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My Health, My Choice

testing treatment diagnosis coping

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Posted 02 May 2013 - 03:21 PM

I am a nurse on disability. I have a long history of autoimmune problems and in the last week accidentally realized gluten is causing me problems. Of course I do not know whether it is celiac or gluten sensitivity, I only know that since I started avoiding gluten I am feeling better. I support strong positive relationships between patients and physicians. I strongly advocate patient education and encourage people to become active participants in their own health care.
That being said, all advances in science and medicine have come because someone looked at the status quo and wasn't satisfied. It is our right and responsibility to ask questions and when we are not satisfied with the answers to keep questioning until we find answers. This isn't only something we do for ourselves, but for those who come after us. We have the right to expect attention especially when the quality of our lives needs improvement. Pain and misery deserves the utmost attention. 
I’m reading other people's posts, people who are waiting for specialist appointments and eating gluten. They are miserable. Some are on a challenge but their labs are not reflecting expectations so they continue eating gluten. They are miserable. This is disturbing to me.
Let’s pretend for a minute that we are not dealing with gluten. What if someone bought hand cream and after using it their hands turned red and started peeling. This person goes to the doctor who takes one look and diagnoses Contact Dermatitis. The doctor tells them not to use the hand cream again. Why? When the body starts having reactions to a substance, continued exposure causes more, severe and possibly dangerous reactions. 
The person may now start having reactions to other products that contains lower amounts of the sensitizing agent to which they had not previously reacted. Sensitivities are not static. There can change, develop and worsen, which means if someone is prone to a sensitivity, one day there may not be a detectable problem and next day they have a reaction. After someone has become sensitized, it gets worse until that substance is removed.
I am not going to tell anyone how to manage their life or disease but I will share my plan on the issue whether it is gluten or any other health problem. I will explain my symptoms and history to the doctor, the circumstances of realizing the problem and the effects of my efforts at home. I favor blood tests, biopsies and skin sensitivity testing. However, if I’m asked to continue using something known to cause me health problems, I will consider the benefits. If I decide to return to eating gluten, I am not going to agree to continue past a return of symptoms proving the relationship of diet and those symptoms without the expectation of a clear benefit. I will also expect to be seen by the doctor making that request when my symptoms reoccur. I will not remain avoidably sick for long periods of time.
Chemotherapy is not withdrawn to verify a diagnosis. Insulin is not withdrawn to verify diabetes. If the person can manage their diabetes with other means (diet and exercise) there is not a question if they were misdiagnosed and they are not asked to prove their illness by returning to a previously dangerous lifestyle. Thyroid replacements are not withdrawn just to see what happens. These things are not done because it would put people at risk, it would cause harm. Advocating a course of treatment that causes harm and people at risk is not ethical.
The difference between those conditions and problems relating to gluten are what? The difference is the ability to see the problem in what is called an “objective” manner: in other words, visually, by lab tests, medical imaging studies, and so forth. What a person reports to the doctor is called “subjective” and in the eyes of many doctors, inferior evidence.  
I expect treatment as responsive to my needs in this situation as I would expect for any other. No person would invent symptoms causing such restrictions on their life as avoiding gluten without an actual problem. No person could detect the gluten hiding in foods or the environment allowing a report of a reaction without an actual problem. 
If I am asked to damage my body for the sake of a lab test, my response will be that such a requirement is inappropriate without a clear indication of benefit that outweighs the risk and damage caused. If I have to go farther, I will suggest reconsideration of the ethics involved. Damaging my body for the sole purpose of proving a point is unacceptable to me. 
If I have to say all that to a doctor, they may refuse to treat me. That is always their choice. We all have choices. I do know one thing. This practice will eventually change. History tells me this is true. Physicians bow to patient demands. This is fact but isn’t always a good thing. As patients, we got ourselves into trouble by demanding doctors offer treatment every time we dropped in with a mild virus. Since doctors knew we would go somewhere else if they didn’t comply, they handed out prescriptions for antibiotics until the antibiotics became ineffective. While it is a cautionary tale, this is still a good example of the power of the patient. When used wisely and properly, the power of patient expectations can and  eventually will change medical practice.
In a general practice, people with celiac or gluten problems are a large group and with specialists of gastroenterology, endocrinology and rheumatology the percentages are very large. There are always a few doctors who are willing to step out on limbs for the benefit of patients. After one of these doctors is found and the word spreads, social and financial pressures alone cause cascading changes throughout that community and beyond. 
If I need a cardiologist, I can expect to have the attention of my primary or emergency doctor who immediately finds a way for me to be seen by a specialist. Of course gluten is not as likely to cause death in the short term but I would argue that the relationship between high blood pressure and heart disease is as significant as the relationship of gluten and life altering complications of body systems including cancers of chronic inflammation.
So there isn’t a way to diagnose objectively and differentiate diagnosis? That only indicates an increased need to stay on top of current research and improve use of available measurements. Focusing on the development of tools to discriminate the differences of patient signs and symptoms could span the intervening gap and improve immediate care. 
Some conditions can only be diagnosed by subjective symptoms. When the choice is between listening to a patient or putting that person at risk, there is no ethical room for question. There is not an ethical reason to risk a person’s health,or damage well-being and quality of life if  another option exists. In the wide range of health issues related to gluten, is the quality of care improved by the certainty of knowing the origin enough reason to justify a prolonged illness to obtain a determination? If I am given a valid benefit..... wait, I’m sorry but someone has to chime in here because I sincerely can’t think of a valid benefit. As far as I am aware the treatment is the same, removal of the offending substance.
In medicine there is a saying: Treat the patient, not the machine. Machines can break and lack sensitivity, machines cannot see the big picture. My body can be more sensitive to insult than a machine can measure. Biopsies can become confused and misread, the results can be incorrectly filed or lost in the system of machines. I will be happy with the physician who understands the limitations and fallibility of the health care system, is sensitive to my needs, overall health, well-being and quality of life.  
I wouldn’t continue to use a hand cream causing me to walk around with reddened, peeling, cracked, oozing skin lesions while indefinitely waiting for a specialist appointment or positive lab results. I will decline to eat in a way that causes me to live with pain, diarrhea, constipation, sleeplessness, complications, damage of other body systems and in misery, simply to have medical records reflecting unnecessary determinations. I have nothing to prove to anyone.  
I choose this path for my health now and am unwilling to wait for the medical community in general. I choose to at least begin a trail for those who don’t feel they can speak up. I know others are joining in. This is who I have always been, I see no reason to start changing now. My choice may or may not be right for someone else but will always remain my choice to make.

