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Posted (edited)

Hello!

I'm just wondering if anyone here can offer any advice on how to convince doctors that I'm gluten intolerant.

My history-

I've always been underweight no matter what I eat and prone to illness, and I've had severe pneumonia three times, one bout requiring a partial lobectomy. I never considered any sort of disease as the culprit for my poor health, but I accidentally stumbled onto celiac disease back in 2011.

I'd been running daily for several years, and was trying to bulk up on the cheap by eating a box of pasta a day, oatmeal, bags of cereal, and any other inexpensive high-calorie foods I could get my hands on. For about a year, I began dropping weight and developed painful swollen hands. I finally went to the E.R. after one of my eyes turned bright red and felt excruciatingly painful, where I was referred to a specialist and received an iritis diagnosis. A couple weeks later, I abruptly lost the enamel on one of my front teeth. I looked up the symptoms, and found that it was textbook celiac.

Without reading too much about celiac disease, I decided to cut out gluten just on a whim to see if my symptoms improved. Within a week, I started rapidly dropping weight and my face went white. At its worst, I passed easily-digestible gel cap vitamins whole. I did some more research, and found that a minority of patients actually get worse when they cut out gluten. Considering that I had no idea that this phenomenon even existed, yet still got much worse even though I was expecting to feel better, that clinched it for me - I likely had celiac disease.

Once the "withdrawal" period passed, I ended up gaining 20 pounds despite the fact that I was eating far less than before. Whenever my bowel habits suddenly changed for the worse, I'd scour my diet and find that I made a rookie mistake - eating soy sauce, cross-contaminated oats, etc.

I didn't have health insurance until several years ago, so I never sought care for my gastro issues. I ended up in the hospital in 2013 for a necrotizing strep infection, where I received a blood test that finally confirmed celiac disease.

Fast forward a few years, and I'm finally insured and want to do something about my symptoms. I went for my first appointment with a family doctor, who treated me like a wackjob fad dieter. I didn't have copies of my medical records yet, so I had no defense at the time. Every symptom I told him was met with the same condescending dismissal - "who TOLD you you had iritis?" etc., and he then proceeded to give me an impromptu blood test to check for celiac. When I asked "But don't you have to eat gluten first to test positive?" he smirked and gave a non-answer - "Oh, I wouldn't ask you to eat a Twinkie and get sick." The nurse was openly hostile after running the blood test, and sharply said "you're fine" before the doctor came back into the room and gave me a lecture about "assuming" that I have an illness. He then referred me to a gastro doctor.

The gastro doctor did an endoscopy and colonoscopy, and found iron deficient anemia and ulcers in my small intestine and duodenum. He had me eat gluten for two days leading up to the procedures, which he claimed was ample time to test positive for the disease. I'm aware that doctors tend to take it as a personal affront when patients disagree with them, so I played along and acted overjoyed to find out that I could eat wheat again. His diagnosis was Crohn's disease. But when I politely asked if my tooth enamel defects are a symptom of Crohn's, he confirmed that they aren't, but had actually never even heard of celiac disease causing tooth enamel loss. After gently pursuing this line of questioning further, he finally said "I'm not a dentist" and walked out in a huff without saying goodbye. No follow-up care was offered.

Ever since that initial GP visit, I've had nothing but overt dismissal from every doctor I visit, even when I bring copies of my medical records. I feel that the more doctors I see who make a snap judgment that I'm a hypochondriac, it just adds yet another doctor to the list of physicians who put down "hypochondria" or "anxiety" in my medical records, which makes it even more difficult to be taken seriously by future doctors.

My health has been failing me in recent years - no matter how immaculately I eat, I have to get up at least four hours before I need to leave the house so I can get repeated bouts of severe diarrhea. This entails literally getting up at 2 am to get to an 8 am appointment. I can't live like this much longer, but I've stayed away from doctors in recent years because I literally break down in tears from sheer frustration once I leave the office.

Can anyone offer any advice on how to handle doctors? I always make sure that I defer to their judgment and try not state anything in absolutes, and I'm naturally a very friendly and empathetic person, so my demeanor isn't confrontational. I'm dreading going to a new gastro doctor because I'm half expecting to be told that I'm imagining everything. I'd think that a Crohn's and iritis diagnosis, plus a positive blood test, would be enough to convince most reasonable doctors, but apparently not.

Thanks!

Edited by moleface

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I am sorry to hear about your frustrating experience with the physicians.

To me, the real question is: are you on a strict gluten free diet, and are you feeling better and healthier?

If you are, you don't need to "convince" any doctors, you don't need their blessing, certainly not their attitude.   It is your own body, if you know that gluten makes you feel bad, don't eat it.

My daughter was diagnosed 4 years ago.   We haven't seen our GI doctor in 3+ years.   Celiac disease does not require medication.   You self medicate through a gluten free lifestyle.

