Weird wheat re-exposure reactions

As the world of people who are wheat-free continues to grow, I am witnessing a range of weird re-exposure reactions when people, intentionally or inadvertently, get re-exposed.

Among the peculiar reactions:

Congestive heart failure–A woman with a clear-cut syndrome of wheat intolerance that was evidenced by diabetes, excessive expression of small LDL particles (around 2000 nmol/L at the start), high triglycerides, gastrointestinal distress, widespread joint pain, and a peripheral neuropathy (impaired coordination, reduced sensation to the legs), and negative blood markers for celiac disease, improved substantially across the entire collection of symptoms. She lost around 40 pounds of weight, reduced HbA1c substantially, dropped small LDL dramatically (to zero), triglycerides to double-digit values, with modest improvement in coordination and peripheral neuropathy, marked improvement in joint discomfort. With each re-exposure, e.g, a couple of bites of birthday cake at her grandson’s birthday party, she experienced water retention and congestive heart failure of 27-30 pounds but developing over 7 days. This happened 4-5 times with water retention developing over the precise same time course. On each occasion, she responded to diuretics, losing the 27-30 pounds of retained water, with no other cause identified (no change in left ventricular ejection fraction, no change in kidney status, no change in serum albumin or protein levels, no change in thyroid status, etc.).

Functional achalasia–A young man had been wheat-free for over one year inadvertently had wheat in the form of orzo, mistaking it for rice (since orzo is rice-shaped pasta). Within minutes, food became trapped in his esophagus, necessitating an endoscopy to extract the food. No pathologic findings were seen: no esophageal stricture, inflammation, ulcer, or tumor. There was also no evidence nor history to suggest eosinophilic esophagitis.

Delayed acute abdominal painWhile abdominal pain from wheat consumption is common, given the many gastrointestinal disruptive compounds in modern wheat (e.g., intact alpha gliadin molecules, gliadin-derived peptides, wheat germ agglutinin, glutenins, omega-gliadins, alpha amylase and trypsin inhibitors, etc.), it usually expresses itself as heartburn/acid reflux, cramping and bowel urgency of irritable bowel syndrome, or through the inflammatory conditions ulcerative colitis and Crohn’s disease.

A 50-some year old man with repeated and incapacitating bouts of mid-abdominal pain underwent repeated endoscopies, colonoscopies, multiple upper intestinal and stomach biopsies, barium swallows, gallbladder imaging, etc. with no explanation uncovered, including negative blood markers and biopsy for celiac disease. Various anti-anxiety and antidepressants were therefore prescribed by his gastroenterologists. At my repeated urgings, he finally eliminated all wheat from his diet with complete relief obtained. Occasional indulgences were followed by sudden excruciating abdominal pain, sufficient to double him over and prompt emergency room visits, again with no diagnosis made. He finally noticed that recurrences occurred 3 days after a wheat indulgence, even testing the proposition himself: As expected, 3 days later, he experienced acute, severe abdominal pain. He is now meticulously wheat-free with no pain whatsoever.

That’s just a sample. Making cause-effect associations for some of these less common wheat re-exposure reactions can be tricky, especially when there is a delay between exposure and reaction, such as the consistent 7-day delay of heart failure described in the first woman.

If you have observed unique wheat re-exposure reactions of any kind, inadvertent or intentional, please share your story!

This entry was posted in Re-exposure syndromes. Bookmark the permalink.

56 Responses to Weird wheat re-exposure reactions

  1. Karen says:

    Although I eat exclusively GF, not all in my family do. On Thanksgiving, I took the crescent rolls off the the baking pan and put then in a bread basket. I forgot to wash my hands and sat down to Thanksgiving dinner. Within 30 min, my stomach swelled, I had my back pain, massive fatigue and pain in my chest. The reaction to accidental ingestion is getting worse and worse. It continued yesterday with the massive headache and continued body pain, especially in my back and shoulders. I also have the ringing in my ears back. I have been GF since Jan 2013 and have felt SO MUCH BETTER! I hope this goes away soon! I guess I will be wearing gloves or having someone else deal with any gluten filled products in my home.

  2. Patrice says:

    I’m a little late to this post but I wanted to share. I am a breast feeding mother who has been gluten and dairy free since my daughter developed colic at 5 weeks of age. I was told to just wait it out but the thought of listening to her scream for hours on end every night for months was unacceptable. I did a trial of eliminating gluten and dairy and within 2 days the crying stopped. 8 months later, when I tried to reintroduce them, I suffered from crippling stomach pains and fatigue and diagnosed myself with an intolerance. Now, its been almost two years, and even trace amounts of gluten causes a predictable set of symptoms. Within minutes, I become severely nauseous and my normally quiescent breasts turn into a leaking mess. After that I feel euphoric and restless for about 24 hours. I tend to have diarrhea during that time as well. Unfortunately, I then crash under fatigue that will keep me in bed for at least 2 days while the entire time I feel as though I’ve swallowed a bag of nails that is slowly scraping its way through my intestines. For the whole 3 to 5 days it takes to feel better, I have extreme insomnia, excessive thirst and mood swings. The last time, my reaction was so bad I ended up spending the night in the ER. I will never voluntarily eat wheat again.

