Gluten Intolerance – Increasing Awareness (even of your Dr)!

on May16
by Dr. Vikki Petersen | Print the article |

Since I wrote the book “The Gluten Effect” with my husband, my life has revolved around assisting those who are suffering from gluten intolerance, both knowingly and unknowingly.

Those Diagnosed & Undiagnosed – Both Need Help

I mention both those who are diagnosed as well as those who aren’t because:

1. Too often, even those who have received a diagnosis and are avoiding gluten continue to struggle with poor health. For them we focus on treatment of the secondary effects of gluten.

Why? Because complete normalization of gut lesions is very rare in adult patients with Celiac Disease – only 8% completely heal. [Reference cited at the end of this post.]

We have found that to restore the gut to a healthy, “non-leaky” state requires evaluation for the presence of:

•  inhospitable organisms

• imbalanced probiotics (the good guys of the gut)

• other cross-reactive foods that mimic gluten without being gluten

• nutritional deficiencies

• hormonal imbalance, and more.

2. Of course with only 5% of our celiacs ever receiving a diagnosis and, at best, 1 or 2% of those suffering from gluten sensitivity ever getting diagnosed, we obviously have a lot of work to do.

Due to the fact that the majority of my time is spent in this area, I forget sometimes how current our knowledge base is here at the clinic. I find myself being surprised when I discover what other clinicians are saying to their patients.

An Elderly Woman Misdiagnosed

Let me give you an example:

I lecture frequently at local Silicon Valley corporations. I am also a guest lecturer for several local Whole Foods. Two evenings ago at the end of a lecture about gluten intolerance, an elderly woman came up to me with lab results in hand. She was very sweet but didn’t look at all well.

I cannot diagnose someone without a prior examination and I was just about to tell her that when she began to speak. She had pictures of her colon as well as the doctor’s evaluation of the test that was performed to view her intestines. It said she had complete villous atrophy (the hallmark of celiac disease) and the pictures made that diagnosis very clear.

I asked her what her doctor told her to do. She said that he diagnosed her with irritable bowel syndrome. This too was written on the report. Trying to be diplomatic I asked if there was any mention of celiac disease. She looked at me sadly and said that she had asked about it specifically since it ran in her family but the doctor said that she was fine to eat gluten – and she was.

Wow! It is difficult to fathom what the gastroenterologist was thinking when he wrote that report. I’m the first to give intestinal biopsies a hard time due to their insensitivity, but with complete villous atrophy (severe intestinal destruction) clearly evident, not to mention a strong family, one has to wonder.

While the patient only showed me the endoscopy report, I am curious to know if any celiac blood tests were performed.

Did they consider she was perhaps too elderly to change her diet? My own mother didn’t go gluten-free until she was in her 70s and she is now 88. She states that her 70s and 80s have been the healthiest decades of her life!

Such misdiagnoses occur quite commonly in our country, much to my dismay.

And that’s focusing on celiac disease. What about gluten sensitivity; a condition that most clinicians don’t even know exists? How often do you suppose that is misdiagnosed?

What are Some Common Misconceptions?

1. If a person doesn’t have celiac disease then they don’t need to remove gluten from their diet

2. The gold standard test for celiac disease diagnosis is an intestinal biopsy. If that is negative, there is no need for a gluten-free diet, regardless of blood testing or symptoms.

3. If their lab tests are negative (for either celiac or gluten sensitivity) then they are fine to continue eating gluten.

4. If a person has no digestive complaints and/or is not underweight, there is no reason to test them for gluten intolerance.

What is the Truth

1. If a person doesn’t have celiac disease, that doesn’t mean that they are not gluten sensitive. Gluten sensitivity affects a minimum of 10 times the number of people who have celiac disease. A conservative estimate puts that at 20 million Americans suffering with gluten sensitivity.

Considering it is known to decrease life expectancy, it is vital that we not miss the diagnosis of either of these debilitating conditions.

2. An intestinal biopsy is not a sensitive test. It requires marked damage of the small intestine before it shows positive. Dr Fasano, one of the leaders in celiac research, has stated quite recently that he too no longer considers it the gold standard; not even close. (That’s the two of us pictured at a conference.)

3. Even with the recent improvement of lab tests, we still suffer from a lack of sensitivity. The newest tests are a leap forward, but what really is the gold standard?

Many of us feel that it is embarking on a 30 day gluten-free diet. One must be 100% gluten-free for this to work – no cheating.

When done correctly, this free home test, can very clearly tell you what your body thinks about gluten.