BUT...if you have been on a gluten free diet for years now, and still have issues, then you might want to be open to listen to the GI doctor about other possibility (perhaps in addition to celiac) that could be giving you health problems.

 

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You have Chrohns disease and the doctor isn't doing anything about it?  chrohn's  is a serious life threatening disease .  Celiac is serious, but not like  Crohn's.  

 

 

.  

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44 minutes ago, gluten-free-Cheetah Cub said:

I am sorry to hear about your frustrating experience with the physicians.

To me, the real question is: are you on a strict gluten free diet, and are you feeling better and healthier?

If you are, you don't need to "convince" any doctors, you don't need their blessing, certainly not their attitude.   It is your own body, if you know that gluten makes you feel bad, don't eat it.

My daughter was diagnosed 4 years ago.   We haven't seen our GI doctor in 3+ years.   Celiac disease does not require medication.   You self medicate through a gluten free lifestyle.

BUT...if you have been on a gluten free diet for years now, and still have issues, then you might want to be open to listen to the GI doctor about other possibility (perhaps in addition to celiac) that could be giving you health problems.

Oh, definitely. I'm not dismissive of the Crohn's diagnosis, but I'm just confused why gluten intolerance is so out of the question to doctors.

When I ate wheat for two days leading up to my gastro procedures, I developed itchy hands - a symptom I didn't even know existed. I also eat an extremely healthy but limited diet, and every time I get sick again, I look at anything different I ate during that period and inevitably find that I got contaminated.

The tooth enamel is another dead giveaway. As far as I know, no other disease causes the tops of the teeth to die off like that. When I asked one doctor about it, he made a comment about my "lifestyle." Meanwhile, I've always been an obsessive flosser and tooth brusher and have only had a couple cavities in my entire life.

Thanks for the advice!

44 minutes ago, gluten-free-Cheetah Cub said:

 

 

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13 minutes ago, kareng said:

You have Chrohns disease and the doctor isn't doing anything about it?  chrohn's  is a serious life threatening disease .  Celiac is serious, but not like  Crohn's.  

 

 

.  

Yeah, I'm surprised too. I wasn't even aware that it was such a serious disease - despite the fact that doctors apparently think I'm some WebMD-reading fad dieter, I almost never worry about my health. As long as I'm taking good care of myself, I consider everything else to be beyond my control. I assumed that it wasn't that big of a deal because I didn't think a doctor would just discharge me to my own devices after giving a serious diagnosis.

I spoke to a friend who's a nurse, and she thinks that the issue is that I currently live in a small town. Small communities tend to lag behind large cities socially, so I'd assume that the same applies to the medical field. There's actually a weird bias against health food here - at jobs, I get ridiculed by coworkers for being spotted eating fruit salad or whatever on my lunch break. I suspect that most doctors around here consider the gluten free diet to be a "liberal" health food fad.

Not only that, but I only recently got health insurance and I still go to the local sliding scale health clinic for care. I'm assuming that the quality of care provided at a public clinic must pale in comparison to a normal doctor.  I've been turned away a couple times because the doctors there tell me I have no record of iritis or Crohn's. Last time this happened, I asked them to check my charts, and they came back 10 minutes later saying there was no record of it. This same doctor ordered an impromptu blood test and then mailed me a passive-aggressive letter (they NEVER mail letters) telling me my blood tests were "fine". I'm assuming this is because I reported him to the front desk for refusing to treat my iritis, and he caught wind of it. I've gotten iritis once or twice a year since 2011, and the symptoms are impossible to mistake for something else, yet despite my history most doctors tell me I'm "self diagnosing" when I come to them during a flare-up. That same doctor changed the diagnosis from iritis to "red eye", and I ended up sustaining permanent vision damage after having iritis for several months. My eye on that side no longer dilates, for whatever reason. Weird stuff.

I think the issue is that somehow "hypochondria" got put on my charts. Once you get diagnosed with that, it's the kiss of death. Doctors seem to think that a hypochondria diagnosis trumps all other evidence. I hate to say it, but I'm really starting to hate doctors after going through this. I got sick 7 years ago and I've all but given up trying to get help after these frustrating experiences.

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I agree.   What you need is a good doctor.   You shouldn't have to worry about how to convince a doctor about feeling sick and helpless.

Crohn's  is indeed a very serious disease, and even more difficult to control than celiac.   People with Crohn's  tend to avoid a lot of food, including gluten.

Good luck to you!

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Hi moleface and welcome! :)

I found your posts a tough read because I felt like I could've written them myself. I was raised to think of the doctor as all knowing and it's only through painful experience that I've taken them down from that childish pedestal and look at them dispassionately as either good, (rare) bad, (less rare) or mediocre (most of them). To be fair this now matches up to the medical students I knew at University... 

