Why Did the Young Woman’s Heartburn Keep Getting Worse?

May 16, 2018 · 27 comments
Chelsea (Hillsborough, NC)
Come on this was so easy . classic symptoms. Once they ruled out pancreatitis what else could it be and it is not that rare or unusual a disease. The ER doctors just seem to not be very sharp anymore They just order the expensive CT and then send patients home with acid pills. Another example of really lousy medicine .
Louise (America)
I am not sure the whole story is known. Were the biopsies stained for Mast Cells? She may have Mast Cell Activation Syndrome. Because there is good and growing literature on how to treat this condition, the biopsy slides should be stained for Mast Cells. It can really matter for the patient's health and life.
Passion for Peaches (Left Coast)
Interesting story. Something is not clear in the telling, though. I’d like to know whether this woman ever consulted with her primary care provider on this recurring problem — when she wasn’t at a crisis point — and followed regular channels to see a gastroenterologist or other specialist. The way this is written, it sounds as if she repeatedly used the ER for care, and for her referrals. It can be a slow process making an appointment with your internist, only to be sent on to a specialist, but that’s how it’s supposed to be done. The ER should not be the go-to place for everything.
Malcolm (Boulder)
My guess is she had mild GI complaints (easily overlooked or explained away) until she had a major flare up. Our kid has EoE (eosinophilic esophagitis) and that went from an occasional stomachache to vomiting multiple times a day, food getting stuck in his esophagus and in constant pain over the course of a few weeks. We are lucky to have a great pediatrician and an EoE clinic at our local children’s hospital but it has been a long road to get him into remission. EGIDs can present very differently from person to person, treatment can vary greatly and a lot of MDs know very little little about them. It can literally take years for people to get a correct diagnosis and proper treatment.
Emily Kane (Juneau AK)
Detail: why did antibiotics make things worse? Because they trashed her already compromised microbiota. Please please be very cautious, and specific, with Abx prescription or if you are the patient realize that often conventionally thinking healthcare personnel really don’t have much else beyond steroids and antibiotics. Great for emergencies but never the answer for chronic or complex disease.
KJ (Tennessee)
Whatever field of medicine this woman chooses, her personal experiences will give her an insight into the misery undiagnosed or misdiagnosed illnesses can cause. I wish her well.
Kitty (NY)
#healthinsurance
Seth Kaplan (MA)
The first thought I had after reading the first few sentences was "allergy." There are three kinds of food allergies: food allergy, almost always caused by immunoglobulin E, which can be fatal (like peanut allergy), is an immune system response. Overactive immune systems produce cytokines, which cause runaway inflammation. Food sensitivities, all the ones not IgE-related, are a digestive system response. They often take a while to develop--hours as opposed to minutes--and they won't kill you, but they're no fun. Think of lactose intolerance, for example. Food intolerances occur immediately after eating something that your digestive system absolutely cannot accept. For example, MSG can within minutes cause the classic MSG reaction: Your head feels like 10 pounds of feathers in a five-pound bag. Or, if you have migraine, drinking beverages with high caffeine content, like one of those little energy boost bottles containing 400-500 mg of caffeine, can send you right to migraine. Other intolerance migraine triggers could be chocolate or fermented beverages and foods, like sauerkraut or live-culture yogurt. Interestingly, if you've had a reaction to the flu vaccine, it's probably because it activates your immune system, ostensibly to thwart flu invaders. But, one activated, it can remain so or become over-activated, which makes you feel very sick for weeks or more. Some people say, "The flu shot gave me the flu." What really happened is a case of immunoexcitotoxicity.
CJ (CT)
A very helpful and interesting article. Our intestines are complicated, plus with the changes to our food, air, water, and the high stress from modern life it's not so easy to stay healthy.
