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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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
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Guest Jemenii36

How Does Everyone Feel When They Cheat?

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Never cheated. I'm 45. I don't want to die young. Well, okay, some would say that ship has already sailed. But I don't want to die at fifty. There is way too much I want to do with my life to check out that early. My life depends on this diet, and I value life in a way I never have before. I don't know, maybe you do have to be closer to the end than the beginning to treasure every extra day you get.

Violet

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Since I never really had a FORMAL and OFFICIAL via a positive test - at first I duped myself into thinking that the Capn Crunch and Rice Krispies I was eating once per day, weren't "enough" to worry about. I had terrible awful DH, and no "reportable" stomach symptoms at the time. People on this forum chided me and told me that I could be doing damage even without a dx and symptoms. When my DH nearly killed me my Dr told me to go 100% "no-cheat" gluten free and see what happens. I did, with the help of this forum, and it's wonderful, helpful people. And the DH disappeared completely, except for when I accidentally get Glutened (which DOES happen when you travel, eat a restaurants that you don't choose, and get a "glucose free diabetic meal" instead of a "gluten-free meal" on a plane (14 hr flight) and HAVE to try to pick at the most innocent looking items (and then you get Glutened anyway!).

I DO NOT CHEAT.

When I get glutened accidentally, now I get the big D and gas for about 1 - 2 days!

(IHOP scrambled eggs REALLY got me, they didn't tell me they pre-mix pancake batter in the eggs to make them fluffier).

BUT, JUST TODAY, my primary care Dr (not the allergist that finally dx me as "gluten intolerant") told me that my "ketones" were high in my blood and he thinks that my gluten-free diet is harming me in some way, but did NOT think I should really try to go back - but thought that maybe I should challenge the diet and see if my KETONES go down......

Hmmmm. He recommended that I got to a homeopath (odd for a medical dr. to support a homeopath!!) and maybe a nutritionist. Usually ketones are up when you eat no carbs and too much protein! That's not my diet! I eat Dark Snickers and Dark Milkey Way and Reese's as comfort foods! (AND it shows on my hips now too)!

Am

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Since I never really had a FORMAL and OFFICIAL DX via a positive test - at first I duped myself into thinking that the Capn Crunch and Rice Krispies I was eating once per day, weren't "enough" to worry about. I had terrible awful DH, and no "reportable" stomach symptoms at the time. People on this forum chided me and told me that I could be doing damage even without a dx and symptoms.

When my DH nearly killed me my Dr told me to go 100% "no-cheat" gluten free and see what happens. I did, with the help of this forum, and it's wonderful, helpful people. And the DH disappeared completely, except for when I accidentally get Glutened (which DOES happen when you travel, eat a restaurants that you don't choose, and get a "glucose free diabetic meal" instead of a "gluten-free meal" on a plane (14 hr flight) and HAVE to try to pick at the most innocent looking items (and then you get Glutened anyway!).I DO NOT CHEAT. When I get glutened accidentally, now I get the big D and gas for about 1 - 2 days! (IHOP scrambled eggs REALLY got me, they didn't tell me they pre-mix pancake batter in the eggs to make them fluffier).

BUT, JUST TODAY, my primary care Dr (not the allergist that finally dx me as "gluten intolerant") told me that my "ketones" were high in my blood and he thinks that my gluten-free diet is harming me in some way, but did NOT think I should really try to go back - but thought that maybe I should challenge the diet and see if my KETONES go down...... Hmmmm. He recommended that I go to a homeopath (odd for a medical dr. to support a homeopath!!) and maybe a nutritionist. Usually ketones are up when you eat no carbs and too much protein! That's not my diet! I eat Dark Snickers and Dark Milkey Way and Reese's as comfort foods! (AND it shows on my hips now too)!

But I often really crave Dunkin Doughnuts, Waffles, Pancakes, and Angel Food Cake!!!!

And Sara Lee Walnut Coffee Ring, and cheescake WITH the crust, and CHINESE FOOD (real stuff like Wonton Soup, egg roll, Lo Mein.....) and Hostess Cupcakes, and German Spaetzel, and more............But never enough to get even close to eating it.

