researching and everything else that comes with it.

I've done well with the celiac diagnosis. Heck, I even have some plans to start a related business. But, I'm having trouble staying positive with all this other stuff piled on top of it. Am I never going to be well? I'd like to take a time machine back to when the first dr said it was, "probably nothing."

I'm a sad, discouraged celiac this am with more balls in the air than I think I can manage.

Where's the crying icon? :(

I'm SO sorry that you're going through this....and boy, do I know where you're coming from!! All of the autoimmune diseases that I've developed over the years due to a lack of a diagnosis of celiac disease..... :(

Truthfully, I don't know if I'll ever be "well". I guess I've been just hoping to be significantly better. My Hashimoto's thyroiditis wasn't diagnosed until my thyroid was no longer functioning. It's basically dead. My autoimmune hepatitis wasn't diagnosed until Stage 2 liver damage (well, it could have been worse....Stage 4 is cirrhosis). I'm in a wheelchair because of rheumatoid arthritis and fibromyalgia.

However, the gluten free diet is supposed to help with the other autoimmune diseases. Some studies have shown that the anti-thyroid antibodies have significantly decreased on a gluten free diet, for example.

Also I'm starting to think I personally need to be on a stricter diet, such as the SCD so many are following on this site.

What has given me hope and motivation to stick with the diet, and even to consider a more restrictive regimen is the possibility of ALL of my conditions going into remission. Lots of people on this site have said that happened to them (gradually, over a year or two or even longer), and they were just as sick as I am now.

As Emily Dickinson once said,

Hope is the thing with feathers

That perches in the soul,

And sings the tune without the words,

And never stops at all......

Sorry I have nothing better to offer than this....I know it's sentimental! :)

(((hugs)))

JoAnn

jerseyangel Proficient

((((((hugs)))))))

I loved nasalady's poem. I like to say--hope is the feeling that the feeling you have isn't permanant......don't know who said it first, but I hope it brings a little smile to your day.

Take your time, and take care :)

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 catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

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

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

      My journey is it gluten or fiber?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

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

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

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

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

      My journey is it gluten or fiber?

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • 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
×
×
  • 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.