Do You Search On-line for Health Information?
We live in the information age. The internet provides us with data on almost every possible 
subject at the click of a mouse or the tap of a finger. Have you researched your health on the internet? If so, you are part of a fast growing segment of the population who is doing just that. Whether you wanted more information on gluten intolerance or something else, more and more individuals are discovering valuable information on the internet.
Has Your Doctor Asked You Not To?
Have you ever had a doctor get mad at you when you shared with him or her something you learned on-line? Very often I hear from my patients that other doctors whom they’ve seen have asked them to discontinue searching on-line for information regarding their health. Some have been so aggressive, according to patients, that they have said they will refuse to treat the patient if they continue their own research.
A very close friend’s young adult son recently diagnosed his own tumor after researching on-line. When he went to his doctor with the diagnosis (that later turned out to be accurate), his doctor dismissed it as unlikely!
As a clinician myself, I can partially understand why some doctors might be frustrated with their patients’ desire to diagnose themselves, especially if it results in a different self-diagnosis each week or escalating anxiety about conditions unlikely to occur. But for myself and my team, we believe that knowledge is power and that the person who owns the body understands it best. We are therefore very respectful of each patient’s opinions.
Self Diagnosing Gluten Intolerance is Very Common
When it comes to gluten intolerance, self-diagnosis is becoming more common. In fact, when it comes to the limited understanding of most doctors as regards the subject, I would out-right encourage people to diagnose themselves. I have some suggestions on how best to accomplish that, so read on.
But when you think of weighing no diagnosis to a self-diagnosis, can you really compare which is better when it comes to a condition that is known to create early death and initiate hundreds of diseases and symptoms? There is certainly no danger to going gluten-free, but there is a large danger associated with continuing to eat it when one is intolerant.
Granted it would be ideal to run a comprehensive blood test that distinguished between celiac disease and gluten sensitivity and accurately, sensitively diagnosed each. Does such a test exist? Not exactly. Our best test at the moment, in my opinion, is a Cyrex lab blood test that evaluates several markers for both diseases and likely produces far less false negatives than a single tTG or AGA test (common tests for celiac and gluten sensitivity).
But perhaps the most sensitive test is the one you can do at home and it’s free – a 30 day gluten elimination diet. Feeling better after removing gluten is a valid test.
Most Suffer Undiagnosed
Obviously if the perfect test existed we would be much better at diagnosing celiac disease than our current ‘success rate’ (sarcasm intended!) of 3 to 5%. When it comes to gluten sensitivity we likely diagnose a paltry 1% only.
Are we missing something? We are certainly missing the critical diagnosis of millions of Americans suffering from one of these two diseases. We are missing a broad scale awareness campaign that alerts the millions suffering that they are at risk. We are also missing a drug treatment – the option of choice in our US healthcare system, although I am personally not a big fan as all drugs come with side effects.
Will You Join Me in a Grassroots Movement?
I propose that we take this mission on ourselves. The truth of the matter is that without pharmaceutical involvement in the way of an expensive medication, mainstream medicine is not going lead the charge. We need to you – you and I.
Grassroots movements can be very powerful. We already have the food industry behind us. Goodness knows they are happily manufacturing more and more gluten-free foods with each passing year. The pharmaceutical companies may not be making any money on gluten intolerance, but food manufacturers definitely are. I think they would be more than delighted to add millions of correctly diagnosed celiac and gluten sensitive patients to their customer base.
Let Me Hear Your Ideas…
So how should we do this? I want to hear from you. This is not something I can do alone. I write blogs such as this, lecture and make videos often. But without your support I cannot create the level of awareness that all those undiagnosed gluten intolerant people need.
Please let me know your thoughts. I am ready to launch this campaign in earnest, but I need your help.
I look forward to hearing from you!
Remember we are here to help those who need it. Our purpose is to get to the underlying root cause of why your body is not functioning the way you desire it to. If you’d like to receive a free health analysis, just give us a call at 408-733-0400.
To your good health,
Dr Vikki Petersen, DC, CCN
Founder of HealthNOW Medical Center
Co-author of “The Gluten Effect”
Author of the eBook: “Gluten Intolerance – What you don’t know may be killing you!”
Permission is granted to re-post this article in its entirety with credit to Dr Vikki Petersen & HealthNOW Medical Center and a clickable link back to this page. Dr Vikki Petersen, DC, CCN is founder of HealthNOW Medical Center and the author of “The Gluten Effect” and eBook: “Gluten Intolerance – What you don’t know may be killing you”. She has been featured in national magazines, international medical journals and is a frequent headlined speaker.
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7 Comments, Comment or Ping
Cindi Picou
Dr Peterson, thank you for writing and blogging about health issues. I have had asthma since childhood; Hashimoto’s Thyroiditis since early adulthood, along with excema episodes. When I first began to learn about gluten intolerance, I didn’t think it pertained to me, but I decided to “go off” gluten for a short period. After only 2 weeks, I had severe diarrhea after only eating 1 cookie. That was my “aha” moment. If I hadn’t taken myself off of gluten, I would still be wondering why everything I ate made me sick, and having horrible asthma symptoms, brain fog, clumsiness, increasing dosage of thyroid medicine. If I had not thought to do this myself (self-diagnosis) I would still be suffering. No doctor was interested in connecting the dots of my various symptoms and getting the picture of celiac disease.
I have learned so much from you and a couple of others on the internet about signs of developing celiac; I can see so many things that should have clued me in – had we known about this 30-40 years ago!
Thanks again!!
Dr Vikki Petersen
I understand Cindi, it is frustrating that you have to be your own doctor these days, especially when it comes to gluten intolerance.
Please spread the word and let me know if I can assist you in any way. Our destination clinic treats patients from across the country and internationally. Let me know if you’d like a free health analysis – we’re here to help!
