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

3 Years Into gluten-free Diet And Tired Of Being Different

lloydke

By lloydke
in Coping with Celiac Disease

Recommended Posts

Gemini Experienced
Gemini
Posted

This hit so close to home for me. My grandfather died just like this. He had intestinal cancer and died with a bag of poop strapped to him. And it was his biggest fear because his father died like that too. He always said he didn't want to go out like his dad, and at only 52 years old, he did. Now I understand why he got this particular cancer, even though he had no clue, but I believe he had celiac disease, as did his father. My grandparents had 13 children, one of whom is my mother, she has celiac disease, I have celiac disease, and both of my kids have it too. I am trying desperately to get her 12 brothers and sisters and their children tested, but to no avail. I wonder how many of them will meet their graves way too early with a bag of poop strapped to them? I shudder at the thought. Sigh. :(

If we had a medical profession who did their jobs, and accepted that many foods are the root cause of many illnesses, this would not happen! Some people only believe it when the people in the white coats tell them so. That would be my family...... <_<

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

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

Probably would have a much better time anyway!

well, I think so, but I think I'm a pretty fun girl.... :lol:

tarnalberry Community Regular
tarnalberry
Posted

I think three years is probably around the time where you stop trying to fit in to the scene, realizing it's futile, and start trying to change the scene instead. Cook for other people, suggest the restaurants, or make suggestions for things to do that don't revolve around our national obsession over food food and more ***forsaken food. It's a rut that you're stuck in, along with most of the rest of the population. It's a deep rut, that's hard to pull out of. But you've got a lifetime of opportunity ahead to do it.

Duhlina Apprentice
Duhlina
Posted

I'm in upstate NY and you are always welcome to eat here, too.

I'm in Upstate NY too! Where are you? I'm about 10 minutes East of Albany.

IrishHeart Veteran
IrishHeart
Posted

I'm in Upstate NY too! Where are you? I'm about 10 minutes East of Albany.

COOL! I'm 45 mins. away.

Have you been to Sherry Lynn's gluten-free cafe yet?

So we do not highjack this thread, PM me and we can talk! :)

eeyorelvr Newbie
eeyorelvr
Posted

I have only been at this since October of 2011, but travel a lot mostly eating out, since i have been gluten free I have been on 4 major trips. I too love when the chef comes to my table to talk to me, what I think bugs me the most about it all is just how much I have to "think" about things, it almost makes my brain hurt :P I can't tell you how many times I say "I'm just going to hire a personal chef so I don't have to think about this so much.

IrishHeart Veteran
IrishHeart
Posted

I agree that the convenience factor is a big pain in the butt, :lol: but I eat well and I can cook and bake, so I do not have much of an issue with being gluten-free at all.

I DO have an issue with people who give ME grief because I have to be gluten-free because my life depends on it.

If a waiter rolls his eyes or makes a derogatory snort or wise-ass comment when I politely ask for a gluten-free menu, everyone with me freezes--there is an uptake of collective breaths and an unsaid "Uh-Oh, he's done it now!"--- and they wait for my "firm, quick but polite lecture" on celiac disease and why he needs to be a little more courteous to me and take me seriously.

Works every time. :)

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

Celiac.com Sponsor (A8-M):


melsmith13 Newbie
melsmith13
Posted

Glad I'm not the only one...I'm newly diagnosed (6 months) and trying to navigate the gluten-free world (sometimes successfully). Ever since the diagnosis I've had a feeling of anger just lurking below the surface. Now, I'm starting to develop other food sensitivities that I've never had! (normal, I read) Grrrrr!!!! I'm just pissed! sorry to sound so negative but it gets depressing, ya know?

kareng Grand Master
kareng
Posted

Glad I'm not the only one...I'm newly diagnosed (6 months) and trying to navigate the gluten-free world (sometimes successfully). Ever since the diagnosis I've had a feeling of anger just lurking below the surface. Now, I'm starting to develop other food sensitivities that I've never had! (normal, I read) Grrrrr!!!! I'm just pissed! sorry to sound so negative but it gets depressing, ya know?

You may have had those food sensitivities all along and the Celiac masked it. It's like someone hitting your foot with a mallet.....you don't even feel that paper cut on your finger anymore. :D

IrishHeart Veteran
IrishHeart
Posted

I was just starting to post as Karen did :) You had those food sensitivities, you just did not notice them as the gluten/celiac was the primary one. Now that you're starting to feel better off gluten, they are more noticeable. Secondary food intolerances often resolve. I got dairy back after 10 months (whoohoo)

Hang in there.

And, you will go through the phases of grieving...denial, anger, sadness, bargaining, and finally acceptance.