4. All too often, doctors are locked into the notion that an individual with celiac disease will present with severe digestive problems. While that certainly can be the case, more often the individual has mild or absent digestive problems but instead complains of skin problems, fatigue, depression, migraines or joint pain, to name but a few.

It is truly maddening to hear that a doctor refused to test a patient solely because they did not have digestive problems or they were overweight – another misconception.

While we obviously have a lot more work to do, on the up side, it is wonderful to see that the leading researchers in the field now concur that gluten sensitivity is a very real condition that must be better understood. And to that end many are devoting time and money towards its research.

It is gratifying to see this as we have been witnessing the effects of gluten intolerance (both celiac disease and gluten sensitivity) in our practice for over 15 years.

This is hopefully the beginning of widespread knowledge and awareness on the topic and that is exciting. In the meantime we still have a grass roots movement to keep going, so please continue to educate your friends and family.

Help to Increase Doctor Awareness

What can you do to increase the awareness of your doctor?  There is now an amazing tool courtesy of the National Foundation for Celiac Awareness (NFCA). The NFCA has been tireless in their pursuit of increasing the rate of diagnosis of celiac disease. They are committed to the same increased awareness that we are. Their President, Alice Bast, herself a celiac, is an amazing leader in this community and I am proud to have her as a friend.

In a stroke of brilliance, Alice and her team recently created a tool for doctors that is easy, free, and will increase their awareness of gluten intolerance dramatically.

Per the NFCA:“Physician awareness in the U.S. has frequently been identified as a critically important yet unmet need – until now.”

The program is called: Primary Care CME: Defining, Diagnosing and Managing Celiac Disease. [CME stands for continuing medical education - doctors are required to attend continuing education seminars on an annual basis]

“This program delivers the education primary care providers, a community on the frontline of diagnosis, critically need. It is also a resource for patients. Tell your doctor. He or she can get more information about this free program here: www.CeliacCMECentral.com. Per the NFCA: “Physician awareness in the U.S. has frequently been identified as a critically important yet unmet need – until now.”

I hope you find this helpful. Please send me any questions you may have in the areas of gluten intolerance or clinical nutrition. As a destination clinic we see patients from across the country as well as internationally. We are truly here to help you, your family and friends.

To your good health,

Dr Vikki Petersen, DC, CCN

Founder of HealthNOW Medical Center

Co-author of “The Gluten Effect”

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”.  She has been featured in national magazines, international medical journals and is a frequent headlined speaker.

Reference:

Alimentary Pharmacology & Therapeutics. 2009 Jun 15;29(12):1299-308. Epub 2009 Mar 3.

 

 


The Author

10 Comments, Comment or Ping

  1. Elizabeth

    1

    If you can please help me, I would be so grateful. My daughters are 2 and 5. My youngest has severe food intolerances that would cause rash, congestion, diarhea and seems like trouble getting to sleep. Her trigger foods are casein, soy, and gluten. However, sadly, her symptoms are diminishing. I know from researching this whole mess that symptoms may diminish, but you don’t outgrow food intolerances. I say sadly because my husband thinks I’m a hypochondriac. I believe I have celiac disease and hope to be able to be tested soon. Both of my girls tested negative for celiac disease. The youngest daughters genetic test revealed the HLA DQ 2.5, but the oldest’s genetic test got mixed up in the lab. She has to be retested. My oldest daughters antibody levels were very very low. Including her IgG levels. I had hoped the IgG level would have been high. My proof. But they were practically non existent. Youngest daughter’s levels were low but she had been under the age of two when tested so I’m not too suprised. Anyway, my oldest daughter’s height and weight were in the 50 – 75 percentiles while she was under the age of one and dropped down to the 10 – 20 percentiles after one. Doc didn’t seemed to alarmed since she didn’t fall below 10 percent. I was concerned. After learning about celiac I asked for her to be tested for it but it was negative. I asked for a referal to a GI who tested her but it too was negative. I went on “the voice in my head” that said to take gluten out anyway. Her ribs stopped showing, her stomachaches disappeared, she acted better in preschool, and her crazy wild fits stopped being thrown. My problem is that my husband doesn’t believe me. He thinks it’s something besides gluten. He feeds them wheat all the time. I have given up the fight temporarily, since a gluten free lunch will be crossed out by a glutenized dinner, but it makes me sick to feed them wheat. I hope that if I get a positive celiac panel I will have something on my side to argue with. I don’t want them to grow up like I did. While I didn’t suffer terribly from this I was always tired, had an autoimmune disease called uveitis and almost lost my sight when I was 9, joint pain, mouth ulcers, growing pains, low bone density…etc. If you know of any other test I can have run on these girls besides IgG please tell me so I can do it. I don’t have much extra money right now to go chasing down a doctor. They are on medicaid and the oldest’s ribs are showing again despite eating normal amounts of food….if you can call wheat a food. Thank you so much.
    Elizabeth