Where celiac / gluten sensitivity is concerned however there's an additional ignorance factor to take in. Many of them have had little training. I saw one estimated they received half a day on celiac etc during their 7 year training period. I've had doctors assure me that one week on gluten is enough for the blood test to be accurate. Later finding out it was guess work on their part. There are so many bizarre ways that the condition can manifest and every case seems different.

I don't have any easy answers and my experience of US healthcare is limited but suggest.

Firstly, you need a fresh start with a good doctor and the Crohns is serious and needs treatment. Do the research, find a doctor that references celiac or intolerance issues, looks for online reviews, travel if necessary and write them a short letter detailing your previous experiences, the pain you are currently in and your need for help. You need and deserve good caring medical care and if you're upfront about past issues a good doctor will look to help. If they don't or refuse then you know they weren't any good in the first instance.  

Second, I wouldn't even bother opening up the celiac or gluten sensitive box. You've excluded gluten from your diet a long time ago and you're not going back to it? So, just say:

'For your reference, years ago following health problems I decided to exclude gluten from my diet and I noticed a very significant response from my body. I did pursue medical confirmation but unfortunately the advice I was given at the time turned out to be incorrect and my subsequent negative diagnosis may not be reliable although my endoscopy did reveal other issues which may be related. Given my positive response to the gluten free diet I continue to follow it to this day and given there's no treatment available other than the diet I already follow I'm not concerned about chasing a celiac diagnosis.'  

Document everything. Record visits, write brief notes. Before a consult have your notes in order and have any questions you have listed as concisely as possible.

Hi Dr I have noticed

Symptom 1, duration, Symptom 2, duration, Symptom 3, duration

Be concise, be organised, be polite, but do ask questions if you're not getting listened to and don't be fobbed off. Ask a closed question if you're not getting anywere. ie. Doctor given symptom 1,2 and 3 can you please explain to me how you have excluded Crohns as a potential diagnosis?

Finally you can take some advice from the ancient stoic philosophers and manage your own expectations to minimise the stress doctor visit causes. You won't get a whip smart diagnostician from 'House' although you may get one with his people skills :P I look at them now like mechanics. Some of them are better than others at different things and the small town guy who fixes every different type of car deserves respect but may not be the best person at recognising issues with an obscure Italian car from the late 70's. Just get what you can from them but this:

55 minutes ago, gluten-free-Cheetah Cub said:

I agree.   What you need is a good doctor.   You shouldn't have to worry about how to convince a doctor about feeling sick and helpless.

should be a bare minimum. If you're not getting that move on until you do.  

Wishing you the best of luck!

Matt

 

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11 hours ago, Jmg said:

Hi moleface and welcome! :)

I found your posts a tough read because I felt like I could've written them myself. I was raised to think of the doctor as all knowing and it's only through painful experience that I've taken them down from that childish pedestal and look at them dispassionately as either good, (rare) bad, (less rare) or mediocre (most of them). To be fair this now matches up to the medical students I knew at University... 

Where celiac / gluten sensitivity is concerned however there's an additional ignorance factor to take in. Many of them have had little training. I saw one estimated they received half a day on celiac etc during their 7 year training period. I've had doctors assure me that one week on gluten is enough for the blood test to be accurate. Later finding out it was guess work on their part. There are so many bizarre ways that the condition can manifest and every case seems different.

I don't have any easy answers and my experience of US healthcare is limited but suggest.

Firstly, you need a fresh start with a good doctor and the Crohns is serious and needs treatment. Do the research, find a doctor that references celiac or intolerance issues, looks for online reviews, travel if necessary and write them a short letter detailing your previous experiences, the pain you are currently in and your need for help. You need and deserve good caring medical care and if you're upfront about past issues a good doctor will look to help. If they don't or refuse then you know they weren't any good in the first instance.  

Second, I wouldn't even bother opening up the celiac or gluten sensitive box. You've excluded gluten from your diet a long time ago and you're not going back to it? So, just say:

'For your reference, years ago following health problems I decided to exclude gluten from my diet and I noticed a very significant response from my body. I did pursue medical confirmation but unfortunately the advice I was given at the time turned out to be incorrect and my subsequent negative diagnosis may not be reliable although my endoscopy did reveal other issues which may be related. Given my positive response to the gluten free diet I continue to follow it to this day and given there's no treatment available other than the diet I already follow I'm not concerned about chasing a celiac diagnosis.'  

Document everything. Record visits, write brief notes. Before a consult have your notes in order and have any questions you have listed as concisely as possible.

Hi Dr I have noticed

Symptom 1, duration, Symptom 2, duration, Symptom 3, duration

Be concise, be organised, be polite, but do ask questions if you're not getting listened to and don't be fobbed off. Ask a closed question if you're not getting anywere. ie. Doctor given symptom 1,2 and 3 can you please explain to me how you have excluded Crohns as a potential diagnosis?

