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


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#16 T.H.

 
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Posted 11 August 2011 - 06:10 PM

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.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


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#17 yolo

 
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Posted 11 August 2011 - 06:27 PM

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!
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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!

#18 jebby

 
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Posted 11 August 2011 - 06:29 PM

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....
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#19 jebby

 
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Posted 11 August 2011 - 06:42 PM

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!
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#20 come dance with me

 
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Posted 11 August 2011 - 07:03 PM

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!
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Lord please give me patience, because if you give me strength, I may just beat the living crap out of someone...

#21 yolo

 
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Posted 11 August 2011 - 07:21 PM

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...
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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!

#22 sb2178

 
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Posted 11 August 2011 - 10:59 PM

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.
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#23 shadowicewolf

 
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Posted 12 August 2011 - 12:10 AM

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 <_<
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#24 lcarter

 
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Posted 12 August 2011 - 10:04 AM

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!
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Gluten + Dairy + Fructose Intolerant, Osteoporosis, Hasi's/ Hypothyroid, Sjogren's, Migraine Deviate with Visual Aura, Peripheral Neuropathy, DQ2 and DQ8 negative [Prometheus Labs]

#25 melikamaui

 
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Posted 12 August 2011 - 12:26 PM

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!
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#26 Takala

 
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Posted 12 August 2011 - 01:39 PM

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!


_______________

And this is a prisoner of his culture, that does not understand that people who can exert control over their immediate environment, (such as growing,gathering,preparing their own food that makes them feel well) are going to seek out success if they have the support of others that see the benefit of that success. And he doesn't appear to have a nurturing instinct towards younger children.

I wonder what he says to his other patients with food allergies, diabetes, alcoholism, etc.

Oh, that's right, he doesn't have any. They've expired. :blink:
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#27 yolo

 
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Posted 12 August 2011 - 01:42 PM

Icarter: "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 too have had celiac all my life before I discovered what was going on. This was a good 50 years or more...if you count the first 4 years I was off gluten as an infant and young child. I was so bad that my fingernails were flaky and my teeth never hardened until recently. Now I no longer get carries! Think of that. Gums are much improved too.

How I have done it is by taking nattokinase and l-glutamine as well as enterically coated probiotics on an empty stomach. This goes a long ways towards healing the villi and thus their absorption of minerals and vitamins. I also take E-zorb--its 90% absorpable calcium that the Chinese invented. Check it out on the Internet. It has made a huge difference for me. I also take liquid sea minerals, zinc, mag. citrate, and silicon drops (this last for my otherwise perilous joints--it builds both bone and cartiledge). Occasionally I also take plain cod liver oil to get the extra D I need plus Omega 3's.

Doing all this my osteoporosis has effectively gone away--though it seems I have to keep taking these supplements to keep it that way. Now I can lift small weights and do modified push ups and sit ups without harming myself. Try it and see what you think!

Of course no doctor suggested this to me. I had to figure it out on my own. Again thank god for the Internet!!

Am also now trying an experimental laser allergy relief treatment. Its too early to tell if it will help or not. If not, I'll get my money back, so how can I lose?? Am keeping my fingers crossed it will help me overcome some of my multiple food sensitivities.

Bea
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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!

#28 yolo

 
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Posted 12 August 2011 - 01:48 PM

_______________

I wonder what he says to his other patients with food allergies, diabetes, alcoholism, etc.

Oh, that's right, he doesn't have any. They've expired.

LOL! now that's some dark humor! LIke my brother says, you only laugh when it hurts...
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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!

#29 kellynolan82

 
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Posted 14 August 2011 - 04:49 AM

Yes I am angry too. I never had a biopsy though... :(
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