Is Anyone Else Just Angry That Drs Missed Celiac For So Many Years?

[HaileyRay812]

I am not sure if anyone else has felt like this, but has anyone just been flat out ANGRY once they realized their struggles their whole life are probably due to celiac??? I went to the pediatrican monthly growing up (not an exaggeration) for sinus infections, drs told my mom they thought I waas depressed. My mom said that when I was young, I constantly had a stomach ache and was so tired (which I remember as well). Apparently I was a crazy, hyper-active toddler that never slept and wanted to eat sugar all of the time, and I feel like my quality of life has slowly deteriorated as I have gotten older (I am now 26). I used to accel at high school and in college, my grades literally got worse every semester I was there. I have always had lots of anxiety and depression which lead to an eating disorder in high school. I had complications in my pregnancy with my oldest (IUGR) and then had twins two years later in which I suffered extreme, dabilitating fatigue during my pregnancy. My oldest has had severe behavioral and sleep problems and I finally figured out the gluten link and she has been feeling so much better and her vocabulary and weight have both increased since taking her off gluten. My mom has been depressed and just "sick" most of my life. Always had severe allergies and asthma and would sometimes hardly be able to get out of bed. My brother is a college athlete and is 22 years old and I have seen his struggles over the last several years. He has always had HORRENDOUS asthma and allergies as well. He got the results back from a testosterone test earlier today. His numbers were at 240 and the average testosterone level for men ages 85-100 is 375. The average for his age is 700. I had testing done recently (not for celiac) and my calcium, potassium, megnesium, and iron levels were incredibly low. The nurses said they had never seen anyone my age with such terrible testing results. My 15 month old's belly has always looked like a balloon - so bloated!!!! I took her off gluten and in the last week her stomach is half fo the size that it was before.

I have been told that they are pretty certain my testing will come out positive and I am pretty sure my brother, mom, daughters, and possibly my son have it as well. I don't even see how these people call themselves doctors. I am so angry I can't see straight. I am sure this is extreme, but I feel like doctors honestly just need to lose their licenses over things like this. I was given antibiotics over and over again which was horrible for me, and noone ever looked for an underlying cause. I am devastated for my poor brother who has worked his brains out to get to where he is at and struggled so much and never realized his struggles were most likely simply health issues. I am ANGRY (which is very unlike me).

[chrissygirlca]

I would get stomach flu like or food poisioning symptoms for weeks/ a month at a time on and off always have headaches tired always doing different tests. My doctor alaways said it was stress and that it was a virus that it will go away i just have to eat rice bread and banannas. For 26 years of my life ive been complaining to him and he told me that people can have a problem with believing things are wrong with them when if fact nothing is wrong. So0 after missing my 26th birthday party because i was sick to my stomach in the bathroom all night after eating cake. And having to pull aside 5 times on the way to and back of going out anywhere i finally told the doctor to do the camera test. It was not fun either the interven they gave me did not put me to sleep and i was awake when the put the camera inside me. I started gagging on it and they had to drug me again. When i woke up she just said okay so we fiigured out that you just have to stop eating wheat you can go home now. I was like what the heck? i never knew anything about it before i never knew what it was and after going through that horrible test they told me that. I was soo mad. Like all the years of going to different dentists for loss of enamel. Losing clumps and clumps of hair. Getting sick all the time when going out. The hangovers that last for days after not even so much drinking! i wish i knew a long time ago it would have made things so much easier and i would not have gotten depressed after finding out! The worst part was that i would tell him something was wrong with me and for year sit was always just stress makes me so mad.

[YoloGx]

I so l hear you.

The thing is is that doctors and most of their supporting crew are not taught much if anything about nutrition--or diseases associated with it. This begins in college.

I started to take a physiology class at the local community college, and on the first day the teacher said not to do any projects on things like Beri Beri since we don't get conditions like that in this country. Thing was that I had just discovered I had Beri Beri--due in large part to heredity and probably worse because of celiac. I was low on vitamin B-1 which ain't supposed to happen here. Well I doubt the good teacher would be open to research on gluten intolerance or celiac either.