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Guest Jemenii36

Judy-i am soon to be 21 years old and began a gluten free diet about march of last year. I think I was not clear as to what cheating is, considering the responses. Yes, of course if I got symptoms as bad as some people do then I don't think I would EVER cheat (which is probably about once every two months if not less). And when I do cheat, I don't have a donut or bagel, I will have something such as french fries (CC). Regarding your story, I completley understand because the same thing happened with my mother. She had thyroid Cancer and has an autoimmune disorder where much of the inside of her body is scaring over now, after being on the gluten free diet. Do you think if damage has been done for so long that one will be fighting for their whole life to get healthy? It seems that many people who have been under diagnosed for many many years have so many health issues that their body will have a hard time being 'normal' again. Do you think this is true? Do you think the extraordinary damage that celiac disease has on one's body can be reversed after a certain amount of time?

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I was diagnosed 3 years ago...I cheated for quite awhile. However, what I found was that every time I cheated, the reaction got worse. I dont cheat anymore and actually I cannot tolerate many things that I used to be able to in the beginning...kind of screwed myself!

Paula

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A question comes to mind.

For those who have cheated....even tho no outwards signs of discomfort..........what are your ages? I'm only guessing but bet maybe your younger than most of us who have not cheated.

I'm 36. My 6 year old is much smarter, she'd never consider "cheating." I hope her attitude carries with her throughout her school years and beyond.

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Judy-i am soon to be 21 years old and began a gluten free diet about march of last year. I think I was not clear as to what cheating is, considering the responses. Yes, of course if I got symptoms as bad as some people do then I don't think I would EVER cheat (which is probably about once every two months if not less). And when I do cheat, I don't have a donut or bagel, I will have something such as french fries (CC). Regarding your story, I completley understand because the same thing happened with my mother. She had thyroid Cancer and has an autoimmune disorder where much of the inside of her body is scaring over now, after being on the gluten free diet. Do you think if damage has been done for so long that one will be fighting for their whole life to get healthy? It seems that many people who have been under diagnosed for many many years have so many health issues that their body will have a hard time being 'normal' again. Do you think this is true? Do you think the extraordinary damage that celiac disease has on one's body can be reversed after a certain amount of time?

I'm so glad you wrote. I had a feeling you were younger :lol:

I know my mom had un-dx'd celiac. She died 4 months after i got my dx and i didn't know about the gene's and heredity factors etc. Was a real newbie..........I could do a long list of the symptoms she had looking back....esp......GERD and precocious anemia and the dreaded 'BIG D'.

My thyroid was nuked when i was in 3rd grade........who know which came first the thyroid or the celaic........i sure don't know. Your mom's scaring all over i guess in many organs or just the digestive track? Oh, Maybe you mean healing..........right.....guess i miss read.

This is such a great question. ;)

Do you think if damage has been done for so long that one will be fighting for their whole life to get healthy? It seems that many people who have been under diagnosed for many many years have so many health issues that their body will have a hard time being 'normal' again. Do you think this is true? Do you think the extraordinary damage that celiac disease has on one's body can be reversed after a certain amount of time?[

It scares me to think that I'm not healing............I'm sure not sick like I was but am still seeking answers as to why more intolerances kept coming up. I'll learned so much from this forum in finding my way to feeling better. There is a good thread on Oxalates on here that you might find interesting reading.

Bless you at 21 for adhering so closely to this life of eating gluten-free. I'm glad to hear your terms on 'cheating' :lol: I'm sure with this definition your being really careful and cc in FF is like taking a chance........but sure not like making the decision to eat the bagel.

Good luck to you. How is your mom doing by the way?

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A question comes to mind.

For those who have cheated....even tho no outwards signs of discomfort..........what are your ages? I'm only guessing but bet maybe your younger than most of us who have not cheated.

If your in you teens or early 20's I can sure understand how very hard that must be socially. I only wish that I'd known back then and I sure wouldn't be still suffering the effects of eating gluten and other foods for so many years. I can't get those years back.