LivingWithInterest (Sacramento)
I am so glad this story had an ending where the patient survived to pursue a life and a medical career and I wish her the greatest success. The good news is she appears to have healthcare coverage. There doesn't seem to be enough curiosity on the part of physicians who are pressed under the general rule of 15-minutes per patient. A better statement might be that there isn't time to be curious. There's barely enough time to focus and consider the symptoms knowing there's 32-to-40 more scheduled patients ahead. I blame a system based on capitation and high on expectations of having quick discharges and not having "come-backs." There is no time to be curious. Additionally, curiosity is curtailed by insurance companies that continue to practice medicine and disapprove tests as uncovered just because it falls out of the realm of the ordinary. If I read the story correctly, what helped this patient was a moment of curiosity wherein one doctor considered an unusual option but was blocked when another (senior) doctor did not accept the unusual until (his) usual proved ineffective.
David Martin (Paris)
I never took antibiotics, but then one time a doctor gave me them for the flu (or maybe it was just a “winter cold”). Then I had stomach problems for about 4 years. Finally, after years, things went back to normal. I am not sure it was the antibiotics, but I would only take them again ... to save my life. Otherwise, no.
pak (The other side of the Columbia)
Next time take antibiotics when you have a bacterial infection, not a viral one like the flu or the common cold.
Mel Farrell (NY)
Born in the West of Ireland, 15 years on a farm living off everything we produced, including vegetables, fruit, eggs, dairy, and meat, none contaminated by any substance to increase yield, or change in the genetic makeup of anything which existed on that organic paradise. Couple that lifestyle with the absence of stress developed through association with the maddening crowd, and the only electronic device being a radio, and a well appointed local library, consequently those first 15 years were formative in a way that is nearly impossible in today's overcrowded, and GMO modified world. Now 68, having lived 53 years in the United States, I have had the opportunity to observe the lifestyle of tens of millions of urban dwellers, myself included, and can seriously conclude that the inescapable and deliberate contamination of everything we eat and drink, and thereafter the need to consume pharmaceutical products to alleviate the damage, and unwittingly adding to, and causing additional physical and mental health problems, is entirely the reason those who live here are nearly all unhealthy in one way or another, with obesity and it's associated results being a core problem. While such thinking may be said to be too generalized, as individual disease does infect, individually, from time to time, by and large the axiom "we are what we eat", holds true. Solutions ?? Not many, given the totality of the problem, yet if our life and the planet are to survive, we must get busy, now.
Mickeyd (NYC)
I was on your team until you said your enviro-medical theory is "entirely the reason." You seem to back up on that later when you admitted it may be over generalized. I'll buy that.
Passion for Peaches (Left Coast)
Fairy tale. Farming is a high-stress way to make a living. It can also be extremely dangerous (high incidence of workplace accidents). “Contamination” of produce and meat “by any substance to increase yield”? So you used no organic fertilizers, or organic pesticides or fungicides? I doubt that. There are harmful substances and organisms everywhere. Even organic, humanely raised chicken eggs can expose you to salmonella. Parasites are spread in animal waste. Anthrax can exist in soil. Contrary to popular myth, nature is neither pure not beneficent. To many generalizations, too much extrapolation, and too much magical thinking, Mel.
Jasil (New York)
Late last summer, I finally discussed with my GP all of the issues I’d been having after eating and drinking, nearly all the time. Pain in my lower gut was disruptive to my life, and the urgent/freguent restroom trips as a result of the pain, were upsetting. I was referred to a GI who did blood tests for food allergies and had a celiac test conducted (surgical), only to learn that foods were my triggers for illness. Eliminating wheat/gluten, egg whites, cow’s milk dairy products (butter, cheese, cream, etc.), and a few other items, made me feel better nearly immediately. I did not have any medications prescribed, but rather changed my diet significantly. Nine months later, and most noticeably when I eat out at restaurants, I can tell immediately if a restaurant has “cheated” or not been as cautious as requested, during food preparation. I can taste and feel the reaction upon ingestion. I now read all food labels - you should too, as you’d be amazed at how many prepared “quick” meal options contain wheat, sugar and filler ingredients that add no nutritional value. Be vigilant with your own diet to get and stay healthy.
