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

Dealing With Ups And Downs Of The Disease.


Nettie

Recommended Posts

Nettie Newbie

I sometimes get rather frustrated. I love food and well, as we all know, it doesn't love us. I have issues with not being able to eat normally and sometimes I get overwhelmed with it all. I have symptoms on a daily basis and afraid to eat anything because of the horrible symptoms I have. Please someone help me....


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

It seems like there are two issues here:

1) the emotional/psychological challenge of what it takes to eat gluten-free in a gluten-eating culture

2) you still don't feel well

Starting with 2)...

Are you completely gluten free? If not, that's probably why (but that's also something you already know). If you think you are, it's worth double checking EVERYTHING that makes contact with your mouth - that includes lipstick if you wear it or are every kissed by someone who does. If you've done that, it's worth checking into secondary food intolerances, like dairy or soy (or many others), that you may find you need to eliminate, or just reduce or avoid for a short time before reintroducing in smaller quantities.

Can you give us a little more information on what you eat, how confident you feel in the foods you're picking and in avoiding cross contamination, and your symptoms?

As for 1)

You don't have to give up your love for food just because you're on this diet. If you're just gluten free, there are only four items you have to avoid - wheat, barley, rye, and (depending on you) oats. Rather than thinking of it as what we are taking out, look at all the options you have! Out of every edible food on the planet, that leaves us with a lot of choices! There are still an awful lot of grains we can eat (amaranth, quinoa, rice, corn, buckwheat, millet, teff, sorgum - more that I'm sure I'm forgetting). There isn't a single fruit or vegetable denied to us (until you start talking about other food intolerances, but there is a MYRIAD of edible fruits and vegetables). And fruits and vegetables can make a huge variety of dishes - from root vegetables to leafy vegetables to tree fruits to berries... There is a wide variety of meat if you eat it. (I can get chicken, turkey, (other birds), pork, beef, buffalo, and lamb fresh at Whole Foods - ostrich and venison frozen, then there's specialty places that can get you other things as well). There's a cornucopia of fish, depending on where you live more or less of it available fresh. And then there are beans and legumes (so many varieties of beans and lentils) and nuts and seeds. And oils and herbs and seasonings and teas... (I could go on, but I think you get the idea. ;) )

It's really a change in mindset, but there's nothing wrong with that! Since this is something you need to do for your body, figure out the way to do it BEST! And TASTIEST! That may mean more cooking, or it might just mean getting really creative with using whole ingredients really easily so there isn't a lot of cooking to be done. Yes, eating out at random isn't the same. But that doesn't mean you can't explore food; you just are now exploring a different part of the gastronomic world! (And we're all here to help. And, yes, commiserate that sometimes, it really is overwhelming and annoying and aggravating to be "different". But - *shhhh* - we're all different from everyone else. :P:lol:)

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. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      1

      New issue

    2. - knitty kitty replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Blood Test for Celiac wheat type matters?

    3. - trents replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

    4. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

    5. - Caligirl57 replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,084
    • Most Online (within 30 mins)
      7,748

    BlueIcyRose
    Newest Member
    BlueIcyRose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jmartes71, Sorry you've been feeling so poorly.   Are you taking any medication to treat the SIBO?   Are you taking any Benfotiamine?  Benfotiamine will help get control of the SIBO.  Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks?  Carbon Monoxide poisoning can cause the same symptoms as the flu and glutening.  Doctors have to check venous blood (not arterial) for carbon monoxide.  Are other inhabitants sick, or just you?  Do they leave the house and get fresh air which relieves their symptoms?  
    • knitty kitty
      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States.   In European countries, different cooking methods and longer  fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat.  Gluten content can vary according to where the wheat was grown, growing conditions, when harvested, and local preference, so a blend of both hard and soft wheat is used to make a uniform product.   I moved around quite a bit as a child in a military family.  I had different reactions to gluten in different areas of the country every time we moved.  I believe some wheat breeds and blends are able to provoke a worse immune response than others.   Since European soft wheat doesn't contain as much gluten as American wheat, you may try increasing your intake of your soft wheat products.  A minimum of ten grams of gluten is required to get a sufficient immunological response so that the anti-gluten antibodies leave the intestines and enter the bloodstream where they can be measured by the tTg IgA test.  Your whole wheat bread may only have a gram of gluten per slice, so be prepared...  
    • trents
      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound is real. If I were you I would aim at cutting back in weekly increments for two weeks at a time rather than daily increments. So, for instance, if you have been taking 2x20mg per day, the first week cut that down to 2x20mg for six days and 1x20 mg for the other day. Do that for two weeks and then cut down to 2x20mg for five days and 1x20 for two days. On the third week, go 20x2 for four days and 20x1 for 3 days. Give yourself a week to adjust for the reduced dosage rather than reducing it more each week. I hope this makes sense. 
    • knitty kitty
      Talk to your doctor about switching to an antihistamine, and supplementing essential vitamins and minerals.  Dietary changes (low carb/paleo) may be beneficial for you.  Have you talked to a dietician or nutritionist about a nutrient dense gluten free diet?   It's harder to get all the vitamins needed from a gluten free diet.  Gluten containing products are required to be enriched or fortified with vitamins and minerals lost in processing.  Gluten free facsimile processed foods are not required to be enriched nor fortified.  So we have to buy our own vitamin supplements.   Glad to be of help.  Keep us posted on your progress!
    • Caligirl57
      I’m pretty sure they do. I have been on myfortic, tacrolimus since 2021 for my liver transplant and added prednisone after kidney transplant.  I’m going to try to cut back omeprazole to 20 mg a day and then after a week try to stop altogether. Thank you for your help.
×
×
  • 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.