Judy

Judy, I have only cheated the one time for some taco bell.well wait that too is a lie, i think i had a bud light on new years..i miss beer. so 2 times i have cheated, the rest has been CC, i am working on getting CCd less and its working. but you are right I am 23...just turned in november...It is very hard, i went to chucky cheeses for a bday party(friends daughter) and was so tempted to have some pizza, but sat there and enjoyed my wonderful caramel flavored cardboard.

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Guest Jemenii36

paula-

yes that is what it seems like! theless u cheat the more you find you can't!!! it sucks but its only better for you in the long run and everyone is always searching for a 'healthier' lifestyle and unfortunately this is what our healthy lifestyle is! :)

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Guest Jemenii36

Judy-

It is unfortuanate the heredity has a big role in this whole thing because i do not want to pass this down to my child one day! Do you have any children, and if so do they have celiac disease? I am sorry about your mom...do u know if it had anyhting to do with celiac disease and being undiagnosed? My mom is 46 and was diagnosed last january so she still has a long recovery period to go...she is doing ok...but because of the celiac disease she has the autoimmune disorder called "lychanplanus"...iam not sure how to spell it. But basically all of her mucus membranes, prior to diagnosis, were extremely inflamed and red and sore, but now all of that is scaring over and causing a lot of problems. Considering celiac disease goes undiagnosed all too often, many doctors do not know how to fix this. We are extremely blessed to have found an amzing doctor out of NYC who is willing to work with her the whole way...but as you can imagine it is going to be a long journey. Thank you for being so concerned...How are you doing with the gluten free diet? Do you know anyone else in your family that has it currently?

It scares me to think that I'm not healing............I'm sure not sick like I was but am still seeking answers as to why more intolerances kept coming up. I'll learned so much from this forum in finding my way to feeling better. There is a good thread on Oxalates on here that you might find interesting reading.

Bless you at 21 for adhering so closely to this life of eating gluten-free. I'm glad to hear your terms on 'cheating' :lol: I'm sure with this definition your being really careful and cc in FF is like taking a chance........but sure not like making the decision to eat the bagel.

Good luck to you. How is your mom doing by the way?

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Guest Jemenii36

Judy-

It is unfortuanate the heredity has a big role in this whole thing because i do not want to pass this down to my child one day! Do you have any children, and if so do they have celiac disease? I am sorry about your mom...do u know if it had anyhting to do with celiac disease and being undiagnosed? My mom is 46 and was diagnosed last january so she still has a long recovery period to go...she is doing ok...but because of the celiac disease she has the autoimmune disorder called "lychanplanus"...iam not sure how to spell it. But basically all of her mucus membranes, prior to diagnosis, were extremely inflamed and red and sore, but now all of that is scaring over and causing a lot of problems. Considering celiac disease goes undiagnosed all too often, many doctors do not know how to fix this. We are extremely blessed to have found an amzing doctor out of NYC who is willing to work with her the whole way...but as you can imagine it is going to be a long journey. Thank you for being so concerned...How are you doing with the gluten free diet? Do you know anyone else in your family that has it currently?

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Guest Jemenii36

well it's nice to see other people cheat a little..it is always nice when someone is similar anyhow :)

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Guest Jemenii36

Judy-

It is unfortuanate the heredity has a big role in this whole thing because i do not want to pass this down to my child one day! Do you have any children, and if so do they have celiac disease? I am sorry about your mom...do u know if it had anyhting to do with celiac disease and being undiagnosed? My mom is 46 and was diagnosed last january so she still has a long recovery period to go...she is doing ok...but because of the celiac disease she has the autoimmune disorder called "lychanplanus"...iam not sure how to spell it. But basically all of her mucus membranes, prior to diagnosis, were extremely inflamed and red and sore, but now all of that is scaring over and causing a lot of problems. Considering celiac disease goes undiagnosed all too often, many doctors do not know how to fix this. We are extremely blessed to have found an amzing doctor out of NYC who is willing to work with her the whole way...but as you can imagine it is going to be a long journey. Thank you for being so concerned...How are you doing with the gluten free diet? Do you know anyone else in your family that has it currently?