You're not alone. We all went through it.

I had some major anger issues about it for a while--because if I had known what I was dealing with 30 years ago, when I started displaying symptoms, my life would have been drastically different. I suffered major consequences as a result of long undiagnosed celiac. I am pretty pissed off about that, yes.

But I can't get too caught up in the "woe factor". Life is too short for that stuff. We could have a whole lot worse going on.

melsmith13 Newbie
melsmith13
Posted

I was just starting to post as Karen did :) You had those food sensitivities, you just did not notice them as the gluten/celiac was the primary one. Now that you're starting to feel better off gluten, they are more noticeable. Secondary food intolerances often resolve. I got dairy back after 10 months (whoohoo)

Hang in there.

And, you will go through the phases of grieving...denial, anger, sadness, bargaining, and finally acceptance.

You're not alone. We all went through it.

I had some major anger issues about it for a while--because if I had known what I was dealing with 30 years ago, when I started displaying symptoms, my life would have been drastically different. I suffered major consequences as a result of long undiagnosed celiac. I am pretty pissed off about that, yes.

But I can't get too caught up in the "woe factor". Life is too short for that stuff. We could have a whole lot worse going on.

That's exactly it: I'm going through the phases of grief! I'm through denial and now I'm in anger... Re: the food sensitivities, it's weird ...I practically lived on guacamole and now it causes me such pain it's unbearable. I keep a food journal and do the whole exclusion thing to determine what exactly is giving me problems and I now can not eat brussel sprouts or avocados. Previously I ate both with no issues.

  • 3 weeks later...
wrongwayroxy Newbie
wrongwayroxy
Posted

The BEST meals are made at home!! But I totally understand your frustration.. I have been gluten and dairy free for 2+ years now and have never really been tempted: 1. It changed my life so drastically. 2. The few times I have inadvertently digested it, I ended up soo sick. But I have to agree with you, the hardest thing is getting "some" people to understand. I have some dear friends that have numerous times invited me out to lunch. I accept only to find out they're going to ROUND TABLE PIZZA!! I politely bow out and I always get the same excuse, "Well, we thought you could eat at the SALAD BAR!" Never mind that the one thing I miss the most is pizza but I am really not going to take the time to explain cross contamination to them. The other person that used to give me the hardest time was my ex-husband, who used to yelled at me whenever we went out to dinner because he would get frustrated that I had to spend so much time working with the waitress trying to figure out what I could eat! Well, now I have an amazing boyfriend who happens to be a nurse and totally understands not only my dietary restrictions, but cross contamination and other limitations. But last week we were on vacation with some friends. We rented a condo together and did ALL our own cooking. A good friend of mine prepared the most amazing braised salmon I have ever tasted totally from scratch... It always take a little extra time to plan ahead for meals and there will always be situations when its best to just smile and say "No thank you!" and just go without.. But other than that I feel perfectly normal..

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. Scott Adams
      - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in ...
    2. Scott Adams
      - Scott Adams replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Low iron and vitamin d

      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also ...
    3. Scott Adams
      - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Healthy Gluten Free Foods low sugar that you found?

      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those...
    4. Scott Adams
      - Scott Adams replied to lizzie42's topic in Traveling with Celiac Disease
      1

      Trip to Anaheim/Disney

      This article is a few of years old, but my still be helpful.
    5. trents
      - trents commented on Scott Adams's article in Winter 2026 Issue
      14

      Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out

      This is likely dependent on the sensitivity of the individual celiac.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,242
    • Most Online (within 30 mins)
      7,748
    Maya Baum
    Newest Member
    Maya Baum
    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

    • Scott Adams
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Scott Adams · Posted

      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in foods. I encourage everyone here who is affected by celiac or gluten sensitivity to read the announcement and submit their own suggestions — real lived experience matters and can influence policy changes that benefit the whole community.
    • Scott Adams
      Low iron and vitamin d

      By Scott Adams · Posted

      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also commonly reported in celiac kids and can be related to slow healing, reflux, motility, or even low iron itself. It sounds like the supplements are clearly helping, which is reassuring, and ongoing monitoring with her doctor can help determine when (or if) doses can be reduced as absorption improves. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. This article has more info:    
    • Scott Adams
      Healthy Gluten Free Foods low sugar that you found?

      By Scott Adams · Posted

      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those with whole foods can help you feel more “normal” without triggering symptoms. Subscription boxes can be hit or miss, so checking labels carefully and using them as an occasional supplement—rather than a staple—often works best.
    • Scott Adams
      Trip to Anaheim/Disney

      By Scott Adams · Posted

      This article is a few of years old, but my still be helpful.  
    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
×
×
  • 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.