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Still Angry Sometimes After 2 Years


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#1 sandsurfgirl

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Posted 26 November 2011 - 07:54 PM

I was talked out of testing by two different GI docs who sweetly reassured me there was no way I had celiac with big smiles. They ruined 7 years of my life as I got sicker and sicker thinking I might die and not knowing what was wrong with me. When I was finally diagnosed I was so sick it took me 6 months to heal.

I have worked through so much anger over this but I know I still have some that hasn't gone away because when I read doctor stories on here sometimes I get enraged.

Do these doctors go to Medical Clown College?? Are they smoking crack?

The things I see on here are just digusting. Telling people they outgrew celiac. Telling people with positive blood tests that they don't have it. Telling people who are positive for celiac that they can eat gluten once in awhile.

When is it going to stop? When will the gastroenterology profession get a clue and stop hurting and killing people?

Thanks for letting me rant. I didn't realize I still had that much anger tonight until I read the thread where a doctor said that celiacs usually don't have abdominal pain and I just lost it. WTF?
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

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#2 beebs

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Posted 26 November 2011 - 08:19 PM

I have anger too, I was told there was no way I could have celiac because I didn't have the genes, I only found out a few months ago that the test was never done :angry: And I do have the genes - but I have already gone gluten free and my symptoms are so severe I can't ever eat gluten again. My kids Paed GI (who is a celiac specialist) says there is no way in heck that I don't have it, but that I'll never get a diagnosis. Not to mention happily eating gluten all of that time when they said there was no way it could be and having it trigger other autoimmune diseases in me. So mad! Don't know if I'll ever be able to let it go.
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HLA DQ8, gluten-free since January 2011

#3 Di2011

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Posted 26 November 2011 - 08:56 PM

I wonder what, collectively, celiac and gluten sensitive people could do to change the situation? It will be the only way to get beyond these kind of anger/sadness responses we have to reading these horrible stories.
If only we could collectively petition or march on Parliament/White House/Medical schools/AGRICULTURE MINISTRIES etc and demand action!
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#4 sandsurfgirl

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Posted 26 November 2011 - 10:39 PM

I wonder what, collectively, celiac and gluten sensitive people could do to change the situation? It will be the only way to get beyond these kind of anger/sadness responses we have to reading these horrible stories.
If only we could collectively petition or march on Parliament/White House/Medical schools/AGRICULTURE MINISTRIES etc and demand action!


I wonder about that too. Where do you start? There has to be an association of gastrenterologists, but many of these docs are old school and the old dogs aren't going to learn new tricks.

The stories we have are downright criminal. These people should lose their licenses. I am not the suing type. I'm always the one who says don't sue but I'm wondering even that. Massive mallpractice suits to scores of misdiagnosed celiacs? I'm sure that would be impossible to organize but when I'm angry it feels good think about it.

I finally after two years was able to write a letter to those GI docs and I'm sending it on Monday. Before now I wouldn't have been coherent and I couldn't have kept he cursing out of it.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#5 Di2011

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Posted 27 November 2011 - 01:37 AM

I also think online seems to be the place to make people take notice.
I think if allergy/intolerant/celiacs (especially those in the US) got together on facebook (I have yet to find any substantial groups etc but I am a novice) and started making noices on youtube etc there could be something "heard".

There needs to be some serious research into the range of gluten medical issues. But unfortunately I don't think there ever will be because who/why would anyone pay it for medical conditions that in essence means all you need to do is avoid glutens. In theory if we could all be tested at birth/early childhood solid eating stage, there would be no meds and a compromised grain industry.
Research into the economic impact of gluten related health costs impacting public monies (and it would have to be big $$$ significant) is the only reason governments would sponsor serious and comprehensive research.

I've read a lot about our Australian lab working on celiac "cure" drugs so you can eat gluten. The more I learn and contemplate I wonder if this is really a good thing. I don't want to start a big argument-fest on this topic. Just wonder what is really the best for us people.