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Thanks for the positive feedback! I'm really trying with the weight thing. It is crazy, sometimes if I have purposely cheated I don't get sick. Or other times, like yesterday, I was in bed all day, head fog etc..... and I have been really good the past 2-3 months. So go figure.

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Guest Jemenii36

yeah well there you go...i hope your cheat was worth it at least! :)

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Judy-

It is unfortuanate the heredity has a big role in this whole thing because i do not want to pass this down to my child one day! Do you have any children, and if so do they have celiac disease? I am sorry about your mom...do u know if it had anyhting to do with celiac disease and being undiagnosed? My mom is 46 and was diagnosed last january so she still has a long recovery period to go...she is doing ok...but because of the celiac disease she has the autoimmune disorder called "lychanplanus"...iam not sure how to spell it. But basically all of her mucus membranes, prior to diagnosis, were extremely inflamed and red and sore, but now all of that is scaring over and causing a lot of problems. Considering celiac disease goes undiagnosed all too often, many doctors do not know how to fix this. We are extremely blessed to have found an amzing doctor out of NYC who is willing to work with her the whole way...but as you can imagine it is going to be a long journey. Thank you for being so concerned...How are you doing with the gluten free diet? Do you know anyone else in your family that has it currently?

sorry for the delayed responce.

we had FiOS installed for 2 days thus no computer.

Yes i have on son who is 33. I'm not sure but GI wants him tested and we discussed it over christmas.

he doesn't have symptoms now. but as he said............" mom you didn't have symptoms at my age."

so think he's thinking about getting tested.

Not sure about my mom but my thoughts are YES probably somewhat related.

glad you mom has a good NYC dr. I haven't heard of her disease.

I think my brother has it...........but won't think about testing for it. He and i have fought our weight issues for years and since the 2 1/2 years gluten-free and other foods I've lost 70 #'s so for me this dx was the answer for me to lose weight.........i could have 'd' for 5 weeks and not eat do to nausea and gain 16 #'s. Iknow strange.........but............my illnesses have driven doctors nuts for years.

the gluten-free diet is fine for me now......it's the dairy, casein, and the other esp oxalates and nightshades....which i was using since going gluten-free..........so

guess i got all the questions answered.

thanks for caring.

Judy

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Hi,

Just to add my 2 cents....

I'm a recently-diagnosed Celiac (blood test only so far, endoscopy/biopsy on Tuesday), and have been on a gluten-free diet for less than a week (the GI said it wouldn't make any difference that quickly). Initially I thought I would find it difficult to give up the carb foods I really like, such as bread (usually w/w or multi), bagels, pasta, noodles, etc. However, so far I'm quite pleased to say I haven't really been tempted. However, just to play my own devil's advocate, it may be because I haven't been at it for very long.

I know for a fact that I have been glutened once... but it was my fault. I bought some candy (my only vice), and proceeded to start eating it without first reading the ingredients list. Well, sure enough I looked while part-way through, and it had maltodextrin... EEK! I may also have been inadvertently glutened at a Thai restaurant on Friday night, but I'm not entirely sure. As I said, I have yet to feel any positive effects, and thus don't feel the reverse either. It's a real learning process, I'll say that much.

And regarding the age factor, I just turned 30. My intent is to stick with the gluten-free diet. I currently live alone, so it's a bit easier to control what I consume that way. ;)

Cheers!

-Geoff.

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Hi Geoff,

You're doing so well!!

Maltodextrin in the USA is ok - Gluten Free.

But there are other ingredients in different candies to look for. Usually Wheat-based so they might state it in an allergen statement or bold it in the ingredients list, or just list it as is. It is "Malt FLAVORING" that is a no-no - since it is derived from Barley and they don't have to list Barley as an allergen.

Also got to watch "glucose syrup" since it can be corn or wheat based!! Mostly they list it as "corn syrup" if it is corn-based.

Good luck and I hope you stay not-missing the carbs. I finally started making my own bread just to have some complex carbs in the AM.

Franceen

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Hi Geoff,

You're doing so well!!

Maltodextrin in the USA is ok - Gluten Free.

But there are other ingredients in different candies to look for. Usually Wheat-based so they might state it in an allergen statement or bold it in the ingredients list, or just list it as is. It is "Malt FLAVORING" that is a no-no - since it is derived from Barley and they don't have to list Barley as an allergen.