My doctor was all hot on the fact I had a heart condition, however after I started taking co-enzyme B vitamins and nattokinase and then went off all trace gluten my heart condition went away.

Ironically I was originally diagnosed with celiac sprue as an infant when I stopped growing and got pneumonia when introduced to grains. But back then the docs all thought one could "grow out" of it. So later when I was re-introduced to gluten I did continue to grow so they thought I was OK. They just didn't notice my peeling fingernails, hair falling out, dental carries, bruising, constantly getting sick and staying that way longer than anyone else, spacing out, seeing and hearing things and people who weren't there, problems with contracting urinary infections, pneumonia and bronchitis, migraines, anxiety attacks, poor memory, bad teeth etc.

The fact I survived is a testament to my body's resilience. Now I don't generally get ill unless I get glutened too frequently--and I have discovered I actually have a calm disposition and an excellent memory overall.

It sounds like you too, like many of us here, really went through the ringer. Its natural to be upset about it. I mean after all this is our lives we are talking about and how many missed years and thus missed opportunities??

Now here I am 62 years old feeling better than I did in my early twenties, and in many ways better than I felt when I was a kid. Its Not all bad to feel good now (actually I celebrate that fact), but honestly I would have liked feeling this way back then.

Gradually more awareness about gluten intolerance/celiac and other associated conditions is improving. But for many it won't happen until another generation of doctors and teachers are in charge.

Our job then is to take care of ourselves, and inform others when appropriate. Unfortunately for many they just aren't open to the information, either the docs or the patients themselves. When that happens we just have to move on and find others who are more open and supportive.

Gradually our situation will become more and more accepted. Give it time. Already there have been huge strides in just the last 5 years.

[Takala]

Yes, but try to channel the anger in a good way.

You're still relatively young compared to many of us.

Just in case, if your testing still comes out "negative," (it happens...) stick with the gluten free diet anyway. The doctors will be more than happy to run test after test according to what the insurance companies will pay for, and I don't think the insurance companies are up to date on the symptoms of celiac or gluten intolerance at all. And the pharma companies love those fibro, generalized anxiety and low grade chronic discomfort nerve pain and heartburn diagnosises - more $$$.

[Jenniferxgfx]

I have so much anger, it sometimes feels like it's eating me up inside. I'd love some advice on how to channel it more productively!

I started seeing a pain psych to deal with my anger at the medical field. It took them 10 years to take my chronic back pain seriously (it turned out I have a spinal injury!), and now I find out celiac is the reason I've been sick since childhood? The reason I lost my career? The reason my back can't be fixed? The anger is overehelming sometimes. And the celiac thing? I tested negative, too, so I had to figure it out on my own. All that wasted time and money and suffering. My symptoms were blamed on my body size, my gender, my activity level... I've been so abused by the medical field, I now have post-traumatic stress disorder. Thankfully, my anxiety levels are easier to control without gluten, so I'm starting to recover from the PTSD, plus my physical health is improving exponentially and it hasn't been 2 months yet!

But the anger... Oh, man, the anger.

When I told this to the psych, she passed it off as "that's just out culture" and "that's just how doctors are." That's not good enough. Doctors are supposed to do no harm. This is the opposite. This is harm.

[butterfl8]

The thing is, that now you have an answer, and a solution. All you have to do is change your diet, and so many problems will start to go away. So yes, feel angry, by all means, but don't let that be your sole focus. Concentrate on the future you, the you who can feel so much better, just by changing how you eat! After all of the horrible diagnoses that we've either gotten or considered, we find out that we have celiac. And this is SO EASY to treat! We are lucky! I'm not trying to dismiss your anger. I'm saying that in addition, look towards the future, where all the pain, misery and everything else can be taken care of. And the diet seems REALLY hard to begin with. At least, it did for me. Now, becuase I am very sensitive, I don't bother buying processed, or replacement foods. So grocery shopping involves a minimum of label reading! I buy a lot of fruits, veggies, meats, and some dairy products.

So, as is often said here, Welcome to the greatest club you never wanted to join!