Like I said - don't want to create any cranky debate .. just putting thoughts out there.
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#6 Di2011

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Posted 27 November 2011 - 01:40 AM

Sandsurfgirl,
Good on you! Write that letter. What is the worst that can happen? They don't respond.. Won't be a great surprise will it!

You should copy these and send to the local medical board.
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#7 Roda

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Posted 27 November 2011 - 01:41 AM

What bothers me is that I am performing scans, etc on patients in the hospital and when I review their relevant history, red flags go up. I see so many with IBS, various autoimmune conditions, and related symptoms that makes me want to scream at the top of my lungs "THIS PATIENT NEEDS TESTED FOR CELIAC!" Some of these patients have been suffering for years. I consider myself lucky because my main complaint pre diagnosis was the unexplained anemia/iron deficiency. I did have at one point horrible reflux, but in the grand scheeme of things my 2.5 years before diagnosis is nothing compared to some of these patients. I have to be careful what I say. Occasionally I will say something if things come up casually, but I really wish I could do more. One instance stands out to me was a young girl, early 20's that had been having symptoms for about 10 years with numerous visits to the doctor and ED. I was talking to her and asked questions about her being sick. I did find out she had been blood tested and scoped for celiac. She said her blood tests were high positive but her scope negative and they told her she didn't have it. I could feel the anger building up. I talked to her at length and hopefully convinced her to go gluten free so she could start feeling better and get her life back. I even told her if she needed anything to call the hospital on third shift and ask for me. This is where my anger is.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#8 Di2011

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Posted 27 November 2011 - 02:42 AM

OMG I don't know how you do it Roda. You are a brave soul. We need more of you in the medical world.
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#9 Roda

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Posted 27 November 2011 - 03:51 AM

OMG I don't know how you do it Roda. You are a brave soul. We need more of you in the medical world.

Thanks. For the most part my colleges don't know much about celiac. On the occasion that we have a celiac patient staying at our hospital, the nurses frequently call me and ask me what in the world can they eat(after hours). I have had some of the ED personel refer people to talk to me. One in particular I was emailing through work(she worked at the hospital too). She was so sick having misc. health problems. They brushed off her positive celiac blood work when she was having other problems. Last I knew she wasn't gluten free anymore and very sick.

I even see symptoms in my coworkers. I wonder if I just have celiac on the brain. :P I will hear about their health problems. They all know I have celiac and are great guinea pigs for my food experimentation, but don't see the connection to themselves. They feel bad for me for some reason. I guess it's because they are always cooking and eating and I can't have it. I don't feel sorry for myself at all. I feel sorry for everyone else!

Actually it feels good to get this off my chest. I have been thinking a lot about it lately. I feel I need to do something, but I am not in a position to do so at work. I've still yet to figure out what I'm supposed/meant to do.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#10 Di2011

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Posted 27 November 2011 - 04:31 AM

More OMG OMG OMG ..
After my six month learning journey I am recently starting to "see" people and want to tell them about gluten intolerance/sensitivity. IT IS HARD to bite your tongue. My boss is a great supporter having seen what I've been through. We've know each other for many years. I really really want to talk to him about his crazy back scratching ( It is incredibly itchy from what his back against any scratch surface often indicates). And it is exactly as I feel (less so gluten free). He has something like my Rosacea with nothing of the usual culprites to attribute it to.

Sorry if you have previously but would you mind giving us details about your career and gluten-problem/free experiences?
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#11 Roda

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Posted 27 November 2011 - 05:43 AM

More OMG OMG OMG ..
After my six month learning journey I am recently starting to "see" people and want to tell them about gluten intolerance/sensitivity. IT IS HARD to bite your tongue. My boss is a great supporter having seen what I've been through. We've know each other for many years. I really really want to talk to him about his crazy back scratching ( It is incredibly itchy from what his back against any scratch surface often indicates). And it is exactly as I feel (less so gluten free). He has something like my Rosacea with nothing of the usual culprites to attribute it to.