Finally you can take some advice from the ancient stoic philosophers and manage your own expectations to minimise the stress doctor visit causes. You won't get a whip smart diagnostician from 'House' although you may get one with his people skills :P I look at them now like mechanics. Some of them are better than others at different things and the small town guy who fixes every different type of car deserves respect but may not be the best person at recognising issues with an obscure Italian car from the late 70's. Just get what you can from them but this:

should be a bare minimum. If you're not getting that move on until you do.  

Wishing you the best of luck!

Matt

 

Thanks for the advice and support!

I go out of my way to avoid saying anything that could be construed as "self diagnosis," but I end up being forced to gently suggest the possibility of gluten intolerance once the doctors seem baffled by my symptoms. Especially when I point to my teeth and get comments about my "lifestyle" - at that point, I'm just defending my honor in the face of people who seem to be suggesting that I don't brush my teeth and/or do meth. My teeth are actually my biggest issue. If I wasn't being blamed for my missing tooth enamel, I wouldn't bother trying to convince anyone that I have issues with gluten.

Re: Crohn's disease - as far as I know, the disease is idiopathic. From what I understand, Crohn's is just a name for systemic autoimmune inflammation that affects the gastro system. So considering that I react so strongly to gluten, I'd assume that my condition is essentially "end stage" inflammation caused by a lifetime of heavy gluten exposure. Or I may suffer from multiple food sensitivity, though I don't anticipate any doctors willing to explore this possibility. My symptoms eventually improved once I went gluten-free, at least in the sense that I have constant diarrhea instead of bloating and constipation. Whenever I eat gluten by mistake, the telltale symptom is that I get stopped up for a day or two.

I guess I shouldn't be surprised that doctors can be so irrational - I mean, this is the same group of people who tell themselves that free lobster dinners and medical symposiums held near golf courses aren't just transparent drug company bribes. It's still infuriating that these people literally hold my life in their hands though.

What about discretely recording audio of the visits on my phone? Most doctors I've seen play the hypochondria card, but one doctor who DID take me seriously instead told me I was delusional for thinking that other doctors were so dismissive. I'd like hard evidence that I'm not behaving irrationally during appointments. I feel that most physicians will bend the facts to make the patient the problem, if the alternative is to admit that a fellow doctor may have made a mistake. The medical field is shockingly cult-like.

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As a quick follow-up, I wanted to say that I'm trying once again to find a doctor who will take me seriously, and I'm hoping that hedging my wording during visits will yield better results. If not, I'm pretty much at a complete loss for what to do anymore. I'll post my results to this thread once I've gone to some appointments.

I developed painful iritis/uveitis again this week but I still haven't gone to a doctor. I'm not sure why it's considered "self diagnosing" to assume that I have iritis again, especially since I've had it yearly for the better part of a decade, plus the fact that the symptoms are always very distinct. In every one of these cases, I brought copies of my previous iritis diagnoses to the first visit, and my suspicion was always confirmed by a specialist during the subsequent appointment. Not sure why doctors are still so quick to think I'm imagining everything, even after repeatedly being proven wrong through medical tests.

I'm about as far from a hypochondriac as someone can get. I don't even like going to doctors - until I had medical insurance, I went twice in 20 years. Over the last decade, I broke several bones while out biking and running, yet always just wrapped up the injury and waited for it to heal without any professional medical treatment. Then the rare doctors who DO take me seriously say that it's my fault that I'm so sick because I "refuse" to go to doctors. I feel that it's lose-lose, no matter what I do.

 

If this final attempt to find a competent doctor falls flat, I'm considering dropping out of the medical system altogether. If I try to deal with it on my own, at least I wouldn't have to deal with wealthy "3 martini lunch" golfer types literally laughing at me,

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I have only been dismissed by one doctor re: celiac, but everything else you have written sounds like my experience with doctors in general. 

I don't know if it is necessarily your small town because I had terrible experiences in San Francisco and LA. It took me 4 years to diagnose a torn ligament in my hip (which occurred because I was hit by an SUV in a crosswalk) because no one would believe my symptoms. I had a pinched nerve under my piriformis muscle which was alleviated with botox injections AND bursitis which was alleviated with a few rounds of steroid injections, but two different docs told me I was both too flexible to have a pinched nerve and too young to have bursitis. One doctor even diagnosed me with fibromyalgia. And it's not like they didn't see my medical records from my accident that showed where I was hit, how far I flew in the air and where (and how) I landed on the pavement. X-rays and CTs showed clear injuries to my neck, lower back, and pelvis. 

"You still have pain in your lower back and hip, and you're tired all the time on the 5mg of Norco three times a day and would like to NOT take those meds anymore? Hmmm, let me see... Here's a referral to a psychiatrist." <--- that was my pain management doctor.