Also got to watch "glucose syrup" since it can be corn or wheat based!! Mostly they list it as "corn syrup" if it is corn-based.

Good luck and I hope you stay not-missing the carbs. I finally started making my own bread just to have some complex carbs in the AM.

Franceen

Oops. Just noticed you are in Canada. I'm not sure if maltodextrin is safe in Canada! Clan Thompson says that the FDA labeling law forces them to say if it comes from wheat or barley - but that's FDA in USA!!! Best to check with Canadian counterpart for labeling laws there.

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Maltodextrin in Canada is safe.

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Although I would never deliberately cheat (knowing now what I do about what happens when the tiniest bit of gluten gets into my system), I can understand the desire to.

I think, however, it's all about perspective. You (I) have a disease/intolerance/whatever you want to label it, that you can manage. You have control (bearing in mind that there are still so many out there who are still struggling to identify precisely what food/toxin is affecting them...). For those of us who can influence how our gut/bowels/skin/neurological system reacts - well, it is a wonderous thing that we can. I spent years wondering about the cause of my stomach troubles - being shifted around from med prac to med prac. Now that I know how to prevent it, I'm just so relieved - so incredibly grateful - to be able to do so.

That is not intended to evoke any sense of guilt, at craving certain foods. Of course, that is understandable - particularly when we are surrounded by culinary "delights" we can no longer eat. If we make a conscious effort to alter our attitude towards "it" (without sounding copiously self-help preacher-like!) I do think our physical responses/cravings will inevitably begin to change as well...

xxoo

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I don't cheat. I have been CC'd but I have never intentionally consumed gluten since I started the diet.

I did have a goodbye gluten meal (pizza and brownie cheesecake) the day before I started the diet- but if I knew then what I know now about celiac I certainly would not have done it.

When I got my diagnosis I read everything I could get my hands on about the disease. It scared me straight.

I feel blessed to have found this out when I did....hopefully before I caused too much damage.

I was never sick. My only symptom of celiac was DH. If I were to order a pizza tonight from Papa Johns and eat the whole thing I would probably in itchy agony in a few days.....at least thats what I think will happen. But a gluten free life is a pain in the backside and the rash certainly is not enough of a motivation to keep going forever. The knowledge of the internal damage and my dead grandma who never got a proper diagnosis is what motivates me.

Mere

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I usually don't cheat, but sometimes, when my willpower does fail me, I always end up feeling guilty...though I don't have celiac just gluten sensitivity the symptoms make me regret cheating even more

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    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
    If you’ve flown anywhere lately, you may have seen them. People flying with their designated “emotional support” animals. We’re not talking genuine service animals, like seeing eye dogs, or hearing ear dogs, or even the Belgian Malinois that alerts its owner when there is gluten in food that may trigger her celiac disease.
    Now, to be honest, some of those animals in question do perform a genuine service for those who need emotional support dogs, like veterans with PTSD.
    However, many of these animals are not service animals at all. Many of these animals perform no actual service to their owners, and are nothing more than thinly disguised pets. Many lack proper training, and some have caused serious problems for the airlines and for other passengers.
    Now the major airlines are taking note and introducing stringent requirements for service animals.
    Delta was the first to strike. As reported by the New York Times on January 19: “Effective March 1, Delta, the second largest US airline by passenger traffic, said it will require passengers seeking to fly with pets to present additional documents outlining the passenger’s need for the animal and proof of its training and vaccinations, 48 hours prior to the flight.… This comes in response to what the carrier said was a 150 percent increase in service and support animals — pets, often dogs, that accompany people with disabilities — carried onboard since 2015.… Delta said that it flies some 700 service animals a day. Among them, customers have attempted to fly with comfort turkeys, gliding possums, snakes, spiders, and other unusual pets.”
    Fresh from an unsavory incident with an “emotional support” peacock incident, United Airlines has followed Delta’s lead and set stricter rules for emotional support animals. United’s rules also took effect March 1, 2018.
    So, to the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service and emotional support animals.
    Source:
    cnbc.com