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Posted 02 May 2013 - 04:12 PM

really enjoyed reading this  :)

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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 



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Posted 02 May 2013 - 04:22 PM

Thank you :)

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Deaminated Marcus

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Posted 02 May 2013 - 05:43 PM

In a Celiac book and online I've read about a test called Rectal Biopsy.

In 6 hours the test is done. No months of eating bread.

I asked a microbiologist at the hospital and he never heard of this test.


There's also tests for testing leaky gut but they're not available.


Keep us sick but not dead is the medical business model.

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Posted 02 May 2013 - 08:25 PM

Very well put!  I've been thinking about this quite a bit since I am currently eating gluten so I can have an accurate test done.  I'm only on day 5 (after only being gluten free for 12 days) and am ready to just do the test and hope it's accurate.  Sometimes I'm feeling ok but most of the time I just feel so yucky.

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Posted 02 May 2013 - 08:43 PM

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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!



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Posted 02 May 2013 - 09:39 PM

It's hard when you have to ask for exceptions to be okay with not having that full spectrum. I'm studying abroad this summer and had to ask for housing exceptions so that I can continue to stay healthy while I'm in Austria. This required me to have a full biopsy test for medical evidence. Luckily, I found out the documentation requirements while I was eating gluten again for my biopsy, which came back positive, thank god. But even if it had come back negative I would have gone off gluten forever. So for me, it was worth it. Yes, my grades took a major hit and I only vaguely remember three weeks of the past month, but there is nothing left to question, which feels so safe to me.


