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

Needing To Find Someone To Talk To.

Blessings

Recommended Posts

Blessings Explorer
Blessings
Posted

I just found out in March that I have celiacs and in April that I have crohns. Emotionally I'm holding on by a thread. Anyone out there that's gone through this, on the south end of Co Springs, willing to lend an ear. I need an understanding friend right now.

I am going to a series of stress management classes

lots of prayer

appointment with therapist in June

workout at gym

don't know anyone else with celiac

went to CSA vendor fair last month will try to go to the meeting in June

Normally I am a very even keeled person but this has thrown me for a loop.

Vicky

buildingblessings@msn.com

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

Celiac.com Sponsor (A8-M):


mammajamma Rookie
mammajamma
Posted

All I can tell you is... you are in the right place! I wish you luck dealing with all this...

AliB Enthusiast
AliB
Posted

You may undoubtedly find that dealing with the Celiac will also sort out the Crohn's, as it is almost certainly caused by the same thing. Gluten.

This is a great place to come and share experience, ask questions, vent and whatever you need. You can pretty much guarantee that what ever you are going through has been experienced in some form by others out there. We all support and encourage each other and it is a great help.

Even if you have no support or 'gluten-free compatriots' around you, there are loads of us here and you never know, you might just find a few local 'buddies' to pal up with through it too.

Bernadette Newbie
Bernadette
Posted

Celiac and Crohn's are completely linked and are often considered the "same" by many doctors- the reason why I say this is because my former co-workers tested negative for Celiac but was diagnosed with Crohn's disease and was told the treatment was a gluten free diet. One of my former doctor's thought I had Crohn's disease and told me to eat a gluten free diet and my new doctor strongly feels I have Celiac disease and has told me to eat a gluten free diet. I am currently awaiting the test results on the celiac disease. If you keep gluten out of your diet, both your Celiac and Crohn's disease will be managed appropriately. My doctor has even confirmed this as we spoke about this during my visit last week.

And, if you ever need to vent, just jump on this forum and let it out! My mother actually told me about this forum and I have learned so much and comforted to see that there are so many people that know how I feel.

Guest hightop girl
Guest hightop girl
Posted

I am in the colorado springs area, but at the north end of town. I don't have crohns, but I am new and can understand your need for some support. feel free to pm me so we can talk.

Sherry

ksymonds84 Enthusiast
ksymonds84
Posted
I just found out in March that I have celiacs and in April that I have crohns. Emotionally I'm holding on by a thread. Anyone out there that's gone through this, on the south end of Co Springs, willing to lend an ear. I need an understanding friend right now.

I am going to a series of stress management classes

lots of prayer

appointment with therapist in June

workout at gym

don't know anyone else with celiac

went to CSA vendor fair last month will try to go to the meeting in June

Normally I am a very even keeled person but this has thrown me for a loop.

Vicky

buildingblessings@msn.com

Hi Vicky,

I live in the south broadmoor bluff area. PM me anytime as well!

Chrissyb Enthusiast
Chrissyb
Posted

I live near the walmart on platte and only been dealing with celiac since november. I am hear to talk any time. I also have ms.

Chrissy

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

Celiac.com Sponsor (A8-M):


ksymonds84 Enthusiast
ksymonds84
Posted

I was reading in wednesday's food section of the gazette that the pikes peak celiac organization is going to be meeting once a month at a different restaurant. My paper got thrown away but my husband THINKS he remembers June 16th at Gertrude's. You can call Gertrude's to see what info they have on how to reserve etc. if any of you colorado springs gals want to attend Sounds like a nice way to get to know fellow CDers.

  • 2 weeks later...
Blessings Explorer
Blessings
Posted
  • Author

Hi Guys

Have you heard anything else about Gertrudes? As far as I know the CSA Meeting is on Sat, June 14 at 10 am, at the Holly Branch Library. Platte and Murry, at the NE corner shopping center. I am going to go if you want to meet up and go to Chipotle afterwards. I sent you a personal message if you want to get back with me.

Hope to meet you guys.

sickchick Community Regular
sickchick
Posted

Hang in there Sweetie... we're all here for you. My heart is breaking for you.

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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

      I don't know if I am getting sufficient Omega Threes. I read about phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    2. Scott Adams
      0

      Gluten-Free Cantonese Steamed Fish with Ginger, Scallions, and Sizzling Oil

    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue. I have eaten a supposedly high lectin diet (I say supposedly because lectin...
    4. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

      @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...
    5. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

      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. ...
  • 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):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @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
      My journey is it gluten or fiber?

      By knitty kitty · Posted

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

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
×
×
  • 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.