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glutenfreegal

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glutenfreegal Newbie
glutenfreegal
Posted

Hello! My name is Alicia in live in PA and I was recently diagnosed with Celiacs. I have been struggling for YEARS. I was admitted to the hospital several years ago for an 11 pound weight loss in 3 days due to severe diarrhea but was told I had a stomach bug. I have always been food sensative...in fact a doctor told my parents when I was 9 that it was red meat that was bothering my sensative belly...so I am now 33 and have not had a drop of red meat since age 9. About 1 year ago I got fed up and started my quest to feel better.

1 year later I am almost there. I have been gluten free for 13 days. For the first time in my life I went 2 days w/o going to the bathroom (ahem..#2)...I am not suffering from bloat...not so tired that I could fall asleep at the wheel....Each day I feel alittle better. I LOVE to cook so I have to redo my pantry a bit..lol. But that is ok!!!

So anyway...just want to say HI! ;)

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Lisa Mentor
Lisa
Posted

Hi Alicia and a BIG welcome. If we can help you in anyway...just let us know. ;)

glutenfreegal Newbie
glutenfreegal
Posted
  • Author
Hi Alicia and a BIG welcome. If we can help you in anyway...just let us know. ;)

Thanks! I am looking forward to meeting some people and hope to find a support group nearby...I kinda had a breakdown the other day when I couldnt enjoy dessert after Sunday dinner. So I think maybe I would benefit from some support!

Lisa Mentor
Lisa
Posted

There are defined stages of dealing with Celiac.

At first, I was confused and had to learn what Celiac Disease was after my diagnosis. Then, I felt a sense of relief that I did not have a life threatening disease.

And I remember standing in the middle of the isle in the grocery story and getting so angry with my eyes filling with tears.

The learning curve is very steep, but many, many good people here helped me make my way through this struggle.

There are many support groups around the country. What city are you near and I will pass on some support links. But, this is the best one around.

glutenfreegal Newbie
glutenfreegal
Posted
  • Author

I am only 40 minutes from Philly...Close to Conshohocken and Montgomeryville

lizard00 Enthusiast
lizard00
Posted

Welcome!

I had a breakdown over pizza... :lol: We've all been there, probably a couple of times. This place was a huge help for me. Glad you found us!!!

this is the best one around.

So very true! ;)

ranger Enthusiast
ranger
Posted

Hi Alicia, and welcome. This forum has literally saved my life. There is much good advice, humor, and most importantly, understanding and community. What other group of poeple could you freely talk about poo but us! I'm 9 months gluten free and soooo much better. Ask questions, even if they seem stupid. Someone here will have the answer. Good luck.

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  • Recent Activity

    1. knitty kitty
      - 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?

      @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...
    2. knitty kitty
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      My journey is it gluten or fiber?

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    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      results from 13 day gluten challenge - does this mean I can't have celiac?

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      results from 13 day gluten challenge - does this mean I can't have celiac?

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    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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      My journey is it gluten or fiber?

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  • Posts

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

      By catnapt · Posted

      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
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      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
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