TL;DR -- I completely get how frustrating it is when doctors don't listen to you and treat you like your symptoms aren't real. The best advice I have is to keep going to these appointments and if they do not help, get a referral to someone else. It took me going through neuro, chiro, PT, and a host of other specialties until someone said, "Hey, let's stick a camera in her hip joint!" which finally showed the HUGE tear in my ligament and they approved me for surgery (which alleviated almost all of my pain by the way). It may take forever, but unfortunately, I haven't found a way to talk to doctors that makes them actually hear you. You kind of have to play dumb and just let them lead you. At some point, you will find a doctor who cares and who is willing to help you heal. 

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On 4/23/2018 at 1:30 PM, chrissy-b said:

I have only been dismissed by one doctor re: celiac, but everything else you have written sounds like my experience with doctors in general. 

I don't know if it is necessarily your small town because I had terrible experiences in San Francisco and LA. It took me 4 years to diagnose a torn ligament in my hip (which occurred because I was hit by an SUV in a crosswalk) because no one would believe my symptoms. I had a pinched nerve under my piriformis muscle which was alleviated with botox injections AND bursitis which was alleviated with a few rounds of steroid injections, but two different docs told me I was both too flexible to have a pinched nerve and too young to have bursitis. One doctor even diagnosed me with fibromyalgia. And it's not like they didn't see my medical records from my accident that showed where I was hit, how far I flew in the air and where (and how) I landed on the pavement. X-rays and CTs showed clear injuries to my neck, lower back, and pelvis. 

"You still have pain in your lower back and hip, and you're tired all the time on the 5mg of Norco three times a day and would like to NOT take those meds anymore? Hmmm, let me see... Here's a referral to a psychiatrist." <--- that was my pain management doctor.

TL;DR -- I completely get how frustrating it is when doctors don't listen to you and treat you like your symptoms aren't real. The best advice I have is to keep going to these appointments and if they do not help, get a referral to someone else. It took me going through neuro, chiro, PT, and a host of other specialties until someone said, "Hey, let's stick a camera in her hip joint!" which finally showed the HUGE tear in my ligament and they approved me for surgery (which alleviated almost all of my pain by the way). It may take forever, but unfortunately, I haven't found a way to talk to doctors that makes them actually hear you. You kind of have to play dumb and just let them lead you. At some point, you will find a doctor who cares and who is willing to help you heal. 

Thank you for the advice!

I'm so sorry that you had to deal with that. It makes me feel less alone to read peoples' medical horror stories online, but I hate to think of the potentially millions of people who are suffering because of the shortsighted egomania of doctors.

You're right that I need to play dumb - I realized years ago that doctors take it as a personal affront if a patient doesn't infantalize himself. Still, I get the distinct impression that these golfing yuppies are just offended by the idea that a lowly peasant could possibly know something that they don't. That attitude would be bad enough, but peoples' lives are literally being destroyed by it. Sometimes I get so frustrated and angry that I'd rather just continue rotting away from the inside out than subject myself to that smug condescension any longer.

Even before my issues with my gastro disease, I had similar experiences with other health problems. I had necrotizing strep I'd been carrying for more than half a year, and exactly two weeks before I ended up hospitalized with a collapsed lung, an ER doctor told me I was suffering from  "allergies." When I brought this up with the doctors in the hospital, they insisted that I must have developed pneumonia in the two weeks between the initial ER visit and my hospitalization. Yeah, sure - in two weeks my lungs abruptly developed abscesses and filled up with sacs of pus and blood.

After my lung surgery, I spent the next four months coughing up fluid until I gagged. My family literally begged me to return to the doctor, which I was hesitant to do because I still didn't have insurance. The E.R. doctor told me matter-of-factly that "strep can't cause pneumonia", and when I lifted up my shirt and showed him the scars from the lobectomy, he just stared, said nothing, and then changed the subject. Keep in mind, this is the exact same hospital where the surgery had been done several months prior. As I was leaving, I heard the doctor who'd seen me talking to the nurses - "Well, if he doesn't trust the staff's expertise, then I don't know what to TELL him...". I wasn't even being difficult or forceful - the issue seemed to be that I had the audacity to politely disagree with the all-knowing doctor.

I know I'm only hurting myself if I spend every day getting violent diarrhea with full-body inflammation, but part of me wants to bail altogether. The frustration of dealing with these doctors makes me feel like I'm losing my mind. I feel like I have to grit my teeth and politely agree when people are condescendingly lecturing me that the sky is green. At a certain point, when everyone around me is telling me to doubt my own perception, I can't help but let serious self-doubt seep into my psyche. It's so frustrating. I won't even hedge my words anymore - I legitimately hate doctors now. These are the same types who would've snickered at anyone who disagreed with lobotomies back in the 50s or 60s.