-Daisy

[domesticactivist]

The anger is justified. Not only did those people screw up your health, you also need to grieve what was lost. Living with anger indefinitely will not serve you well, but experiencing it as a part if your grief, then channeling it into positive action could actually help you heal and help spare others the trauma and health issues you experienced.

[HaileyRay812]

I am glad to know I am not the only one that feels angry. I am lucky that I am young, and lucky I am aware for my children who I also believe have celiac. I just feel this disease can ruin lives and wish drs would make a better effort to diagnose this disease!

[Bubba's Mom]

I'm angry too! I can't remember a time I felt really healthy.

I've been misdiagnosed and given meds for a variety of symptoms, but never DXed correctly. I've had different Dr.s and they all said I needed anxiety meds, sleep meds, stomach acid meds, asthma meds, allergy shots and most recently..."just eat Tums".

I've had several things like skin cancer, and colon cancer that "they usually see in much older people".

I have all sorts of things wrong with me. My joints ache, I keep getting dizzy, am getting chest pains, anxiety is getting worse, can't sleep, have NO appetite, still have pain after eating, most of which I haven't told the Dr. because they don't seem to care! I've been gluten-free for about 6 weeks and not feeling much better. In fact, I feel like I'm going backwards at times. I don't know what to eat for sure. I have villi damage. Is what I'm eating even being absorbed? The specialist was no help..she just DXed me and said "don't eat gluten".

I've heard that I'm supposed to "feel so much better" off gluten, but so far..nope!

I look back to all that I've missed in life..and still am and I feel cheated.

I'm 54..feel like 84.

[Austin Guy]

My dad is a doctor and completely missed it. I talked with a girl right out of nursing school recently and she was shocked about everything she learned from me about gluten intolerance. I think most of the medical field still is fairly clueless and that is an absolute shame.

In my 40s I started seeing therapists and psychiatrists for ADD and depression and gluten NEVER came up. I'm not angry at anyone, but disappointed that I probably missed out on a lot because of gluten-induced physical and emotional/mental health challenges. The last 20 years is mostly a blur.

Now my challenge is to make my daughters and their cousins aware because some of them are bound to be intolerant and just don't know it.

[cyberprof]

I am glad to know I am not the only one that feels angry. I am lucky that I am young, and lucky I am aware for my children who I also believe have celiac. I just feel this disease can ruin lives and wish drs would make a better effort to diagnose this disease!

HaileyRay, I too have a long story. Many doctors and many years - maybe 30 maybe more of missed diagnoses. I hope you, your kids, mom and brother all get healthy soon.

I was soooo happy to be diagnosed that I didn't get angry until later. Now I channel my anger into helping others - either through getting awareness up among people I meet or giving advice here, or developing recipes for good food. I've offered my services to strangers and met up with some celiac newbies (strangers) at the local Whole Foods to teach them how to shop and cook. I lend my cookbooks to new celiacs.

My next project is to see if I can get our local foodbank to be sensitive to the needs of celiac/gluten-intolerants and hopefully get them to have a gluten-free "shelf" or giveaway program.

[notme]

be happy that you are still relatively young! i was 47 years old and had been suffering for 25 years when they finally got it right - and starving to death, literally. i missed my kids' whole childhood and beyond - sick all the time, miscarriage, had to quit college because of a 'mystery' hospitalization, etc., etc., - not to mention all the $$$$$$$ spent on doctors and meds!

i still think it was a lucky guess that i was diagnosed with celiac AT ALL! because the medical field is so underinformed/ignorant.

that being said: i MIGHT have NEVER been diagnosed properly, and still be suffering with all that krap. so, yeah, alot of time lost - but not anymore a year ago i was pretty hopeless that anyone would ever figure out what my problem was. so, be grateful! also, you are lucky that your family members are receptive to the idea that they, too, could benefit from being gluten-free. my sibs are both prime suspects for celiac but insist that i am the only one who got the gene. my son (who also has type 1 diabetes - related to celiac) is pretty sure he should be gluten-free but he is not 'suffering enough' to skip sugar AND gluten - so it continues to do him damage. won't listen (not that any of my kids listen to mom LOL)

i can *almost* throw a baseball again. working on being able to play catch with the grandkids that makes me happpppyyyyy

ps - stressing will make you heal slower, just sayin' - so relax and enjoy your new life!! best of luck

[cahill]

Anger, feeling ,accepting and working thur that anger is IMHO an important part of healing the emotional scars that many of us have.

