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

New Here!

Regan

By Regan
in Coping with Celiac Disease

Recommended Posts

Regan Newbie
Regan
Posted

Hello. I am new here. I just wanted to introduce myself so bare with me. My name is Regan and I am happily married and have two children and two step children. I have been gluten free since the middle of August. I have been sick pretty much all my life but no one ever figured out what was wrong with me. I had been diagnosed with everything from IBS< SPASTIC COLON<ULCERATIVE COLITIS>DEPRESSION>ADD>THYROID DISEASE>ETC cant tell u how much money I have

spent on DRs. I have had 5 colon surgeries and ended up with a colostomy last year due to a failed j-pouch.My husband was talkin to a co-worker telling him all about me and all the things that were wrong with me. I used to always say my life would be perfect if I didnt have to eat. Usually when I would eat, my stomach would bloat up, suffered all kinds of bowel symptoms. Hot flashes, ulcers, so much more. I couldnt lose weight no matter what I tried. (through research I fall into the obese celiac) .Well the co-worker said it sounded just like him and he had celiac. I researched it and went gluten free. And what a difference it has made right away all my symptoms cleared up. I starting losing weight and felt better than I have in over 12 years. I had surgery in October to reverse the colostomy. I am just thankful I found out the problem before my surgery. And when I had pre op labs done for the first time in 12 years ALL of my labs fell in the normal range. Thats another proof. My only problem has been eating. I hate to cook. But I am so happy to have found you guys. I have learned alot by reading the post. Hope to get to know you better. Regan

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

Regan,

Welcome to the board!!! We are so happy to have you here. This forum is the single handed best resource for learning about Celiac and gluten intolerance, and all that it really entails. Please feel free to ask any and all questions!!! We are happy to help and offer support.

Wow, you have had quite the story to get to where you are! One of the things that is so interesting is how gluten has been documented to affect us all so differently. However you got here, I am happy you are on the way to better health. Gluten is a crazy thing to some of us. As much as the medical field knows, there is a lot that they don't know.

I encourage you to read, read, read this board. There is so much information out there. And what you don't find by reading, post! Chime in anytime!

Good luck and let us know what we can do.

Laura

i canary Rookie
i canary
Posted

Welcome to the board Regan. Glad you found us.

lonewolf Collaborator
lonewolf
Posted

Welcome! I'm sorry you've had such a rough time of it, but glad you found some answers. Please stick around and feel free to ask questions. As for cooking, there are lots of good cooks here, so maybe you'll be inspired.

Canadian Karen Community Regular
Canadian Karen
Posted

Hi Regan! I'm glad you found us too!

You certainly have been through the ringer before finally discovering the source of your problems. Unfortunately, that is an all too familiar occurrence, as you will discover by reading posts on here. The average time from onset of symptoms to finally a proper celiac diagnosis is 11 years! Hopefully, that will soon change as celiac is brought more and more onto the radar screens of the doctors out there......

Any questions you have, don't hesitate to ask away!

Karen

kevsmom Contributor
kevsmom
Posted

Hi Regan!

I have been gluten free for 1 1/2 years. If it wasn't for this board, I could have never done it. Everyone here is so helpful. We've all been through some of the same issues, so it's a great place to come for support.

Some of the things that I've learned here I would have never thought of on my own. I have learned to check with manufacturers on products that I am not sure about, be careful with personal hygiene products like soap, shampoo and lotions, and to wash my hands after feeding the dog.

I have found that if I have any questions, someone always knows the answer, or will help me find it out.

I'm glad you took the time to introduce yourself. I know that can take a lot of courage. Good luck to you.... and keep reading. :)

Cindy

debmidge Rising Star
debmidge
Posted

Welcome to our "place." Great to have a newbie. You'll find a lot of good information and good conversation and food discussion and all those good things to help you.

One of the board members has a "newbie" packet. I think it's NINI.

Hope to see you on board again.

D.

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

Celiac.com Sponsor (A8-M):


Nooner Newbie
Nooner
Posted

Welcome, Regan!

I'm glad you found this message board. It has helped me immensely, and I'm sure it will help you. I've been gluten free since August, and I'm still learning, too. There are lots of good, easy recipes in the cooking tips section to help you out with gluten free cooking. It's a lot easier to get excited about food and cooking when it no longer hurts to eat! :)

Li

daffadilly Apprentice
daffadilly
Posted

welcome to the group. So happy you found out your problem!!!

SchnauzerMom Rookie
SchnauzerMom
Posted

Welcome! I'm glad you decided to join us. I and my husband have been gluten free since the middle of October. Not very long but we both can tell the difference. This place has been very helpful, loads of info.

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.