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    How do you handle scrutiny or sabotage of others toward your dietary requirements? Please speculate on what cultural, religious or media influences you suppose contribute to a rationalization for the sabotage and/or scrutiny from others when we state we are observing a gluten-free diet? Are people emulating something they heard in church, seen on TV, or read online?    We welcome your answers below.
    References:
    ABC. (2018). Retrived from https://abcnews.go.com/Health/video/jimmy-kimmel-asks-what-is-gluten-23655461  Batista, M. T., Lima. M. L. (2013). Who’s eating what with me? Indirect social influence on ambivalent food consumption. Psicologia: Reflexano e Critica, 26(1), 113-121.  Brady. (2017). Retrieved from https://www.businessinsider.com/tom-brady-gisele-bundchen-have-an-insane-diet-2017-2  Higgs, S. (2015). Social norms and their influence on eating behaviors. Appetite 86, 38-44. Myth. (2015). Retrieved from https://www.nytimes.com/2015/07/05/opinion/sunday/the-myth-of-big-bad-gluten.html  Pollan, M. (2014). Retrieved from https://www.huffingtonpost.com/2014/05/14/michael-pollan-gluten-free_n_5319357.html  Roth, D. A., Herman, C. P., Polivy, J., & Pliner, P. (2000). Self-presentational conflict in social eating situations: A normative perspective. Appetite, 26, 165-171. Wellness. (2016). Retrieved from  https://www.huffingtonpost.com/entry/ted-cruz-gluten-free-military-political-corectness_us_56c606c3e4b08ffac127f09f

    Jefferson Adams
    Woman Calls Radio Show to Admit Lying About Gluten-Free Baked Goods
    Celiac.com 10/16/2018 - Apparently, local St. Louis radio station Z1077 hosts a show called “Dirty Little Secret.” Recently, a woman caller to the show drew ire from listeners after she claimed that she worked at a local bakery, and that she routinely lied to customers about the gluten-free status of baked goods.
    The woman said she often told customers that there was no gluten in baked goods that were not gluten-free, according to local tv station KTVI.
    Apparently the woman thought this was funny. However, for people who cannot eat gluten because they have celiac disease, telling people that food is gluten-free when it is not is about as funny as telling a diabetic that food is sugar-free when it is not. Now, of course, eating gluten is not as immediately dangerous for most celiacs as sugar is for diabetics, but the basic analogy holds.
    That’s because many people with celiac disease suffer horrible symptoms when they accidentally eat gluten, including extreme intestinal pain, bloating, diarrhea, and other problems. Some people experience more extreme reactions that leave them in emergency rooms.
    As part of a story on the “joke” segment, KTVI interviewed celiac sufferer Dana Smith, who found the punchline to be less than funny. “It’s absolutely dangerous, somebody could get very sick,” said Smith. 
    KTVI also interviewed at least one doctor, Dr. Reuben Aymerich of SSM St. Clare Hospital, who pointed out that, while celiac disease is “not like diabetes where you can reduce the amount of sugar intake and make up for it later, it’s thought you need to be 100 percent compliant if you can.”
    For her part, Smith sought to use the incident as a teaching moment. She alerted the folks at Z1077 and tried to point out how serious being gluten-free is for many people. Mary Michaels, owner of Gluten Free at Last Bakery in Maryville, Illinois, says it’s time people became more respectful.
    “I wouldn’t make fun of you if you had diabetes or a heart condition it’s kind of like that,” Michals said.
    We will likely never know if the radio station caller was telling the truth, or just putting listeners on. The Z1077 morning team did post a follow-up comment, which stated that they take celiac disease seriously, and that they did not intend to offend anyone. One host said his mom has celiac disease.
    It’s good to see a positive response from the radio station. Their prank was short-sighted, and the caller deserved to be called out on her poor behavior. Hopefully, they have learned their lesson and will avoid such foolishness in the future. Let us know your thoughts below.

