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

Feeling Defeated

TinkerbellSwt

Recommended Posts

TinkerbellSwt Collaborator
TinkerbellSwt
Posted

I feel so defeated and alone with this disease right now. Just the simple things are no longer simple in my life. I feel like everything revolves around food. I cant go anywhere without first taking into consideration whether or not I can eat while there. I ran out of pancake mix this morning and to buy more I need like 5.00. Its so darn expensive. I know I dont have to have pancakes, but its nice on the weekends.

I just found my shampoo and conditioner have wheat in them. (I posted this on another thread too) So, I tried and ordered Purology online. Well dippy me, didnt find the ingredients list on the computer so I just ordered it and there is wheat in that too! I cant use the stuff bought in supermarkets, as I have naturally curly hair and it makes my curls look awful. I dont know what else to do.

anyone have any suggestions?

I feel so alone.

Tinkerbell

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

Celiac.com Sponsor (A8-M):


nettiebeads Apprentice
nettiebeads
Posted
I feel so defeated and alone with this disease right now. Just the simple things are no longer simple in my life. I feel like everything revolves around food. I cant go anywhere without first taking into consideration whether or not I can eat while there. I ran out of pancake mix this morning and to buy more I need like 5.00. Its so darn expensive. I know I dont have to have pancakes, but its nice on the weekends.

I just found my shampoo and conditioner have wheat in them. (I posted this on another thread too) So, I tried and ordered Purology online. Well dippy me, didnt find the ingredients list on the computer so I just ordered it and there is wheat in that too! I cant use the stuff bought in supermarkets, as I have naturally curly hair and it makes my curls look awful. I dont know what else to do.

anyone have any suggestions?

I feel so alone.

Tinkerbell

You are not alone. Sorry I can't help you with the shampoo issue - My hair is fine and limp. My daughter can sympathize with the curly hair, but she doesn't have celiac so she can use whatever. Yep, this disease is an aggravation. Sometimes you do want to be able to take a pill and make it all better. But it does force you to be creative. I make a pancake out of my various flours that I have on hand. It's just flours, baking soda, salt and sugar and then mix milk egg and oil in another bowl and add that to the flours until it's just barely thick enough to pour.

Hang in there. I thoroughly understand, but I prefer to look at it as taking a proactive stance on my health and life.

Annette

CMCM Rising Star
CMCM
Posted

I sympathize completely, and I felt the same way at first. But you lose your feeling of helplessness by being very proactive....get all the information you can to begin with. I went into a flurry of reading like crazy to just find out everything I could. I read about 5 books which really really gave me the information which in turn gave me the resolve to do this without fighting it. I posted this list of books elsewhere...if you can't find it, let me know and I'll post them again. Remember that KNOWLEDGE IS POWER, especially with celiac disease.

Second, convince yourself that your discouragement really is entirely of your own making and in your own head, you create it by choice, and you can just as well choose to take a different attitude. What I did was say to myself, "OK, I can no longer eat this or that, but I'm going to find some OTHER things I like instead....not exact subsitutes it most cases, but other things that I actually like quite well." For example, I found and tried the Kinnikinnick K-Too cookies, which are a fabulous replacement for Oreos and they taste so similar that they really do pass! I gave one to my husband just to test (I didn't tell him it wasn't a real Oreo) and he thought it was the real thing. OK...so now if I have an Oreo attack, (which is actually fairly RARE because they are full of sugar and I avoid stuff like that because I want to lose some pounds,) so with or without wheat, I wouldn't want to eat them very often. I'm not about to start eating them a lot just because they are gluten free...they certainly aren't SUGAR free!! But they are out there as an occasional treat.

I was a donut freak....that's a real deprivation for me because I always used to think the ONE sweet I could never do without was an occasional donut (notice I say "occasional"). Again, I tried and actually LIKED A LOT the Kinnikinnick donuts (both the maple and chocolate frosting ones). So I bought them (they are frozen), and on an occasion where I would like a donut they are there to thaw out and enjoy, and they really do satisfy my donut urges quite completely.

I have also limited my bread eating for a long time, but occasionally I want toast with breakfast. I've thus far tried and very much liked 2 different breads, also English muffins and hamburger buns (all Kinnikinnick, again!), and I liked them just fine. So these items are also in my freezer for when I want to indulge. But because I'm careful with sweets and starches, these items aren't a major part of my diet and wouldn't be anyway even if I were eating gluten things.

I've been making my usual recipes (spaghetti, for example) with the Tinkyada rice pastas....and GUESS WHAT....my family (who all can eat gluten at this point) didn't even realize they were something different, and they LIKED it. So there are a bunch of pasta recipes I can still make....although again, for weight loss issues I am going easy on pasta. But there is a happy substitute out there for the old wheat pasta if you get the right brands.