I was about 12 when the first signs of celiac's (that I remember) appeared . I was 54 when diagnosed. 40+ years of doctors misdiagnosing ,mistreating,unnecessary surgery,being call a hypochondriac ect.. . Was I angry OH YEAH !!! But I honestly feel that feeling that anger and working thru it is a necessary step in my emotional recovery . Celiac's not only damaged my body,it also played havoc with my mental and emotional well being.

Feel the anger,understand it and accept it ,deal with it and eventually let it go. (well most of it anyway )Dont let that anger keep you from living your life to the ABSOLUTE fullest possible.

[melikamaui]

It is my personal belief that good nutrition is the key to everything. The key to health, happiness, longevity, and a good life. The fact that it is BARELY taught in medical school is a joke on the entire human race. So it does not surprise me that the medical establishment would over look a disease like celiac disease. Ask yourself, before your diagnosis, when was the last time you were in the doctor's office and they asked you what you eat? When was the last time they inquired about your nutrition? It's reprehensible. So, yes, I'm angry. But I channel it into positivity. I use that anger to spread the word about celiac disease and help people get better informed. I can tell you this - every single person I know, and every single person that I have any internet contact with knows about celiac disease! I make sure of it. Facebook is a wonderful way to help educate others.

[YoloGx]

It is my personal belief that good nutrition is the key to everything. The key to health, happiness, longevity, and a good life. The fact that it is BARELY taught in medical school is a joke on the entire human race. So it does not surprise me that the medical establishment would over look a disease like celiac disease. Ask yourself, before your diagnosis, when was the last time you were in the doctor's office and they asked you what you eat? When was the last time they inquired about your nutrition? It's reprehensible. So, yes, I'm angry. But I channel it into positivity. I use that anger to spread the word about celiac disease and help people get better informed. I can tell you this - every single person I know, and every single person that I have any internet contact with knows about celiac disease! I make sure of it. Facebook is a wonderful way to help educate others.

I'll second that thought!!

[T.H.]

The anger is sometimes hard to deal with, but I think it helps to know that it's perfectly normal, because someone screwed up, and it screwed YOU.

For myself, I was undiagnosed for about 20 years, and I'm not angry I wasn't diagnosed. they didn't even know the symptoms I had COULD be celiac disease back then, because I have atypical symptoms.

But the fact that a person gets sick constantly, in multiple systems in their body, and no one even LOOKS for an underlying cause? THAT makes me angry. That's just plain stupid. And I know it's the way many doctors are trained up. I don't care. It's STILL plain stupid. Just because we're taught a thing doesn't mean it's fine to turn off our brains and follow it blindly.

And the fact that negative tests for the disease flavor of the day would instantly get me a 'it's probably stress' diagnosis? THAT makes me furious.

The fact that my daughter was heading down the same road, with the same danged attitude, makes me even more furious.

Some of the anger, I've just had to let go. Nothing can be done now to change what has happened. But I'm doing my best to help make sure it happens less often. I don't take any crap from doctors anymore, because I'm sick of it, so I'm standing up for myself a lot more these days.

Every doctor I can find that misdiagnosed me, I have sent, or am going to send, a letter telling them exactly what happened, and how they misdiagnosed, and - if necessary - how utter crap they managed to make me feel with their attitude.

When I see people who MIGHT have celiac disease, especially if their health comes up and they are talking about issues and the doctor doesn't know what's wrong, etc.... I speak the heck up and mention this disease, because for a few of them, it might actually help.

Like at the grocery store a few days ago, gentleman in front of me happens to mention his little 2 year old, who was hospitalized for pneumonia. Talks about how she's always sick, all the time, skinny, and the doctors say her illnesses are just due to their having other kids bring colds home, even though those kids aren't having the same issues.