Sorry if you have previously but would you mind giving us details about your career and gluten-problem/free experiences?

I have been working as a registerd X-ray/CT technologist for the past 17 years. I have mostly worked in hospital settings. I used to do Mammography before I moved to my current location 8 years ago. I now work nights doing x-ray, CT and lower extremity venous ultrasounds. I would like to go back to school for ultrasound, so I'm not limited to just one type of exam. However, I don't know when/if that will happen. Anything body related and medical stuff intrestes me. I'm never content taking a doctor's word as the final answer without doing my own research. I like to question things. My own research is what has gotten me to where my children and I are today.

As for my gluten issues/gluten free journey, I will try to keep it short.

-Chronic constipation issues as a baby till around age five. Off and on issues with it since then with intermittent bloating and gas pains(thought this was normal for me)
-2000 found out I had hypothyroid but wasn't treated with meds until three months prior to my third pregnancy. Found to have hashimoto's while pregnant with my first son. (had two miscarriages prior to this)
-12/04 my second son was born. He had colic, horrible reflux, and developed rashes. Had to eliminate all dairy, tree nuts, oats and rice. Ate a lot of meats, fruits, veggies. Felt GREAT! Breastfed him till he was 16 months old.
-2/06 had two extreme tachycardic episodes (over 180) Heart was found to be fine.
-12/06 Unrelenting fatigue/reflux almost all year. Saw PCP many times. Found to be anemic and prescribed iron. Told it was probably due being of childbearing age.
-2007 found an endocrinologist to manage my throid. Ferritin was rock bottom. Couldn't tolerate supps.
-5/2008 researched low feritin/iron deficiency/anemia and hashimoto's. I kept finding links to celiac. I was in denial
-9/2008 asked my endo for a blood test. Didn't get the full panel, just the IgA tTG. It was positive.
-10/2008 had my scope/biopsy and was positive. Went gluten free and saw quick relief of reflux and became "regular. Both my boys were tested and were negative.
-1/2010-8/2010 became symptomatic with reflux, steatorrhea, diarrhea. Gallbladder tests mostly normal. Had repeat scope and found alot of imflamation and a stomach ulcer.
-9/2010 To avoid steroids I went back to a very basic diet and started RX creon. I learned that I was reacting to gluten free oat cross contamination in products(already knew I couldn't eat the oats but didn't think about the CC). Symptoms resolved in three months and was able to stop the creon.
-11/2010 found out my youngest son had celiac with a positive IgA tTG no biopsy.
-8/11 Started oldest son on a gluten free trial due to his past medical history and symptoms. All testing is negative for him.

I've done pretty good this year, with a few bumps in the road and my kids are doing good as well. My youngest son has grown 4 inches since he went gluten free a year ago. My oldest son had gained 5 pounds just since Aug. and is starting to grow too. My symptoms have changed if I get CC. I used to get reflux, bloating and constipated. Now I get reflux, rash on buttocks(clears up in about a week), bloating, D and steatorrhea. My youngest son gets constipated and suffers major temper tantrums/emotional upset. Oldest son seems less sensitive, but he gets bloated, gas pains and constipation.

You'll have to pardon my grammer if there are mistakes. I just got off work. ;)
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#12 sandsurfgirl

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Posted 27 November 2011 - 10:24 AM

Roda that would be very hard, but you have power to mention it to people. It can't hurt if you tell a patient about your celiac disease and find a way to mention it to them. That's how I found out. The nurse had celiac at the ER and she said I sounded like her. She said ask the doc about it and when I did, a light bulb went on for him. He said "Yes! I think that's it!" He encouraged me to get tested by my doc and we ran the tests the next day. I went gluten free right after my blood test. I couldn't wait. I was too sick.