    Jefferson Adams
    New Study Says One in Three 'Gluten-Free' Restaurant Foods Contain Gluten
    Celiac.com 10/15/2018 - If you’re on a gluten-free diet for medical reasons, then you’re probably already cautious about eating out. A new study tells us exactly why people with celiac disease and other gluten-sensitive conditions have reason to be very careful about eating out.
    According to the latest research, one in three foods sold as "gluten-free" in U.S. restaurants actually contain trace levels of gluten.
    This is partly due to the fact that the gluten-free diet has become popular with many non-celiacs and others who have no medical need for the diet. That has led many restaurants to offer gluten-free foods to their customers, says study author Dr. Benjamin Lebwohl, of Columbia University's Celiac Disease Center. 
    But, if this research is any indication, too many restaurants don’t do a good job with gluten-free. For the study, more than 800 investigators set out to assess the true gluten content of dishes listed as "gluten-free" on menus. Armed with portable gluten sensors, they tested for gluten levels that met or exceeded 20 parts per million, the standard cutoff for any gluten-free claim.
    Based on more than 5,600 gluten tests over 18 months, the investigators determined that 27 percent of gluten-free breakfast meals actually contained gluten. At dinner time, this figure hit 34 percent. The rise could reflect a steady increase in gluten contamination risk as the day unfolds, the researchers said.
    Off course, the risk is not all equal. Some restaurants are riskier than others. Unsurprisingly, the biggest culprit seems to be restaurants that offer gluten-free pastas and pizzas. Nearly half of the pizza and pasta dishes from those establishments contained gluten, according to the study.
    Why is that? Well, as most folks with celiac disease know all too well,  kitchens aren’t really set up to segregate gluten, and "sharing an oven with gluten-containing pizza is a prime setting for cross-contamination," says Lebwohl. Also, too many restaurants use the same water to cook gluten-free pasta as they do for regular pasta, which contaminates the gluten-free pasta and defeats the purpose.
    Moreover, although the U.S. Food and Drug Administration regulates gluten-free labels on packaged food products, there is currently no federal oversight of gluten-free claims in restaurants. 
    The results of the study will be presented today at a meeting of the American College of Gastroenterology, in Philadelphia. Research presented at meetings is usually considered preliminary until published in a peer-reviewed medical journal.
    In the absence of federal enforcement at the restaurant level, the burden for making sure food is gluten-free falls to the person doing the ordering. So, gluten-free eaters beware!
    These results are probably not surprising to many of you. Do you have celiac disease? Do you eat in restaurants? Do you avoid restaurants? Do you have special tactics?  Feel free to share your thoughts below.
    Read more at UPI.com

