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

Sooo Frusterating!


Delta32

Recommended Posts

Delta32 Newbie

hey everyone....

I was diagnosed Celiac just under a year ago after becoming deathly ill... When I first went Gluten-free I added more dairy to my diet to try and gain weight, but I seemed to get even more sick... After a few months, I read about casein and tried to go casein free... So much has improved, but I just seem to always slip and make stupid mistakes that take me out of life for at least a few days.. On top of all the stress I have been going through with my body and this diet, I found out my girlfriend was cheating on me, and I cought her putting glutened seasonings in my food when she would cook so that I would get sick and not go find out what she was up to... On top of that, all this time I have been eating things that say dairy free, and lactose free, but they still have casein! Two nights ago I had some friends over and, for the first time in about a year, had some vodka... I know that alot of vodkas are gluten free, but I found that sky is not gluten free and now i'm realllly sick... I am soo frusterated with our condition and I am having such a hard time with it.. Along with all the other stress that I'v been under... I'm 25 and just feel like i'm never going to get a grip on this and live my life without sickness... I'm sick and tired of being sick and tired...

I have a quiestion.. I read that casein intolerance causes the same immune reaction as celiac, often triggering the nervous system.. The article I read stated that it causes the same igg iga reaction... Does anyone know if this is true, and if so, how do they determine celiac from casein intolerance?

Sorry, but i just have to vent today.. I try and talk to people, but no one understands what I have been going through...


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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

Wow...that's horrible....first off, your problems with dairy/casein/lactose, second your problems with your girlfriend, and third, the fact that rather than just try to cover it up, she actually tried to poison you! I don't really know anything about this casein thing...I've been staying dairy/lactose/casein limited...but not concerned to have some dairy slip in...just concerned with large amounts of it.

It's hard to find wheat-free/gluten-free/dairy-free/casein-free/lactose-free foods, but I've found one...and it's soy free....and it's the most delicious, realistic-tasting brownie I've ever had.....Foods By George makes this brownie....it's terrific because it is a friendly food for nearly everyone....and delicious. Technically, I only need to stay away from gluten, so I don't also have to be soy-free, dairy free, etc....but I eat it anyway, because although it's really good for those with lots of allergies or intollerances, the manufacturers didn't sacrifice taste in making it.

Are you lactose intollerant or just staying lactose/casein/dairy free to help your intestines in the healing process? If you aren't....then once you're back onto dairy and the like, try Foods By George's corn muffins....also amazingly realistic...but only wheat/gluten-free, so not good for those who need to watch dairy, as well.

Mainly, this post was to provide condolences for someone who is obviously going through a rough time. I consider it difficult to endure all the aspects of a Celiac and the gluten-free diet...and I'm a 13-year-old who doesn't need to worry about anyone sabotaging me (and actually have everyone around me on my side), and also a 13-year-old that doesn't need to deal with relationships besides those with family or basic friends....I, and most of us, have no idea.....good luck getting through all this.

-celiac3270

burdee Enthusiast

Hey celiac3270:

You may be 'only 13' but you are WISE beyond your years. The encouraging posts you write to people on this message board who are struggling with 'symptoms' and frustrations of sticking to the gluten-free diet make me wonder if you should consider becoming a counsellor/therapist. ;) You're a natural! :) Maybe all your experience with celiac disease has made you very empathetic to others who are still struggling or maybe you have a great supportive network of friends and family. Whatever the source of your inspiring, supportive posts, keep them coming! :D

BURDEE

celiac3270 Collaborator
Hey celiac3270:

You may be 'only 13' but you are WISE beyond your years. The encouraging posts you write to people on this message board who are struggling with 'symptoms' and frustrations of sticking to the gluten-free diet make me wonder if you should consider becoming a counsellor/therapist.  You're a natural!  Maybe all your experience with celiac disease has made you very empathetic to others who are still struggling or maybe you have a great supportive network of friends and family. Whatever the source of your inspiring, supportive posts, keep them coming! 

BURDEE

Thanks...I try to be helpful to others and appreciate your compliments :) . I think experience and a great family has helped me....I'll try to keep helping....

-celiac3270

Newbie Rookie

Hey Delta... man, that's harsh. Sorry to hear your girlfriend did that to you... but I can tell you for sure, anyone who does something like that to anyone... making you sick intentionally in order to cheat on you... that's LOWER THAN LOW!

ANYONE like that is not worth your time of day.

I know what you mean about getting down, and I come on the board to vent too because not a lot of people w/o celiac really understand. Anyways, just wanted to give you a word of encouragement. Hang in there, vent whenever you have to, and just keep on doing your best. I know what its like. I'm 20 and so around your age, so I do know the challenges. Good luck and I hope things get better for you.

Newbie

Guest aramgard

Hey Delta, I, too, got very sick trying Vodka. If you want a drink now and them try Bacardi Rum. When my husband and I want a drink now, we have that and it doesn't seem to bother me at all. Believe me I know how difficult it is to stay gluten free, I"ve been that way (almost) for three years), but it really is worth it. As for the girlfriend, dump her and go on with your life. I'll just bet there are plenty of women out there who would jump at the chance of a good relationship with a Celiac. My husband stays gluten free with me for 2 1/2 years and we've been together since 1956. Just look for a kind girl who can adapt to reality and don't look back. Your mistakes will become fewer and fewer and you will feel better after a couple of years. I wish you the best luck. Shirley in San Diego

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

      My journey is it gluten or fiber?

    2. - 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?

    3. - 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?

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

      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):
  • Upcoming Events

  • Posts

    • catnapt
      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
      @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. 
×
×
  • 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.