Call 408-733-0400.
All the best,
Dr Vikki
Mike
Another self-diagnoser here. It bothered me for almost 20 years why I was always tired, anxious, couldn’t concentrate, had difficulty remembering things, and didn’t sleep well at night (even after being diagnosed with sleep apnea and using a CPAP every night). Antidepressants helped with the anxiety for six months or so at a time; with CPAP use I felt better for somewhat less than a year before sleep quality returned to its previous level.
On a hunch, I bought a glucose meter and tested my blood sugar. Discovering that it would regularly go above 200 after meals (the current threshold for diabetes), I went on a low-carb diet, one which incidentally eliminated all grains, not to mention added sugars. Within three days I felt the difference: increased alertness, more restful sleep, less anxiety, more energy. These benefits waned only when I cheated on the diet.
After several months of meal tracking and experimentation, the pattern finally emerged that gluten-containing foods were the problem, not (as initially suspected) blood-sugar surges. (Though blood sugar usually rose sharply as well after ingesting wheat products.)
To date, the benefits of going gluten-free have included: reduced allergies; lowered CPAP pressure; better concentration & memory; increased energy (I’ve had enough energy to have kept with 2-4 visits per week to the local YMCA for 3 months now); reduced anxiety (no more meds!; waking up refreshed & alert in the mornings; and almost 30 pounds of weight lost.
Living gluten-free has relieved so many problems that I will never go back to eating the way I used to.
rachel hadfield
Until I stumbled upon your website a little over two years ago, I thought I was slowly going crazy, with symptoms including migraines, dizziness, a fuzzy head, anxiety, depression and hormonal problems. Having been gluten (and dairy) free since then my health has improved greatly. However, my doctor hardly listens at all when I make any comment about gluten intolerance and will not take me seriously on the subject since my blood test and biopsy both came back negative.
I’ve also found that many friends and acquaintances have a similar reaction when I start to talk about the advantages of cutting out gluten; I’m seen as quirky or eccentric at best and slightly mad at worst. There is such a wisespread belief held in the Western world that wheat (and dairy) products are nutritious and essential for a healthy body, that anyone saying the opposite will have difficulty convincing people, as I’m sure you and many readers are well aware.
It also doesn’t help that many gluten-free products found in health food stores and supermarkets are so expensive. It’s hard to persuade people to try even a 30-day trial without gluten when they see the difference in price.
I think the idea of a grassroots movement is comendable, and would have my full support. I’m a bit short on ideas, although I would suggest the promotion of gluten-free recipes/food fairs to show people that it’s easier than they’d thought to go gluten-free, you can still enjoy your food and that it doesn’t have to cost a fortune either – you just need a little bit of creativity and thought.
Amy Martinez
Hi Dr. Vikki: I found your site and that of Dr. Peter Osborne a few months ago due to my now 18I month old sons a few months ago. Through my research I diagnosed my sons endocrine isues were due to gluten sensitivity. I eliminated gluten from his diet back in May. In July his new blood tests showed that all was normal. Ihad a feeling that my daughters had gluten issues too so I had all of us genetically tested and all five of us have the gluten sensitivvity genes. My husband is the most resistant. I have been allowing fries but am rethinking this now after reading another of your blog entries. Any way this whole issue that started with my son has led me to start online clSses with the Institute of Integrative Nutrition to become a Health Coach. I plan to focus on the area of gluten sensitivity to help families in the greater Cleveland, Ohio area. Thank you so much for your work and helping us to begin to diagnose ourselve and family members since traditional doctors are so outside the loop.
Monika
I diagnosed myself recently too. My sister started telling me she thinks we may have a gluten issue because of our on going skin problems. She got my gears turning, so I decided to try going gluten free to see what would happen. My awful, itchy rashes disappeared and would only come back if I had gluten. I’m a grad student, so thorough research isn’t new to me. I kept searching and reading and figured out that I have dermatitis herpetiformis/skin version of Celiac. I made sure to look up other skin diagnoses as to not jump to conclusions, but DH describes me 100%.
My skin problems were always passed up by doctors as eczema or atopic dermatitis, but freaking out crying from insanely itchy, painful, rashes always seemed like something more to me. I suppose at this point I could go try to get an official test, but I kind of don’t see the point. Go to a doctor who doesn’t believe me, to demand a test they may not have or want to give me, or potentially get a false negative as blood tests aren’t great at detecting DH… and even if I wanted to do this, I’d have to eat gluten again so it would be detectable which would trigger my horrible skin reactions which I just can’t justify. The idea of eating gluten terrifies me because it hurts so badly if I do. I haven’t even been tempted to ‘cheat’ at all because I’m so happy to have normal skin for the first time in my life.
I don’t really see the point of an official diagnosis. I’ve figured out what was hurting my body and removed it. I’m eating clean foods – fruits, veggies, protein and baking my own breads and snacks. I mostly avoid processed foods and carefully read labels if I do get something. Going gluten free has honestly changed my life. My skin doesn’t hurt at all, I’m eating well, and I feel amazing.
Thanks for your posts
Dr Vikki Petersen
Well done on diagnosing yourself Monika, and I’m so happy for you that you don’t need to suffer any longer! It is unfortunate, but true, that dermatologists frequently miss diagnosing DH. One thing you can do, that might help some family members, is to do a genetic test. It will show the celiac gene, likely, and for this test you don’t need to eat that evil gluten! EnteroLab has an online test that’s pretty reasonable and, while not necessary for you, it might help with the family tree. Too often celiac is present in families and because the symptoms express themselves in so many different ways, it’s missed.
Just a thought!
If you need any assistance, please let me know.
Best,
Dr Vikki
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