So I politely ask him if they've ever looked at celiac disease, or had it suggested as a possible cause of constant illness. He's never heard of it. I mention what it is, what the typical symptoms are, how they manifest, and he looks at me with this stunned look and says, "My baby has had tummy pain and bloating and bowel problems ever since we introduced solid foods. The docs won't do anything about it and said it was just something that would 'pass' as she got older." Then he got out his notebook and asked for the spelling for celiac disease so he could go look it up on-line as soon as he got home.

It's stuff like that which keep me still angry, because it's obvious the docs aren't looking for jack to help this little baby. But at the same time, it's been a way for me to work through it. Just because I was sick due to ignorant doctors doesn't mean other people have to remain that way. I suppose maybe in some childish way, I'm thumbing my nose at the doctors' idiocy and helping someone else at the same time.

I've had a number of people that I've mentioned the disease to come back to inform me that they did, indeed, have celiac disease. The few that got help made all the difference for me, or at least for my own mental health.

[YoloGx]

Hi Shauna, kudos to you and to all of us who have similar impulses. For every person "saved" by our good words, there are many more that benefit. Not everyone listens of course, but enough do to make a difference.

Certainly my boyfriend is infinitely grateful that he no longer has ADD or migraines, 2 conditions that his severe gluten intolerance brought on. And his doctor's response? Disbelief.

All I can do is shake my head. I have had so much difficulty with doctors--the AMA and alternative doctors too. I usually am the one that has to teach the specialist now. It is the times.

In Europe I understand a lot more is known generally by everyone about this condition. Its just that in the US we are in so much denial about apple pie, wonderbread, pizza, birthday cake and mcDonald's issues. Seriously. It seems a national disbelief/inability to understand such basic ideas like the food you eat can actually affect your health. Jeeze! Plus its in everything--even paint, fixall and drywall!!

Meanwhile, speaking of my boyfriend, he's used Facebook to spread the word to his extended family, many of whom are seeing the connection and really being helped. Not everyone (his daughter the nurse of course is skeptical), as said, but enough to make a real difference. My family is less open, but I do try to spread the word when I can to help other people I know. And many do appreciate it, whereas of course others look at me like I am a little bonkers, but that can't be helped!

[jebby]

I am a doctor and I have celiac disease which was just diagnosed last year. When I was in medical school 10 years ago, I had one lecture on celiac and we had a patient with celiac spend 45 minutes describing her symptoms and what it was like to be gluten free. She had all of the typical GI symptoms. There was not much awareness in the medical community 10 years ago about all of the atypical symptoms associated with celiac as research was truly lacking. And I am a "young" doctor, I am sure that those who trained 10 and 20 years before me had even less exposure to celiac disease.

After I was diagnosed last year I was active on an on-line physician forum called Sermo. It is actually a lot like this board, only MDs post difficult cases and diagnoses and look for advice. There were countless cases of middle aged patients who sounded like they could have celiac, for example, people with joint pains, brain fog, IBS, losing hair, etc. Everytime I came across a case which sounded suspicious for celiac, I would suggest that a celiac panel be run. And everytime I would be told that there was no way that the patient in question could have celiac. Non of the docs believed in non-Celiac gluten intolerance either. I am not trying to throw all MDs under the bus, but after my experience on Sermo, I am pretty convinced that Celiac disease will not be at the forefront of the minds of many "older" doctors. It is up to all of us to get the word out. I talk about my diagnosis to as many people as I can at the hospital I work at to get the word out. I was angry at first too....

[jebby]

One additional observation from the MD posts on Sermo was that there is a generalized belief that it is impossible for a patient to actually follow through with a gluten free diet. I had one MD actual comment to me that I "probably eat gluten all day long without realizing it." I offered him to come and spend a day with me and test my fruit, plain chicken breast, and roasted vegetables for gluten and he declined. I guess that I am still angrier than I thought I was!

[come dance with me]

I feel for you. I'm actually upset that mine was 7 before I knew she was coeliac so I can't even fathom how you must feel!

[YoloGx]

One additional observation from the MD posts on Sermo was that there is a generalized belief that it is impossible for a patient to actually follow through with a gluten free diet. I had one MD actual comment to me that I "probably eat gluten all day long without realizing it." I offered him to come and spend a day with me and test my fruit, plain chicken breast, and roasted vegetables for gluten and he declined. I guess that I am still angrier than I thought I was!