Your words can have power and you can save lives!
  • 0
Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#13 Roda

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Posted 27 November 2011 - 12:04 PM

Roda that would be very hard, but you have power to mention it to people. It can't hurt if you tell a patient about your celiac disease and find a way to mention it to them. That's how I found out. The nurse had celiac at the ER and she said I sounded like her. She said ask the doc about it and when I did, a light bulb went on for him. He said "Yes! I think that's it!" He encouraged me to get tested by my doc and we ran the tests the next day. I went gluten free right after my blood test. I couldn't wait. I was too sick.

Your words can have power and you can save lives!

That is sort of how I have gotten around the issue before. I'll start chit chatting with the patient and tell them I have celiac. Most people ask me then what it is so I tell them. I'll tell them it might be worth mentioning to their doctor to get at least blood tested. I also tell them they can get a lot of information from the internet and to read about it. I have even taken the time to write down ALL the proper tests for a couple of people who were interested.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#14 Katrala

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Posted 27 November 2011 - 12:08 PM

Yelling and screaming only makes us feel better - it doesn't go far with the medical community.

If someone has a positive blood test and a negative biopsy, they need to dig further within that information to find out more regarding the biopsy (standards of the doc to diagnose celiac, areas where biopsy were taken, etc.) If a person feels the biopsy was not done correctly and/or with the best doctor, have it repeated by a doctor that has experience with celiac.

I know emotions play a big role here - I myself had my positive blood test "forgotten about" by a nurse practitioner - and anger is a part of it.

Personally, if I had had a negative biopsy, I wouldn't have gone on a life-changing diet until I was 100% sure I needed to be on it. I would have went back on gluten and continued searching for an answer the moment the biopsy results came back negative. That's just me, of course.

While I fully acknowledge that doctors are more than capable of being wrong (and the best ones admit when they are and learn from their mistakes,) I also know that even the best doctors can get frustrated with self-diagnosis in general. I know someone who was diagnosed negative by both blood test and biopsy, but still went to the GI saying she was CERTAIN she had celiac disease and told the doctor that he/she was wrong.

I think one of the best things the celiac community can do is direct potential celiacs to doctors who have experience with the disease.
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#15 sandsurfgirl

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Posted 27 November 2011 - 12:59 PM

If someone has a positive blood test and a negative biopsy, they need to dig further within that information to find out more regarding the biopsy (standards of the doc to diagnose celiac, areas where biopsy were taken, etc.) If a person feels the biopsy was not done correctly and/or with the best doctor, have it repeated by a doctor that has experience with celiac.

Personally, if I had had a negative biopsy, I wouldn't have gone on a life-changing diet until I was 100% sure I needed to be on it. I would have went back on gluten and continued searching for an answer the moment the biopsy results came back negative. That's just me, of course.

I think one of the best things the celiac community can do is direct potential celiacs to doctors who have experience with the disease.


That would be your choice, but it would be a misguided one. There are no false positives on the blood tests. I've seen so much suffering in real life and on this board because people were told they didn't have celiac after a positive blood test and negative endoscopy. People lose years of their lives due to that type of thinking and they get more damage that is hard to reverse and is sometimes irreversible.

It's inhumane, cruel and a total disregard for the Hippocratic oath for a doctor to tell someone they don't need to go gluten free after a positive blood test regardless of what the biopsy says. Those endoscopies are fraught with problems from the fact that they only take 4 tiny samples of your 15-35 feet of intestines to the fact that so many doctors don't know how to read them.

It's bad enough to have doctors doing this to people but to have other celiacs doling out this advice is like a slap in the face. You are one of the few lucky ones who got positive on both tests and had a cut and dry diagnosis. MOST are NOT that lucky and go through utter hell trying to get better. Utter hell. Read other people's stories.

To say that people need to go to a doctor experienced with disease is blaming the victim. You may as well tell a rape victim she had no business being where she was when she was raped. If you don't know you have celiac you trust the doctors to figure out what is wrong with you. If you suspect celiac you generally are not the expert that you become after you get diagnosed or after you self diagnose.

Most people have limits on their insurance as to which doctors they can see. I only had one choice for GI office and there were two docs in the office both of whom talked me out of testing.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!


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