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

Got The Thumbs Up From Doc


JBaby

Recommended Posts

JBaby Enthusiast

Based on 3 week diet experiment, my several visits to her over 2 yrs with no answers vs symptoms that came back when off diet, she feels I have celiac disease. We did blood work anyway(celiac panel). Told me they may come back negative but that doesnt mean I dont have it, just means tests are not conclusive. Advised me to get a nutritionist to help me stay on diet.... which is incredibly hard to stay on diet.


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



Celiac.com Sponsor (A8-M):



zeta-lilly Apprentice

I'm sorry that you're having such a hard time! Look on the bright side, it could be much much worse! I'm allergic to close to 30 foods. My diet is so limited. Q-doba is a great place to get gluten free food. Wendy's chili and baked potatoes are also gluten free. You can make gluten free tacos at home. There are some decent gluten free breads out there. If you slather butter on them and grill them in a pan, you won't be able to tell much difference between a gluten free grilled cheese and a regular one. Van's waffles taste pretty close to regular waffles. Rice and corn chex are both gluten free. Amy's mac and cheese is exceptionally good. It's hard to get started because it's a change in your mind set, but I don't think it's that bad once you get used to it.

Amyleigh0007 Enthusiast

It sounds like your doctor is really on top of it. That's good. You are lucky. My main motivation to stay on the diet is my son. I must be a good example for him. It also helps me to think about how I will feel the next day if I consume gluten. I can't leave the house due to restroom issues and fatigue. Gluten just isn't worth it to me. What are your symptoms? If they are bad, that could be your motivation to stay on the diet. Also, family and friends will take your diagnosis more seriously if you don't cheat. It really isn't incredibly hard to stay on the diet. It gets easier. Good luck!

hez Enthusiast

I have two very strong reasons to stay on the gluten-free diet. My children and pain! I get very sick from cross contamination let alone a huge chunk of gluten. I stay sick for about 4 weeks. By the fourth week I am starting to feel better. Is eating gluten worth a month of my life? No. Plus there is a strong chance my kids will someday have celiac. I need to be the example, show them that my life is rich and full without gluten.

Find what motivates you and realize your health and life are worth a gluten-free diet.

Hez

ang1e0251 Contributor

It will help you to get into the mindset if you start very simply with your diet. Eat whole foods that you prepare yourself for awhile and let yourself adjust to shopping, cooking and eating in this simple way. When you feel you have it mastered, then add new foods one at a time every few days. That way you won't be overwhelmed in the market or the kitchen and you can plan ahead easily. When you are past the simple beginning stage and ready to add new foods, sit and write down the 10 most common meals you prepare. Then convert them to gluten-free. If this seems hard, come here for advice. Many of us have become a whiz at converting recipes and substituting.

It will get easier, I promise. It seems daunting to change the way you look at food but it is doable and the great benefit is the healthy way you will feel. It's no fun to live so sick that you can't remember what normal feels like!

tarnalberry Community Regular

It seems silly, but one thing that will make the gluten-free diet easier is not paying a whole lot of attention to those who think the diet is really hard. It's not hard, but it's a big, huge, gigantic *difference*. So, I would argue that it's not the diet that's hard, it's the change. If you just try to twist your current foods to not have gluten, but not otherwise change, you may find yourself frustrated. But, if you're willing to take a little more license with your notion of what makes a meal, then it can be easier.

For instance - sandwiches are made on bread, right? Yeah, but gluten free bread is expensive, and it takes a lot of trial and error to find one (store bought or homemade) that you like, so you get frustrated, "I can't have sandwiches!". Well, what if you don't use bread for a sandwich. Corn tortilla? Rice cake? Lettuce leaf? (And those are just ones I've done, there are all kinds of options out there.) It's a lot about creativity and a positive attitude towards unrestricting what labels are for food in the mind.

Of course, there is definitely a steep learning curve to the technical side. What ingredients indicate gluten? What companies label gluten ingredients? What ingredients do I have to call for? (Here's a hint - the less things you buy with ingredients, the less you have to ask these questions. ;) ) (Ooo... I think the heat wave is making me snarky... :P) Know that you'll make mistakes - we all do. Know that you'll make mistakes even after you think you're over the hump - we all do. But know that you *can*, with a lot of patience and practice, learn the nitty gritty details and minimize those mistakes.

LDJofDenver Apprentice

I agree with tarnalberry, it's really not all that hard.

The hardest thing is that gluten can be in things you'd just never suspect, like soy sauce, spices, licorice, ice cream. That and eating out.

It's a little bit of a learning curve at first, but within a couple months you'll have it down.

A couple months after my diagnosis I found these grocery guides and, man, they made a big difference.

They list mainstream products (Kraft, Heinz, Kroger, Hormel, etc.) by category (soups, chips, dressings, spaghetti sauce, etc.)

Gluten-Free Grocery Shopping Guides:

Open Original Shared Link

Open Original Shared Link

About $25 but sooooooooo worth it.

My only other tip is be aware that


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



Celiac.com Sponsor (A8-M):



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. - trents replied to Ginger38's topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Ginger38 posted a topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - Russ H commented on Scott Adams's article in Latest Research
      5

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

    4. - Russ H posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Coeliac UK Research Conference 2025

    5. - Rejoicephd replied to Rejoicephd's topic in Related Issues & Disorders
      5

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,374
    • Most Online (within 30 mins)
      7,748

    Lynt
    Newest Member
    Lynt
    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

    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
×
×
  • 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.