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 Just Want Some Virtual Hugs


aquaholical

Recommended Posts

aquaholical Apprentice

I have Lyme Disease and the Celiac symptoms started last September. Officially diagnosed Celiac end of this last March. The last 6 months have been a blur of unbearable pain. As we all well know, going completely gluten free has a steep learning curve and I feel like I am always either accidentally glutening myself or having a lyme flare-up. Always in such debilitating pain and it's starting to get to me. So difficult to cook for/take care of yourself when you're in crippling pain. Trying to decide if I want to take some time off work. Luckily, I have a very understanding/supportive job & co-workers and short term disability available. It's looking more appealing each day, esp on ones like today when I'm incapable anything other than lying in bed..

I just want some hugs.

<3


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



Celiac.com Sponsor (A8-M):



Oscar Apprentice

{{{Hug}}} {{{Hug}}} {{{Hug}}} :wub:

See, I'm not really such a grouch after all. ;)

psawyer Proficient

During my journey through celiac hell, which lasted about five years, I had many days like that. I don't share the Lyme issue, so my experience may not be the same as yours. The descent took several years; the rise didn't happen overnight. Although I saw some improvement quickly, it was about four months before I felt normal, and I still had some symptoms for another few months. Coming up on twelve years gluten-free, I have never felt better!

Oh, and you asked for ((((HUGS)))) - there you go!

cahill Collaborator

((((HUGS))))

alex11602 Collaborator

(((((((((((HUGS)))))))))))

aquaholical Apprentice

Thank you!!!! {{{{{{HUGS BACK AT YA}}}}}

squirmingitch Veteran

Here come some more (((((HUGS)))))!


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



Celiac.com Sponsor (A8-M):



beachbirdie Contributor

I have Lyme Disease and the Celiac symptoms started last September. Officially diagnosed Celiac end of this last March. The last 6 months have been a blur of unbearable pain. As we all well know, going completely gluten free has a steep learning curve and I feel like I am always either accidentally glutening myself or having a lyme flare-up. Always in such debilitating pain and it's starting to get to me. So difficult to cook for/take care of yourself when you're in crippling pain. Trying to decide if I want to take some time off work. Luckily, I have a very understanding/supportive job & co-workers and short term disability available. It's looking more appealing each day, esp on ones like today when I'm incapable anything other than lying in bed..

I just want some hugs.

<3

Lyme is no fun. You have a double-barreled challenge going on right now.

{{{{{{{{{HUGS}}}}}}}}}

MitziG Enthusiast

Many hugs to you! If you have the benefit, take advantage of that. Rest and reducing stress does much good towards helping your body recover!

farmer jennings Newbie

Many hugs from us here including my silkie chickens- great snugglers. I know what it is like to have multiple problems. Remember we are all here to support you. I will keep prayers going for you. God Bless!!!

dani nero Community Regular

*Really giant big fat hug* :-D

jeanzdyn Apprentice

(((HUGS))) for you aquaholical.

I really feel bad for those with celiac disease who have other afflictions as well --makes it so much tougher.

And I am greatful that I have not been terribly sick. I have had symptoms that can be attributed to celiac disease since about 1977. I did a lot of research on my own to find 'cures' for various ailments, or, if not cures, then relief in some form. The result was that, long before I was diagnosed with celiac disease, I had eliminated many foods from my diet. So that part has been easier for me.

Anyway, I feel for you! more (((HUGS))) to you.

bartfull Rising Star

Having to deal with constant pain while you are going through this is almost too much for anyone to deal with. Yet you are doing it. You must be a very strong person, and are to be admired for still working. If you think taking time off would help, do it. If you think continuing to work will keep your mind occupied so you have something else to think about besides the pain, do that.

But in the meantime, here's a great big (((((HUG))))) from me, and one from my kitty, Grommit (((((PURR)))))

JNBunnie1 Community Regular

But in the meantime, here's a great big (((((HUG))))) from me, and one from my kitty, Grommit (((((PURR)))))

This is a great idea! Virtual hugs for everyone!!!

Also, do you have any friends with gentle pets? Pet hugs work really good. Also, a Netflix subscription! Lots of comedy that will at least make you laugh, which is very good for your hugs needs!

Bubba's Mom Enthusiast

Lyme disease AND Celiac? :blink:

I don't know how you hold it together!

(((HUGS)))

squirmingitch Veteran

Lyme disease AND Celiac? :blink:

I don't know how you hold it together!

(((HUGS)))

Makes the rest of us look like wusses doesn't it?unsure.gif

jigsawfallingintoplace Newbie

Awwww (((hugs))

i have just come out of a bad glutening after being symptom free for just over 2 months. Its a rocky road that is for sure but someone once saod to me that 'the most difficult paths lead to the most wonderful views'

You are right to feel low - pain in crippling and takes over every waking moment when you are poorly so be gentle and kind to yourself and hold on to the fact that you will come through this and get even stronger. and in the meantime keep coming back here where there is a lot of love and understanding for you sweetie - you are work in progress and you will get there - do whatever it takes to nurture your health and aid your recovery xx

cait Apprentice

Right there with you. Coming up on 11 years with Lyme. Recently determined it is still active infection, but no good way of treating it since I didn't really respond to years of antibiotics and other fun treatment. Continually adjusting my diet to see if I can get anywhere near how I felt right after going gluten-free. No luck. Exhausted, so exhausted. Pain. Can't keep up with my life. Don't want this to be my life. Don't know what to do.

I feel your pain. Big hugs.

mamaupupup Contributor

Hugs Hugs Hugs!

  • 11 months later...
Loey Rising Star

Lyme is no fun. You have a double-barreled challenge going on right now.

 

{{{{{{{{{HUGS}}}}}}}}}

 

 

Sending lots of healing (((hugs))))

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.