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

Indulge Me; What Was It Like To Be Gluten Free Back Then?


catsmeow

Recommended Posts

catsmeow Contributor

I was curious to hear your experiences of being gluten free prior to the explosion of gluten-free products. I arrived on the scene post explosion, and even though the transition was hard, I am positive that is wasn't even close to being as difficult as it was back then. My symptoms started in 1999, and reached full blown illness by 2002, but of course, it took till 2010 to get properly diagnosed. I ponder what it would have been like to be diagnosed right away.....back then..

I remember in the 90's, I had a problem with my water well. The well guy came to work on it. He was there for hours and I thought he must be getting hungry, so I offered this very thin, pale man some peanut butter crackers. He quickly and gruffly told me he had Celiac's disease and could not eat wheat, rye or barley for life. I remember being embarrassed for asking him he wanted crackers, and we said no more about the subject. Yet, I thought of him for the longest time because as a person who baked and cooked a lot, I understood the ramifications of what he had, even though I had never heard of it before that day, but the more I thought about it, the more I realized how tough his life must be. It's so ironic that several years later, I had become gluten intolerant with a wheat allergy to boot...and was in the same situation as the well guy.

.....so I ask again veterans, what was it like for you? How about you vets who have been at this for a lifetime? Do we have anyone who has been gluten free for 10, 20, 30, 40, 50, 60 years??


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

11 years. To me, the hardest part was that wheat didn't have to be listed until 2006, and very few companies listed ingredients online or had gluten-free lists online, so I spent much more time calling companies about ingredients. Virtually no restaurants where I live had heard of being gluten free. None of my friends knew what the heck I was talking about. I educated a lot of people.

Not only were there many fewer specialty items, but most didn't taste as good and "regular" grocery stores here carried almost none of them (I think Kroger had pasta), so you spent time trying to find natural foods stores or you HAD to order online.

richard

bartfull Rising Star

I'm fairly new at it, but my Mom was diagnosed back in 1985. Mom was always a phenomenal cook. When she was diagnosed her doctor told her, "You'll never be able to do it." (He was the only doctor, after years of Mom being sick, who even thought of cleiac, but that was the ONLY thing this jerk ever got right.)

My Dad had asthma and was allergic to preservatives in food so they already had an organic garden and Mom made EVERYTHING from scratch. It wasn't that hard for Mom. She even made her own condiments for Dad, and although she stopped making lazagna, she started making the best eggplant parm I ever tasted.

Mom never developed secondary intolerances so she made cornbread for herself (and the family). Other than that, she always used whole foods anyway.

The difficult part for Mom? When she would go to potlucks and only eat her own food. She would tell people about her celiac, and she would get remarks like, "That's ridiculous!" (I was there to hear that one and I wanted to deck that "lady"!) A lot of the women would say things like, "What's the matter, our food isn't good enough for you?" No matter what she said, none of them understood, and they were all already jealous because Mom was such a good cook. I wonder sometimes if any of those women remember how they treated Mom now that celiac is in the news and they know it's real. I wonder if they are sorry. I hope so.

catsmeow Contributor

Wow Richard, I never even thought about the whole labeling thing. That must have been so tough. I'm so glad that labeling is getting better, and there is more awareness, but still not a lot. People still think I mean glucose, and that I am diabetic...LOL

Bart, your poor mom. I would have wanted to deck someone who would dare say "that's ridiculous" How awful!!!! I just want to give your mama a hug. I had someone recently say behind my back "aint she a piece of work" in reference to my food issues.....sigh. That really hurt my feelings, especially coming from a know it all gluten free dairy free recipe blogger. Who, is just doing it because she believes it's healthier, but has no clue what it is like to really have a problem..I stopped feeling bad though when I realized that I have to consider the source. A know it all is a know it all, and you can't tell em' anything.

psawyer Proficient

I have been gluten-free for just over twelve years.

There have been major advances in label rules in that time, and many more specialty products have been introduced.

In 2000, there was no gluten-free beer at all. Gluten-free baked products could only be obtained in specialty stores. Today, they are in mainstream supermarkets. There are so many more of them, too.

You still have to read labels all the time, but the list of "may contain gluten" ingredients has shrunk so much. Wheat can no longer be concealed. Rye and oats never hid in the first place. The only pitfall left in the US is flavors that could (but really never do) contain malted barley. In Canada, barley can no longer be hidden--but foods made before August 4th may still be in stores with hidden barley.

Many companies will now fully disclose gluten by naming the grain source. These include (among others) Campbells, ConAgra, General Mills, Kraft, McCormick, and Unilever. These companies own other brands, but look for their name somewhere on the label. If you don't see a gluten grain named, there is no gluten in the product.

beachbirdie Contributor

I'm fairly new to gluten-free living, started exploring a little over a year ago. But one of my dearest friends from high school was diagnosed with celiac back in the days before there was readily available Internet. There was no "online" to order from, and very little available in the stores outside of the vacuum-packed Enjoy-type breads. gluten-free labeling didn't happen.

She ended up eating only fresh whole foods (sound familiar to anyone, LOL?) and not using packaged stuff for much of anything. It was hard work, but she did it!

It is so much easier now. Not perfect, but easier!

  • 2 weeks later...
catsmeow Contributor

Thank you for all the great responses. I sure learned a lot, and feel very fortunate to be gluten free in this day and age and thank those who came before me and paved the way.


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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Helen1984
    Newest Member
    Helen1984
    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
      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
×
×
  • 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.