For those of us who aren't in control of our food (ie. students of all levels), those three extra weeks of hell are the only way to make sure that there never has to be any harm again. But oh how I wish we all had that level of choice. 

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IBS Diagnosis: 2010

Celiac blood results: 2/21/13 Positive

Biopsy: 4/19/13 - visually positive, 4/23/13 - positive



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Posted 03 May 2013 - 02:40 AM

Thank you for posting this. It is something I have been struggling wth lately. I've been gluten-free since February, and my body is starting to heal after 12+ years of daily headaches (that turned to daily migraines in Jamuary), chronic fatigue, and other symptoms. I'm pretty upset that my doctor didn't have me do the testing when I saw her 5 days after starting a gluten-free diet and reported its immediate effects. But now that I'm doing better, I really don't think I would survive any repeated exposure to gluten. When I had a flour communion wafer, I was deathly ill for 3 days. There's no way I could handle that for long enough to do the tests. I do think that people think I'm making it up some times, and I'd like to have a diagnosis to "prove" to them that I'm not, but it's just not worth it. So I'll never know.


Of course, if one of my kids started showing symptoms, I'd push for testing right away before removing gluten.

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-Gluten free (and migraine free!) since 2.28.2013
-"probable Celiac" May 2013, not willing to do testing
-I am a gluten free supertaster who can only handle small amounts of dairy, and I have serious aversions to meat and vegetables... yep, I live off of fruit, rice, corn, & potatoes :)



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Posted 03 May 2013 - 03:58 AM

Thanks for posting this.  I went gluten free before having blood tests and found there was no way to subject myself to a gluten challenge.  I had a positive response to the diet, a positive genetic test, and a pregnant looking belly.  My MD looked at all these things and told me that I had celiac disease and should never eat gluten again. 


Do no harm.  I remember spending a week super-fatigued after drinking "glucola".  The pregnancy I was in also began some complications after that.  After that experience I forced myself to only do what seemed safe to me.  I decided that I would never have my blood sugar tested that way again.  I would also run any desired test through my own brain first and decide if it is worth any risk that it causes.


You put all of this so well.  It sounds like my friend Lisa M who is also a nurse.  We are responsible for our own health.  Beware.  Don't let anyone be little or disrespect  you  in order to do a foolish test.

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Posted 03 May 2013 - 04:36 AM

Great post OP. 

I also have read about the mucosal challenge where a gluten suppository is used either rectally or orally. The tissue is then biopsied a few hours later to look for the antibodies. This test means that suspected celiacs do not have to poison themselves for weeks or months for a chance to be diagnosed. I first read about this years ago and have to wonder why it is not being used widely yet.  But then I look at the aisles of OTC drugs to control celiac related symptoms along with all the script meds......

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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)

celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom

Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)



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Posted 03 May 2013 - 08:32 AM

Emi, I can see you were offered a clear benefit and even though the time was lengthy, was not indefinite. I would never diminish your ability to make the choice that is right for you.

After reading other replies , I believe I would go through testing, even  lengthy testing, if it would help diagnose my child or family member. I would be able to see a clear benefit in that situation. 

I therefore stand corrected, there are situations where testing is beneficial.

I want  everyone  to understand, supporting each individual's choice is as important as supporting our own decision. So often we give ourselves over to the demands of those who don't know us, our lives, dreams and needs. We do what we are told is best without knowing why. 

 Everyone has permission  to make their own choice. I didn't give it to you. It was yours all along. Don't let anyone take that permission away. I will always support whatever choice one person makes to suit their own life.

When we go to a doctor or have a procedure we are asked to sign a permission form. No one emphasizes the importance of that form and if asked, it is explained in negative terms such as "we can't treat you unless you sign the form". Permission forms are actually the signposts of patient power. Treatment and procedures require adequate explanation before these forms should be presented. We should always, stop a minute and think if we have been given understandable reasons of benefit. 

Our power of choice should be shared for good reasons with those who are willing to treat us with the respect we deserve.

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