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

Scared And Need Support Please

ebrbetty

By ebrbetty
in Coping with Celiac Disease

Recommended Posts

marciab Enthusiast
marciab
Posted

Betty,

I completely understand how you feel. But, PLEASE DON'T CHEAT !!! You'll be giving up what you've accomplished.

I've been on this diet for 8 months now, but I cheated last Sunday and I am still regretting it. Now I have "D", horrible GAS and Bloating. Never again.

Have you considered limiting your ready made foods for awhile and seeing if that helps ? I've read a lot of posts here about contamination even though the label says gluten free.

I am on a very restrictive diet at this point too. No meats, dairy, soy, etc., so I understand how frustrating it is not to be able to eat what you want. But, it is worth it not to be in pain.

Hang in there ... Marcia

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

Celiac.com Sponsor (A8-M):


TCA Contributor
TCA
Posted

Bless your heart. I think we all know how you feel. My son had D last week again and I've been racking my brain to figure out why. I was taking out the recylcing and realized I had gotten the wrong box of Vann's Waffles and had fed them to him. They weren't gluten free. AAAAAAAARRRRRRRRRRRRRRGGGGGGGGGGHHHHHHHHHHH!!!!!! :angry: I was so angry with myself. I've been doing this for about 6 mos. and I make stupid mistakes all the time. Is it possible you got glutened accidentaly? Not that your mistakes would be stupid, that's just how I feel. :P

Also - go ahead and have that pizza, just make sure it's gluten-free!! I made one for lunch today on Chebe crusts and it was WONDERFUL. My MIL was here a couple weeks ago and I made it and she kept saying she couldn't believe how delish it was. Give it a try! I order them off of glutenfreemall.com

megsylvan2 Apprentice
megsylvan2
Posted

Hi Betty,

I'm new to this too, and I just wanted to second the suggestions to look for problems with other foods. Not only do I get bad pains from wheat & gluten, but I discovered that egg is a real problem food for me. It causes pains very similar to wheat/gluten. For me, all the food sensitivities seemed to kick in at the same time.

Have you tried doing an elimination diet to see what other foods might be bothering you? I did my own elimination diet to see what was causing me the problems. I cut back to just meats, fish, potatoes, rice, and fruits and vegetables. After doing that, I felt so much better. THen I started adding back in one new food at a time, eating it twice (if no problems the first time), and waiting at least 2 days to see if there were problems before trying a new food. (I'm sure there are directions online somewhere for how to do an elimination diet properly.) I eat lots of fruit smoothies that I make from frozen fruits and rice milk, and they seem to be very soothing.

Good luck to you. Hope you find the source of the problem and begin healing soon.

happygirl Collaborator
happygirl
Posted

girl, you are not the only one who cries over this. I cry way too often, usually after being "glutened" at a gluten free restaurant. Go figure.

I don't have a whole lot of advice, just to let you know that we really are all in this big Celiac boat together. Complete with lots of bathrooms. :) I'll be thinking of you!

Judyin Philly Enthusiast
Judyin Philly
Posted

lAURA--NOW THIS MUST BE PUT SOMEWHERE IN THE 'BEST QUOTES'

we really are all in this big Celiac boat together. Complete with lots of bathrooms :lol::lol::lol::lol::lol:

THAT WAS A GOOD ONE.

BETTY HOW ARE YOU FEELING TODAY? :huh: .

JUDY IN PHILLY

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. Rejoicephd
      - Rejoicephd posted a topic in Related Issues & Disorders
      0

      Basic metabolic panel results - more flags

      Hey all Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium - nearly too low potassium - nearly too low chloride - high CO2 - low anion gap This is now after being nearly gluten-free for over a year (although I admit I make...
    2. xxnonamexx
      - xxnonamexx posted a topic in Related Issues & Disorders
      0

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang...
    3. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold. Our bodies have difficulty absorbing and utilizing it. Only 30% is absorbed and less can be utilized. There's some question as to how well multivitamins...
    4. Scatterbrain
      - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      I am taking a multivitamin which is pretty bolstered with B’s. Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol. Started Creapure creatine monohydrate in June for athletic recovery and brain fog. I have been working with a Nutritionist along side my Dr. since February. My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t ...
    5. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies. It's worth talking to a dietician or nutritionist about. Did you get a Marsh score at your diagnosis? Was your tTg IgA level very high? These can indicate more intestinal damage and poorer absorption of nutrients. Are you eating...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,317
    • Most Online (within 30 mins)
      7,748
    RickT
    Newest Member
    RickT
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Basic metabolic panel results - more flags

      By Rejoicephd · Posted

      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

      By xxnonamexx · Posted

      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      Feel like I’m starting over

      By Scatterbrain · Posted

      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
×
×
  • 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.