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Q & A with Dr. Vikki: Suspicious Family Medical History But No Clear Answers

Dr. Vikki Petersen, a Doctor of Chiropractic and Certified Clinical Nutritionist, is founder of the renowned HealthNOW Medical Center in Sunnyvale, California.

She is co-author of  “The Gluten Effect,” a bestselling book that has been celebrated by leading experts as an epic leap forward in gluten sensitivity diagnosis and treatment.

Dr. Vikki herself is acknowledged as a pioneer in the field of gluten sensitivity.  Featured in an exclusive interview on CNN Headline News, Dr Vikki is also endorsed by the National Foundation for Celiac Awareness and The Gluten Intolerance Group of North America for her contributions to gluten awareness in our country.

 

Hi,  Thank you for having “Ask Dr Vikki,” I hope you can help me.

I’m currently a medical detective for my family and myself.  Let me give you a little history.  I have many people in my family with issues (all on the same side of the family):  anemia, lupus, fibromyalgia, hypothyroidism, depression, rheumatoid arthritis, adhd, chronic constipation or diarrhea, liver disease, cancer, gassy/bloated, stunted growth (my son, 10 percentile).  Nobody has been diagnosed with celiac disease.  They’ve been just living with their symptoms and some getting worse.

So as you see, based on symptoms, it screams Celiac Disease in the family.  My blood work and my mothers blood work came back negative.  I believe it was an Anti-gliadin antibody (AGA) blood work.  I read this particular blood test can have low levels of accuracy.  I had an intestinal biopsy, this was negative.  My mom has a biopsy next week.  Now I’m leading up to the question.  My uncle who past away 5 years ago had rheumatoid arthritis and from what was described to me as dermatitis herpetiformis (watery blisters that burst and itched horribly). These were on his elbows, knees, and ankles.  Unfortunately, he got a staph infection due to these areas and died.  I believe I have DH on my elbows.

I recently read that with DH the gluten sensitivity manifests itself primarily on the skin with mild or no intestinal involvement.   I just ordered several tests from Enterolab.  I ordered the gluten sensitivity gene test for myself, milk protein stool test for my stunted 13 year old son (who is probably gluten sensitive as well), and a gluten sensitivity stool test for my 10 yr old son (very, foul smelling gas & constipated).  Both of my boys are ADHD.  And the final test is the anti tissue transglutaminase stool sample.  I don’t know who to use this one on.  One of my boys or myself?  I’m afraid if I use it on myself it will not be accurate because of the whole dermatitis herpetiformis on the skin thing.

Can all of this family history be gluten sensitivity and no CD?  Am I following the right protocol for now?  Do you have any other suggestions?

My mother has been sick for twenty years and every year has a new ailment.  The latest being lymphoma cancer in her neck.   She’s healing very, very, slowly.   I can’t remember a day in the past twenty years when my mom said ” I feel really good today.”  Very sad.  With my children,  I’m nothing but concerned for their health and well being.   I hate that they take meds for ADHD.   I hate that they look sickly.   I hate that my thirteen year old isn’t growing and maturing like his friends.   I hate that my uncle died when it could have been possibly prevented.   I need a definitive answer.   And unless I have an answer written on paper, my mother will not go gluten free and my husband will not let me change my boy’s diets.   Even for a few months to see what happens.  Very bull headed.

Please give me some guidance.   I would greatly appreciate it.  I live in York, Pennsylvania.  I feel the doctors in this area are not knowledgeable when it comes to gluten sensitivity and Celiac Disease.  Really, they’re in the stone ages!

Thank you so much,

Kelly

Hi Kelly,

That’s quite a family tree you have; it certainly sounds is if gluten could be playing a role, but testing and/or elimination will tell the tale at least for you and your children.

To answer some of your questions:

You’re correct that with DH intestinal involvement can be slim.  Why don’t you have your 13 year old use the tTG and dairy test and have your other son do the gluten sensitivity test as planned.  I think your best bet IS the gene test.  Genes don’t lie but a gut test for DH will often show negative.

Yes, your family could very well have all the diseases you mentioned with gluten sensitivity and not celiac disease.  That’s much of what we’re learning.  My personal blood-line family is also riddled with autoimmune diseases and I recently did a gene test on my mother to confirm if it was a celiac or GS tendency – we are all gluten sensitive – no celiac that I have found, despite a lot of ill health.

I feel for you with the issue of a stubborn husband.  Please let me know the results of the Enterolab panels.  If they’re negative then I would recommend the gene tests for the children too.  I think we must know one way or the other.

I hope this helps.

To your good health,
Dr Vikki Petersen
Founder of HealthNOW Medical Center
Co-author of “The Gluten Effect
Dr. Vikki’s blog
Dr. Vikki on Twitter
Register to become a member on the HealthNOW Community Forum

The following is an excellent video of Dr. Vikki sharing some research that continues to show that the intestinal biopsy is a poor indicator of celiac disease (unless there is already severe and extensive damage to the villi of the small intestine, which can take many years to occur):

Have a question that you would like to ask Dr. Vikki?  Email your question(s) to: askdrvikki@adventuresofaglutenfreemom.com

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Comments

  1. Leslie Payne says:

    Kelly,

    I really feel for you and know exactly what you are dealing with and facing. I have three boys, ages 8,7 and 4. My oldest has been below the 0% on the height and weight scale since he was 9 months old. They have all been sick since birth with diarrhea, vomiting, reflux, stomach aches, etc. I have been sick all my life with one autoimmune disorder after another. It also runs in my family. My maternal grandmother and paternal grandfather both died of colon cancer. Everything screamed Celiac, but all the tests came back negative. We found Enterolab and did the genetic tests. We have the celiac gene. It was such a relief to find an answer. My oldest also has Aspergers and Turrets. We control his hyperactivity and symptoms with diet. It is amazing what can be done through diet. I wish you luck in your journey, and i feel confident you can heal your children and get them off thier medications!

  2. KTag says:

    Kelly and others with these types of issues. Have you or your family ever been checked for Lyme Disease? If not, I STRONGLY urge you to get tested by a Lyme Literate medical professional.

    Lyme Disease is very sneaky and can mask itself to look like many other conditions. Most people who get it never get a bulls-eye rash or remember being bit by a tick. My first symptom was an early period that turned on an off like a water faucet. People who have it are often misdiagnosed with Fibromyalgia, Crohn's, Chronic Fatigue, Lupus, and other disorders. Children often are diagnosed with Autism or ADHD.

    For more information, go to http://www.lymedisease.org/lyme101/lyme_disease/l

    To find a Lyme Literate doctor in your area, visit http://www.chroniclymedisease.com/llmd-referrals

    My Lyme Story can be found here: http://tagudin.typepad.com/alter_everything/2011/

    Wishing you well with your health!

    Kathy

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