SK (Boston, MA)
At some point the larger question to ask is what is happening to our food and or bodies that causes the necessary act of eating to be become a danger to one's own existence? Food allergy has had an exponential rise over the last 30 years--with the majority of new cases arising in young people. 1 in 13 Americans manages a diagnosed food allergy (foodallergy.org). EGE it appears, is food allergy's latest evolution. In comparison to other equally common life-threatening health issues, such as cancer or heart disease, it's the relatively minuscule investment in food allergy research that limits understanding beyond the basic science that currently pinpoints mis-identified proteins as the root cause of reactions. Advanced, or even progressive treatments, where they do exist, are difficult to access. This mother daughter team has my greatest respect and empathy--their persistence was life-saving. As a fellow mom who supports a child managing anaphylactic food allergies to eggs, peanuts, treenuts, sesame and shellfish, we especially understand how the only real long-term management tools of allergen elimination and avoidance (and emergency EpiPen) can have a significant impact on quality of life. My daughter and I wish this young woman the best as she works through creating a new diet and lifestyle that keep her EGE symptoms at bay.
Ellen Shapiro (Ontario)
Eosinophilic gastroenteritis is common in cats and dogs. While parasites can be involved, dietary sensitivity is frequent. Human medicine would be enriched by more recognition of the shared diseases of humans and other animals. There is considerable untapped veterinary wisdom applicable to the human species.
newfie3 (Hubbardston MA)
As a veterinarian, I certainly agree! The concept is called "One Health".
Margarat (San Diego, CA)
Immune dysfunctions like this didn't used to be common in pets. The same damaging trajectory is happening to all of us.
Neil M (Texas)
Thank you for another illuminating medical diagnosis. Reading some of these articles makes me almost jealous that I have lived for the most part a trouble free life (I am pushing 70) - and I could use a health issue to educate myself more. And perhaps, educate a few doctors along the way. Then again, may be not
Al (Boston)
This exact thing happened to me- three trips to the ED before being admitted because I didn't look "sick enough" despite a 50% eosinophil count. I spent 16 months on oral steroids and hold my breath everyday that it doesn't flare up because I will never forget how painful it was.
Sandra (Albany)
What does it mean that this is a "new disease?" Recently identified or newly existing in the world?
Lisa Sanders MD (New Haven, CT)
Who can say? Certainly allergies are more common now - particularly food allergies. And this particular type of allergy is quite rare in less "developed" countries. So maybe new. Or just newly found.
MaxCornise (Washington Heights)
I would never go back to suspect foods if I had had such a severe reaction; good for the patient that she’s following her instincts and laying off alcohol and caffeine—not only anti-nutritive but in normal American-size quantities (I.e. too much of everything) the body begins to reject what we crave. Crisis is a dangerous opportunity in Chinese culture, so everything in the diet has to be considered. We are still sooo far behind in understanding that the root of most diseases is in diet. The average intake of dairy and wheat and sugar in America is a carcinogen in itself. Add booze and caffeine and you are a Molotov cocktail.
Jamie (Rudert)
I have EGE and spent a lot of time seeing gastroenterologists. It wasn't until I did a blood test for food allergies that it became clear I was allergic to a rather wide range of food items. I eliminated the top 3 food items I was allergic to from my diet and did a one week regimen of prednisone and my tissue and serum eosinophil levels dropped significantly. My IgE levels are still out of wack but my symptoms are under control.
Richard P. Handler, M.D. (Evergreen, Colorado)
First of several eosinophilic gastritis cases I saw in my internal medicine career in Saranac Lake, NY (I am now retired) was in the 1970s. Was a strong healthy young female athlete with unrelenting gastritis and eosinophilia. Academic gastroenterology had no helpful ideas. I treated her with prednisone and tapered over about a month. Response was rapid, complete, and over many subsequent years no recurrence.