  3. Kim says:

    Has anyone gotten a yeast infection from eating wheat again?
    I have been wheat free for 2 months and decided to cheat and had 3 Krispy Kreme donuts. 2 Days later I have a rash on my arm, and I’m pretty sure it’s a yeast infection. My days of cheating are over!!

  4. Jess says:

    I am so glad I found this article. I will admit I am not always good at sticking to a particular diet or way of eating. Even though I found wheat-free easy to maintain with excellent results, I ‘fell off the wagon’ after about a month, indulging myself with crackers, cookies and gravy to ‘celebrate’ my impressive 15-lb weight loss. Three days later, I started having abdominal cramps in the car on the way home from work. Pretty soon I was doubled over with pain, being pretty much unable to do anything. The next morning I felt fine again. I am not sure I am willing to go through that again just to test the hypothesis, as the man in the article did. But it is pretty strong motivation to never ‘fall off the wagon’ again!

  5. Elaine says:

    I am in the questioning mode. I don’t think I have any symptoms from eating wheat or grains. I ate some every day (usually ww bread, sometimes homemade) but I am very curious about what I am reading. Do you feel “everyone” can benefit from going off wheat or is it just some people? Even though I don’t have any digestive problems, I do have a problem with Heberden nodes in my fingers (bony protrusions starting in my lower knuckles) – we’ve all seen this – eventually leading to crippled-looking hands. My aunt has this. Do you have any experience with any patients with this condition? There’s not a lot about it on the Internet. Any help would be appreciated.

  6. katie says:

    I was wheat-free from Jan 1, 2013 until Feb 14, 2013–I had lost 20 pounds and was also working out up to 30 mins 4x a week. When I fell off the wagon—Valentine’s Day–conferences until 8pm & then home to my dad’s birthday party–TONS of temptations that day…..I lost it after that & couldn’t get it back. Within weeks I was having terrible aches in my elbows. I’ve been to 2 doctors, had blood-tests done–all came back “normal” & went to pt for my elbow pain. I couldn’t even lift grocery bags or untwist the lid off of a jar. I have an appt with a rheumatoid dr. in a few weeks—but I think after reading your book I found my answer. I’ve been wheat-free for 4 days now and already the swelling has gone down—my elbows no longer ache—the bloating in my stomach is gone–my energy is restored and I’ve lost 4lbs. I cheated last night on New Year’s Eve when my cousin brought my favorite local pizza to our party—I ate half of a piece. I already know from experience that I am prone to go crazy on wheat when I cheat, for I LOVE donuts, bagels, crackers—you name it, I’ll eat it. It’s a new year and I plan on staying wheat-free. I found your inquiry VERY interesting about when an individual re-introduces wheat after being wheat-free. Thank you for this information.
    I have a 16 year old daughter who is experiencing major eating disorder problems—we’re at 3 dr appts a week.
    &
    we have a 2 year old PICKY eater—who just wants to eat carbs & a 4 year old daughter who will try almost any new food.
    Question: Should I be feeding all 3 children a wheat-free diet? The 2 yr old will not touch meat or vegetable (except avocado). The 16 year old is as picky as the 2 year old.

  7. katie says:

    I had more question: I have been craving chewing ice like CRAZY since summer. My teeth are really going to pay for it—that’s how much I chomp on it. Have you ever heard of such an outrageous craving? Could it be wheat-related?

    • Barbara in New Jersey says:

      Katie,

      Usually craving ice is a sign of iron deficiency anemia. Your blood test will show a low red blood count. The entire spectrum of B vitamins and iron supplementation usually remedies the problem.
      Check with your doctor for more information. This can be very serious, not trying to scare you, but ice chewing is “just the tip of the iceberg.” Most often it is remedied by taking the vitamins and iron, but it is worth exploring with your doctor to rule out any other underlying conditions.

      • katie says:

        Thank you–I’ve had a ton of blood work done recently and am having my annual blood draw next week so I will be sure to mention it. Ironically, the ice maker broke yesterday, which is a blessing in disguise. I really haven’t been craving it though since I eliminated wheat a few days ago, but was chomping it all day before wheat removal.

        • Lynsey says:

          Katie
          I experienced the same thing. For about a year I craved chewing ice. I then went to the doctor..for a different reason, because I was crazy tired, and it turned out that I was severely anemic. After a few iron infusions, the cravings went away. I happened to read something online about the connection between anemia and ice chewing and then it all made sense!