I guess what I'm trying to say is choose the positive path....after years (or a lifetime) of eating automatically and mindlessly whatever is out there, now you can choose to look at this as a somewhat adventurous search for new things that you have never tried before. I have been trying everything I can get my hands on....and with just a few exceptions I am totally pleased with these things I've tried. And my family goes right along with me as I cook all these gluten free things instead of wheat based things (I am NOT going to make 2 different meals!!!) and they LIKE them, and in some cases like them better. Nobody is feeling deprived in the least.

Ultimately....and this is how I choose to look at all this....overall the gluten free (and in my case, also casein free) diet is going to be much much better for my weight and my overall health. That's a good thing. Maybe all of us wouldn't have eaten quite as healthfully without celiac disease...but in the end, IT WILL REALLY BE BENEFICIAL FOR US, ESPECIALLY IN OLDER YEARS!!! We have been nudged into being better eaters as a result. That's very positive!

So point your brain into a positive direction and stay there. Eventually this will all become habit and it will be second nature and you won't be thinking about it much. That's really what happens, and it will be quicker and much more painless if you have the right attitude about things. Remember that attitude is one thing you have total, 100% control over at all time!

:)

TinkerbellSwt Collaborator
TinkerbellSwt
Posted
  • Author

Thank you for your responses. I do already feel a bit better about things. I will try new things. I might find something good for me in the process. I just got so frustrated. I think it just came to a head the other day. Thank you for the words of encouragement. I truly appreciate them. :)

pixiegirl Enthusiast
pixiegirl
Posted

I never really felt defeated or depressed when I first found out I had Celiac but it seemed like wheat was everywhere.... almost impossible to avoid. However I think when one is diagnosed with Celiac you should expect its going to take months, up to a year to really get it and get it all cleaned out of your house, etc.

I cut out the obvious forms of gluten right away (bead, pasta, cookies) but yes I found it was in shampoo and make up... I just looked at it (and still do) as a learning experience, when I find out that I'm using a product that has gluten in it, I just take it out of the mix and move on. If you plan in your head that its going to take a while and accept that, then when you do find a product you "thought" was ok and find it isn't, well I just move on. After a year and 7 months of Celiac I'm still learning.

Just don't beat yourself up, if you were trying something else new... golf, horseback riding, a new job, you'd never expect yourself to be perfect the first time out (or the first year out!) so give yourself the same leeway with Celiac. It really does get easier as you adjust.

Susan

sspitzer5 Apprentice
sspitzer5
Posted

Tinkerbell, you're definitely not alone. I have had those same feelings many times over the past year. I've been gluten free for a year. I didn't see too much improvement until I changed soap, my stupid shower soap had wheat in it. So all that time I tried so hard to watch what I ate and never thought about soap that was probably all over my hands, etc. It's really frustrating, but I agree with the others that it tends to get easier over time. I definitely have days where I don't even think about gluten and feel like a normal person again because I've got my eating options figured out. I went to a wedding shower yesterday and couldn't eat or drink anything there, but I wasn't very bummed about it. The cake held no appeal at all.

Anyway, hang in there, it'll get easier (maybe never easy, but certainly easier).

S

loraleena Contributor
loraleena
Posted

Try Giovanni it is gluten free, natural, and seems to work well with my naturally curly hair. Shakai works good also. You can buy them at Whole Foods.

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

Celiac.com Sponsor (A8-M):


Lollie Enthusiast
Lollie
Posted

I so sorry that you are feeling so bad! I went through that recently, but have somehow come out of it on top. I feel greatful to have a disease that is corrected with food, although I still have tinges when I see the Krispi Kreme or convinience foods I love, but know that I can't have. I just try to remember that I was beyond sick just 3 months ago. I try to remember that I am healthier now, and not just for my self, but for my family! I think it's completely normal to go through some kind of a mourning process with any major change in life, but know that it gets better, it won't last, and that at the end you will come out ahead!!!!

And by the way, I made pancakes for my family this weekend and made them from scratch- not a big deal, easy recipe, they all liked them and I did too! I'll pass on the recipe if you want it, it's better then having to depend on some mix.....

Lollie

TinkerbellSwt Collaborator
TinkerbellSwt
Posted
  • Author

yes Laura.. I would soo appreciate your pancake receipe. I still havent had them as I have to go to the health food store to get the mix. I would love a receipe to make out of just the flours. Thanks

Tinkerbell

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. 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...
    2. 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...
    3. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      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. ...
    4. 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?

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.
    5. 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?

      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 ...
  • 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
      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.  
    • 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. 
×
×
  • 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.