• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:

    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:

       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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

Rate this topic

Recommended Posts

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??

Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

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.


Share this post

Link to post
Share on other sites

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.

Share this post

Link to post
Share on other sites

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.

Share this post

Link to post
Share on other sites

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.

Share this post

Link to post
Share on other sites
Ads by Google:

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!

Share this post

Link to post
Share on other sites

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.

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • Lex_ I agree with Ennis_Tx. You need to take some Magnesium.  It works best as a Magnesium Citrate or Magnesium Glycinate. Magnesium Citrate are easiest to find. Take it 2/day for the first couple weeks to see how much more energy you have. Then you can take it with each meal or 2/day and one hour before bedtime if it is not convenient to take it at work. If it is working you (right form of as a Magnesium Citrate or Glycinate) you will will experience vivid dreams. And wake up with enough energy to take on the day. **** this is not medical advice but it really helped my chronic fatigue symptom's. It is good for leg cramps too also known as charley horse's. posterboy,
    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
  • Upcoming Events