Gluten / Wheat – Just When I Thought I Was Out…

It has been a long time since I last posted on gluten. I thought the topic was finished for me, but unfortunately, it is not. I need to return. Or like the quote from The Godfather 3 said:

Just when I thought I was out, they pull me back in.

Godfather 3 quote

In December 2016, I posted Gluten / Wheat – The Final Chapter. Read the full post for my experience on this topic.

The short version is that after gradually reintroducing wheat into my diet after 5 years of being gluten-free, I felt fine. The only explanation that made sense to me was that I had cured myself, but I was even skeptical of that response.

I was guessing. All I knew was I felt much better eating wheat products than I did when I started the journey. And since resiliency (both health and cultural) were important to me, I didn’t question the positive turn of events.

Last month, after many years of avoiding doctors (except for gym injuries), I got some blood work done. I was feeling very tired and having some digestive issues. These changes were gradual. They happened over the course of a year or two. You may recall my post about switching to cold brew coffee to help with stomach issues. Eventually, that trick stopped working as well.

What did I learn from the doctor? Two things:

  1. My iron levels were low. I had just donated blood the week before, so this did not concern me. But I have decided to stop donating for now. My 5-gallon pin will need to wait.
  2. I tested positive for Celiac. Not a little. But a lot. My Tissue Transglutaminase Antibody IGA was elevated at a level of 76.77 which is a strong positive with a normal range of 0-20 units.

I did not see this coming.

I looked to see if this test was accurate and all I found were cases of False Negatives, meaning true Celiacs that tested inside the Normal range. I didn’t see cases, like mine, where the results were “strong positive” that were really fine.

A family member told me that she saw a TV show where people that gave up Gluten for long periods of time can lose their ability to process it once it gets reintroduced. The theory makes sense, but my search skills failed to find any support for that explanation.

I’ve now been almost 4 weeks without any Gluten. I’ve also stopped consuming secondary grains (non-gluten grains suck as buckwheat, brown rice, quinoa) for now as there are bloggers that advise this could accelerate the healing. Is it true? Not a clue. What I do know is that I would much rather test ideas that are subtractive (removing items from a diet) than additive (adding medicines).

The Gluten landscape online is more confusing than ever. You don’t know who to trust. According to some sources, I may not feel any different for 3 or more months. Fortunately for me, I have amazing dietary skills. I know how to follow a restrictive diet, be it vegetarian, Paleo, or Peasant.

If you have any advice or experience on this topic, drop me a comment. I have started supplementing L-Glutamine, as I’ve seen that tip repeated a few times.

13 Comments

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  1. I agree that the info scene is chaotic and unhelpful for the newly diagnosed. My spouse is a celiac. He’s basically healthy now, but is occasionally turned away for blood donation. Do you have first degree relatives that should also be tested? I would prefer to discuss this with you by email as this comment box feels very cramped. What do you mean by “secondary” grain? I was told (and it held true for my spouse) that you need about a year per decade of missed diagnosis. It sounds like they caught this fast and you can expect to improve quickly given the quality of your diet. Gluten Free Watch Dog tests products and works with the FDA on enforcement of the new gluten free rules in restaurants, etc. Some of the tests are for processed “foods” that wouldn’t interest you at all, and some are “peasant” foods like lentils, oats, coffee. I do not remember if you eat dairy? Feel free to contact me.

  2. You may find some interesting ideas in John Douillard’s book Eat Wheat. https://lifespa.com/why-how-when-to-eat-wheat/

    Essentially, he advocates strengthening the digestive system and eating wheat only periodically.

    Best of luck.

  3. @GFWatchDogFan – I updated the post to be more clear. Secondary grains are the non-gluten grains suck as buckwheat, brown rice, quinoa. Not sure where I first read the term secondary.

    I have no relatives with known issues.

    Now I am consuming organic lentils. I stopped consuming all oats including organic steel-cut for now. I hope to bring those back at some point.

    I’m cool with dairy. I’ve removed and reintroduced a few times just to be certain. I always feel great with dairy. My primary source is yogurt. I don’t drink milk.

    My email is [email protected]. Earlier this year I reduced my meat and dairy intake as a test (inspired by smart vegans), but I put that project on hold for now, while I replace grains.

    Thank you.