There is so much that needs to change, that is obvious. Its actually heroic of you to speak out against such a wall of misunderstanding. More docs and nurses however do need to do so if anything is going to change for folks like us. We (i.e., those of the general public that has celiac and severe gluten intolerance) need the medical establishment to be on our side, not against it. Do you suppose that it would be possible to create a forum for doctors and nurses who have or know someone personally who has severe gluten intolerance or celiac? It could make a world of difference even if it might feel like you are out in the wilderness at first...

[sb2178]

One additional observation from the MD posts on Sermo was that there is a generalized belief that it is impossible for a patient to actually follow through with a gluten free diet. I had one MD actual comment to me that I "probably eat gluten all day long without realizing it." I offered him to come and spend a day with me and test my fruit, plain chicken breast, and roasted vegetables for gluten and he declined. I guess that I am still angrier than I thought I was!

Add to that: there's the problem of the tests coming back negative! Even when they think to test you. I first had a GI test me for celiac in 2003 (ish?). negative. 2010, round #1, negative. 2010, round #2, positive, but barely. Fortunately, they tossed me on an elimination diet too, so that cemented it.

That annoys me. If the first round of tests had been better, I would have not spent years on and off various antacids, dealing with nutritional deficiencies, etc. I also wonder about my relatives with IBS (all of whom have now had some form of a celiac panel, although not necessarily a complete one) who tested negative. I haven't gotten any of them to do a good elimination diet. My dad actually did one but... guess what? He was drinking beer the whole time. Doh. Would better testing reveal earlier cases? Why do our tests only diagnose someone who is in serious danger of major nutritional deficiencies, with destroyed intestines? Why aren't we catching this as early as possible??

Anyway, be glad it been discovered even as you direct your wrath toward productivity. First step toward health and all that.

[shadowicewolf]

yes!

I've had issues all my life.

When i was eight calcium would not lay right on my heel on my left food. It ended up being all jagged and such and i couldn't walk on it for a few months.

When i was 12 my D issues started and slowly got worse and worse until i was 20 where it became a daily thing (doctors wrote this off as "stress")

Around the same time i had to use the bathroom frequently (say every 30min to an hour) due to urgency (this has since stopped)

Not to mention all of the damn colds and such i had when i was younger. I was the sickest kid in school!

I gained so much weight due to gluten (at my highest i was ~188lbs and i'm only 5'4'').

Then i had a nurse practioner mention it (because she wasn't sure what the heck was wrong with me) and decide to test me for it "just in case". Lo and behold look what it was

[lcarter]

Yes, there have been times when I was angry, too. I have had digestive problems since birth [1942] with classic-textbook like celiac disease symptoms and still no doctor ever suggested celiac - even 3 gastro's I saw over the years. It is maddening! Because of my experience, I don't fully trust doctors concerning this disease, even now. The only way to protect yourself is to keep up with the latest medical research and share the articles with any doctor who seems at all interested. Anyway, we didn't figure out the connection for me until about 6 yrs ago, following a couple of emergency room visits with intestines almost swollen shut. Both episodes were very painful + really scary. Since starting the gluten-free diet there has been remarkable reversal of symptoms. Of course, since no one caught it earlier, there probably will always be some residual problems...like significant osteoporosis. I am just so thankful for the internet and this + other celiac sites so that we can keep informed, educate those who need to know, and support one another. It's so nice to know we are not alone!

[melikamaui]

One additional observation from the MD posts on Sermo was that there is a generalized belief that it is impossible for a patient to actually follow through with a gluten free diet. I had one MD actual comment to me that I "probably eat gluten all day long without realizing it." I offered him to come and spend a day with me and test my fruit, plain chicken breast, and roasted vegetables for gluten and he declined. I guess that I am still angrier than I thought I was!

Our pediatric gastroenterologist basically said the same thing to me. That it was "impossible" to follow a gluten-free diet. I can't believe how many people, including doctors, have so little faith in our abilities to educate ourselves about what we put into our bodies. Thank you for being a physician that stands up for us!