    Carol Fenster, Ph.D.
    Almost Homemade: Using Ready-Made Cereals and Crackers in Home Cooking
    Celiac.com 10/13/2018 - Two important principles sort of collided in my brain the other day.  One was the recent recommendation to increase our intake of whole grains based on the new food pyramid from the USDA.  The other was our interest in time-saving prepared foods to make dishes that are at least partially homemade.
    About the same time these two ideas were melding in my brain, I realized how many wonderful new gluten-free cereals and crackers are now on the market.  I wondered if we could boost our whole grain intake by using ready-made gluten-free cereals or crackers in home cooking.  While not all of the cereals and crackers are truly “whole” grain, most are only partially refined and still quite nutritious.
    So, here’s my idea: One of my favorite desserts is a fruit crisp.  You can make it any time of the year, using fruits in season (in my case, fruits that have sat on the kitchen counter past their prime, yet are still edible).  In the fall it might be apples.  Winter is perfect for pears.  I like stone fruits during summer, such as peaches, plums, or cherries.  Or, if you’re really desperate just open a can of whatever fruit appeals to you.
    Revving Up Your Home Cooking with Ready-Made Cereals 
    Here’s where the new cereals come in.  Prepare the fruit filling according to any fruit crisp recipe or use the recipe I provide here.  For the topping, I like to toss Nutty Rice or the new Nutty Flax cereal from Enjoy Life Foods with maple syrup (or honey, brown rice syrup, or agave nectar).  Add ground cinnamon to taste and then sprinkle it over the prepared fruit.  Spray with cooking spray and bake at 350°F until the fruit is done and the topping is browned. 
    Sometimes to speed things up, I microwave the covered fruit filling for 5-10 minutes on high, then uncover it, add the topping, and bake at 350°F for 15-20 minutes or until the fruit is soft and the topping is crisp and nicely browned.  I particularly like the Nutty Flax cereal because it uses both flax and sorghum for a nutritious combination.  Add extra spices such as 1/8 teaspoon each of nutmeg, allspice, or cloves for even more flavor.  
    I also like to use the granola from Enjoy Life Foods as the topping for these fruit crisps. It’s already sweetened and flavored, available in Cinnamon Crunch, Very Berry Crunch, and Cranapple Crunch.  All it needs is a little oil.  Of course, if you prefer, you can toss it with a little extra cinnamon plus some maple syrup (or honey, brown rice syrup, or agave nectar) to heighten the sweetness.  Add extra spices such as 1/8 teaspoon each of nutmeg, allspice, or cloves for even more flavor.  Sprinkle over filling and spray with cooking spray.
    You can also add about ½ cup of this granola to your favorite bran muffins, cookies, or quick breads.  The granola supplies a nice crunch and additional flavor and nutrients.  Depending on your recipe, you may need to add more liquid to compensate for the cereal.  
    Quinoa cereals by Altiplano Gold are packaged in individual serving packets, making them especially easy to incorporate into our baking.  They come in three flavors––Organic Oaxacan Chocolate, Spiced Apple Raisin, and Chai Almond––and just need boiled water to make a hot cereal.  Quinoa is a powerhouse of nutrients so I like to use the cereals in additional ways as well.
    Using the same concept for the fruit crisp above, I just sprinkle the Spiced Apple Raisin or Chai Almond dry cereal on the prepared fruit filling.  Since the cereal is already sweetened and flavored, it only needs a little cooking spray.  Bake at 350°F for 15-20 minutes.  If your fruit needs additional cooking time (such as apples) try the microwave method I discuss above.
    You can add ½ cup of the Chocolate flavor to a batch of chocolate brownies or chocolate cookies for added fiber and nutrients.  Depending on the recipe, you may need to add a little extra liquid to compensate for the cereal which counts as a dry ingredient. 
    Creative Uses of Crackers in Home Cooking
    New crackers by the whimsical name of Mary’s Gone Crackers are chock-full of fiber and nutrients.  They come in Original and Caraway flavors and are a nutritious treat by themselves.  I also take them with me on trips because they travel so well. 
    One creative way to use these crackers and appease your sweet tooth is to dip the whole Original-flavor cracker halfway into melted chocolate.  Ideally, let the chocolate-dipped crackers cool on waxed paper (if you can wait that long) or else just pop them into your mouth as you dip them.  You can also place a few crackers on a microwave-safe plate, top each with a few gluten-free chocolate chips and microwave on low power until the chips soften.  Let them cool slightly so the chocolate doesn’t burn your mouth.  These crackers also work great with dips and spreads. 
    Aside from dipping in chocolate, these crackers have additional uses in baking.  For example, finely crush the Original or Caraway flavor crackers in your food processor and use them as the base for a crumb crust for a quiche or savory tart.  The Original flavor would also work great as a replacement for the pretzels typically used for the crust in a margarita pie.  Just follow your crumb crust recipe and substitute the ground crackers for the crackers or pretzels. 
    The crackers have very little sugar, but the Original flavor will work as a crumb crust for a sweet dessert as well.  Again, just follow your favorite recipe which will probably call for melted butter or margarine plus sugar.  Press the mixture into a pie plate and bake at 350°F for 10 minutes to set the crust.  Fill it with a no-bake pudding, custard, or fresh fruit.
    The crushed crackers can also be added to breads and muffins for a fiber and nutrient boost.  Depending on how much you add (I recommend starting with ½ cup) you may need to add more liquid to the recipe.  
    I’ve just given you some quick ideas for ways to get more grains into your diet and streamline your cooking at the same time.  Here is an easy version of the Apple Crisp I discuss in this article.  I bet you can think of some other opportunities to make our gluten-free diet even healthier with wholesome cereals and crackers. 
    Carol Fenster’s Amazing Apple Crisp
    You may use pears or peaches in place of the apples in this easy home-style dessert. If you prefer more topping, you can double the topping ingredients. This dish is only moderately sweet; you may use additional amounts of sweetener if you wish. Cereals by Enjoy Life Foods and Altiplano Gold work especially well in this recipe. The nutrient content of this dish will vary depending on the type of fruit and cereals used.
    Filling ingredients:
    3 cups sliced apples (Gala, Granny Smith, or your choice) 2 Tablespoons juice (apple, orange)   2 Tablespoons maple syrup  (or more to taste) ½ teaspoon cornstarch  1 teaspoon vanilla extract ¼ teaspoon ground cinnamon ¼ teaspoon salt Topping ingredients:
    ¼ cup ready-made cereal ¼ cup gluten-free flour blend of choice ¼ cup finely chopped nuts 2 Tablespoons maple syrup  (or more to taste) 2 Tablespoons soft butter or margarine 1 teaspoon vanilla extract ¼ teaspoon ground cinnamon ¼ teaspoon salt Directions:
    1.  Preheat oven to 375F.  Toss all filling ingredients in 8 x 8-inch greased pan. 
    2. In small bowl, combine topping ingredients. Sprinkle over apple mixture. Cover with foil; bake 25 minutes. Uncover; bake another 15 minutes or until topping is crisp. Top with vanilla ice cream or whipped cream, if desired.  Serves 6.

    Jefferson Adams
    Nestlé Debuts Gluten-Free Snack Bar Line Called
    Celiac.com 10/12/2018 - Snack giant Nestlé has announced the debut of a new line of gluten-free snack bars called "Yes!"
    The bars are made with combinations of fruits, vegetables, and nuts, and will contain no artificial sweeteners, flavors, colors or preservatives. Some bars do contain added sugar, but those made with fruits and vegetables do not. 
    The bars come in five flavors: Delicious Beetroot & Apple; Lively Lemon, Quinoa & Chilli; Tempting Sea Salt Dark Choc & Almond; Sumptuous Cranberry & Dark Choc; Delightful Coffee; and Dark Choc & Cherry.
    Yes! bars will be available in UK and Ireland. All Yes! bars are suitable for vegetarians, while the fruit and vegetable versions are vegan-friendly.
    No word yet on whether Nestlé plans to bring Yes! bars to the U.S. any time soon. 

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