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


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#1 HaileyRay812

 
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Posted 10 August 2011 - 03:21 PM

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).
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#2 chrissygirlca

 
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Posted 10 August 2011 - 04:48 PM

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.
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#3 yolo

 
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Posted 10 August 2011 - 05:02 PM

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.
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#4 Takala

 
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Posted 10 August 2011 - 06:33 PM

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 $$$.
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#5 Jenniferxgfx

 
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Posted 10 August 2011 - 08:48 PM

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.
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glutenfree since 6/2011. sick for 30 years.

borderline blood test, negative biopsy.

SEVERELY sensitive celiac with DH. sensitive to contact and ingestion.

asthma (was severe; improved exponentially after 6/11)

spina bifida & childhood SCI at L4/L5 (possibly complicated by weak bones)

countless fractures and infections.

i once listed over 100 symptoms or conditions that improved or were eliminated after 6/11.

very vegan. and, of course, i've also discovered some other food allergies.


#6 butterfl8

 
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Posted 11 August 2011 - 08:00 AM

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
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--David Sedaris

#7 domesticactivist

 
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Posted 11 August 2011 - 08:15 AM

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.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#8 HaileyRay812

 
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Posted 11 August 2011 - 12:09 PM

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!
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#9 Bubba's Mom

 
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Posted 11 August 2011 - 12:16 PM

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.
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#10 Austin Guy

 
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Posted 11 August 2011 - 12:17 PM

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.
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Self-diagnosed gluten intolerant May 10, 2011 after going gluten free May 8.
Allergic to cat dander, salmon, nuts, lots of airborne pollens and mold.
Soy intolerance August 2011
Dairy and egg intolerance November 2011
Peanuts 2013
Titanium dioxide June, 2014

Bisphenol-A August, 2014.


#11 cyberprof

 
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Posted 11 August 2011 - 12:36 PM

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.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#12 notme!

 
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Posted 11 August 2011 - 12:59 PM

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! :D 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 :)
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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

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#13 a1956chill

 
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Posted 11 August 2011 - 03:06 PM

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.
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#14 melikamaui

 
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Posted 11 August 2011 - 05:31 PM

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. :D Facebook is a wonderful way to help educate others.
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#15 yolo

 
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Posted 11 August 2011 - 05:53 PM

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. :D Facebook is a wonderful way to help educate others.



I'll second that thought!!
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!




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