    @Thomas – I watched his video. It makes total sense. I have to think that whole grains soaked and cooked properly are good for health. Maybe not everybody. Maybe not me right now. But at some point. I will check out his book. Thanks.

  4. GlutenFreeWatchDogFan

    Sep 24, 2019 — 4:42 pm

    I wasn’t clear either. Your first degree relatives should be tested. They could easily have intestinal damage without symptoms. “If you have a close relative who has been diagnosed with celiac disease, you’ll most likely need to be tested as well. That’s because celiac disease is a genetic condition that runs in families.

    In families with at least one person who has been diagnosed with celiac, so-called first-degree relatives—parents, children, and siblings—carry at least a one-in-22 chance of also having the condition. So-called second-degree relatives (aunts, uncles, nieces, nephews, grandparents, grandchildren or half-siblings) carry at least a one-in-39 chance of having celiac disease.

    Some studies have shown even higher odds: In one study, for example, 12% of first-degree relatives (that’s one in every eight relatives) showed the characteristic intestinal damage known as villous atrophy, which means they had celiac disease.”

  5. @GlutenFreeWatchDogFan – Interesting. I’ll pass this info to my family. Thank you.

  6. You probably have considered this, but it might help to do a genomic kit such as 23andMe or Helix. There is gene, TCF7L2, which has allele variants that usually mark true gluten intolerance.

  7. @John – My 23andMe says this:

    0 variants detected in the HLA-DQA1 and HLA-DQB1 genes

    But I did not know about the TCF7L2, until you posted.

    After reading this page: https://www.geneticlifehacks.com/tcf7l2/ I pulled that data.

    (rs7903146)
    Variants = C or T
    Genotype = C / C

    (rs12255372)
    Variants = G or T
    Genotype = G / G

    (rs4506565)
    Variants = A or T
    Genotype = A / A

    If I’m looking at the Genotype score, I appear Normal on all 3. If I should be looking at Variants, I’m not sure.

  8. I have a glucose tolerance report from Helix.com that looks at rs2187668

    and says CC =unlikely to be gluten intolerant (but the CT or TT IS associated with but not guaranteed to be gluten intolerant.

  9. oh I just saw that SNP rs2187668 is a tag SNP for the HLA-DRB1*0301 allele, which you’ve already checked

  10. I think perhaps the lowering of fat too much could have a role to play here in the deterioration of your digestive system. Fat plays a specific role in keeping the junctions in the stomach tight. I could be way out with this but something to consider after I noticed that coffee also stopped working for me and I got other digestive issues on a low fat/peasant diet.

  11. My digestion has been getting worse and worse in the last few years. I’ve come to realize that starch was the problem. I can eat white rice and sourdough bread but I have big issues with potatoes, 100% rye bread, and beans (even soaked). I also have minor issues with other grains and even bananas.

    And I feel like a restrictive diet just made things worse. Recently I have read a lot about the gut microbiome, prebiotic, probiotic, and fibers. I started to test which foods I could tolerate enough to start making my gut better.

    I have been eating these foods regularly lately: miso, apples, cabbage, almonds, dark chocolate, raw blue cheese. All organic. In just a couple of weeks I was able to improve my digestion of starch, as long as it is occasional. My chronic fatigue has diminished quite drastically too.

    You inspired me to eat more fiber but as I don’t seem to digest foods high in insoluble fiber I turned on foods that have more soluble fibers. Your gut microbiome is definitely different than mine because you seem fine on potatoes and beans but maybe foods rich in specific prebiotic or probiotic could help you as it helped me.

  12. @Andew & @Nicolas – These are great ideas.

    Maybe the potatoes or beans might be an issue. I don’t think so, but at this stage, I need to explore all ideas.

    With the potatoes, I went from very high use to much lower and the symptoms were worse on lower. But that could just be a coincidence.

    I like the idea of eating: miso, apples, cabbage, almonds, dark chocolate, raw blue cheese. I already get the apples, so I’ll add these to my diet.

    I will be upping my fat as well, mostly because those replaced grains will likely come from fatter foods.

    thanks

  13. @All – Speaking on cabbage healing, the latest Vegetable Police video released this morning mentioned green cabbage for healing (at 7:10).

    https://www.youtube.com/watch?v=NVlCRmTjpQM

    This guy is a hoot. I love his sense of humor.

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