    16 May
  2. Elizabeth

    2

    I’m sorry, I meant if you know of any other tests besides IgG or IgA I could run on them. I thought about the stool test but I don’t have $200 right now and even if I did he would argue that mainstream medicine doesn’t agree with the stool test anyway. Is there more than one IgG? Is there an IgG-EMA, or IgG-tTG? I think they ran the IgG-AGA on the girls. I may sound crazy, but I feel kind of desperate right now since they are still so young and catching gluten intolerance now would prevent so many problems down the road. I happened to remove gluten from my diet for a month or so and I have never felt that good in my life that I remember. I was always mildly fatigued. Even eating right, exercising, and getting 8 hours at night I would still have a mild fatigue. I started eating it again just for them. If it wasn’t for them I would have laughed at anyone who told me to start eating it again to get tested.

    16 May
  3. 3

    Hello Elizabeth,
    Cyrex Laboratories has a new blood test for both gluten sensitivity and celiac disease that is more comprehensive than we have ever had. Our lab tests have always been riddled with false negatives but these tests are looking for more of the problematic pieces of the gluten protein. Without getting too complicated, there are estimated to be 60 problematic portions of the gluten protein. Up until last January we were only testing for one of them. This new test looks at 10. Not quite the full 60 but 10 times better than before.

    It does seem likely that your daughters are affected so my recommendation would be to get them that test – it’s the Array 3 test. You can google them: http://www.CyrexLabs.com.

    Good luck! Let me know how it all goes.

    Best,
    Dr Vikki

    16 May
  4. Casque Monster PRO Haute

    4

    Hey! I just would like to provide a huge thumbs up for this wonderful info you’ve here on this article. I’ll be coming back to your sites for even more soon.

    16 May
  5. Jody

    6

    Hi Dr. Petersen, When I saw the title of this article I had to laugh. I was at an appointment with my primary care doctor last week and mentioned that an allergy doctor had told me that I had gluten sensitivity, and possibly celiac disease. He seemed confused and asked ME “what can’t you eat on a gluten free diet?” It’s so nice to know that there are doctors like you out there that “get it” and know what steps to take to heal your patients. I only wish I didn’t live across the country from your clinic. I’d be there tomorrow! —Jody

    16 May
  6. 7

    My goodness Jody, that doctor certainly was out of touch! When you said you lived across the country I was more expecting you to say you lived in some underdeveloped country – that would better explain the doctor’s ignorance.

    Just so you know, our Destination Clinic sees patients from across the country and internationally. You only need to come out for a few days and then we can treat long distance after that. I don’t want you to keep suffering needlessly and not receiving the assistance you need. We are in a fun part of the country and the weather is always lovely!

    Let me know. We are here to help!

    To your good health,
    Dr Vikki Petersen

    16 May
  7. Ann Rice

    9

    Doc,

    I would appreciate your input with respect to getting my elderly Aunt’s doctor/guardian/Alzheimers nurse team to thoroughly screen her for gluten sensitivity. She became a ward of the local county while I was away on military duty three years ago.
    The diagnosis is Frontal lobe dementia -possibly Pick’s disease.

    I was diagnosed 2years ago with Celiac through a positive anti-tTg IgA serum (neg on endomysial). .. 6weeks after a shingles outbreak, and 6months after my mothers death of heart failure.
    It took me months to clear my brain, and now that I have realized my mother probly had celiac (20 years of fibromitosis).

    Now that I have cleared my head, I know my Aunt’s dementia is linked to Gluten. She eats everything in front of her, but has Osteoporosis at 68yrs old. And now bites or chews almost anything in front of her.

    Maybe on aside, you can address the lack of being able to get gluten free meals in assisted living facilities!!! How many alzheimer’s patients do you think are food intolerance?

    16 May
  8. 10

    Hi there, just became aware of your blog through Google,
    and found that it’s truly informative. I am gonna watch out for brussels.
    I’ll be grateful if you continue this in future. Many people will be benefited from your
    writing. Cheers!

    16 May
  • Gluten: Myths and Truths | Suzanne Cormier, PhD - Jun 1st
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