I thought I would share the results from Luke’s recent gluten sensitivity and gene panel test that I ordered through Enterolab. I realize there is some debate on the validity of these tests since Dr. Fine’s research hasn’t undergone the peer review process. Either which way, I think it is a useful tool that can help people gain valuable insight about their health.
I had the gi-normous honor of speaking with one of my heroes on the phone last night, Dr. Ron Hoggan, Ed.D., co-author of Dangerous Grains,* and Editor of the Journal of Gluten Sensitivity. I asked Ron his opinion on the following Enterolab results for Luke, and while he confirmed that Dr. Fine’s work has not undergone the rigors of the peer review process; he did point out Dr. Michael N. Marsh’s scientific research on the rectal challenge for determining gluten sensitivity (which I had read about in Dangerous Grains, but have never been told about by my physicians).
For more scientific articles on the rectal challenge for determining gluten sensitivity:
Observations of the Time-Course of the Inflammatory Response of Rectal Mucosa to Gliadin Challenge in Gluten-Sensitive Subjects A. Ensari, A. Ager, M. N. Marsh, S. Morgan and K. Moriarty
Studies of Intestinal Lymphoid Tissue. XII. Epithelial Lymphocyte and Mucosal Responses to Rectal Gluten Challenge in Celiac Sprue. Loft DE, Marsh MN, Sandle GI, Crowe PT, Garner V, Gordon D, Baker R. PMID: 2721877
In case you are unfamiliar, Dr. Michael N. Marsh is the world renowned celiac researcher behind Marsh Classification. For an easy-to-read and understand article about the Marsh Classification, please read Making Sense of Marsh by Sonia S. Kupfer, M.D., of The University of Chicago Celiac Disease Center. See the Journal of Clinical Pathology for more scientific articles.
The following are Luke’s test results from Enterolab, I will highlight key points in red:
Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 37 Units (Normal Range is less than 10 Units)
Fecal Anti-tissue Transglutaminase IgA 8 Units (Normal Range is less than 10 Units)
Quantitative Microscopic Fecal Fat Score Less than 300 Units (Normal Range is less than 300 Units)
Fecal Anti-casein (cow’s milk) IgA 12 Units (Normal Range is less than 10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0602
HLA-DQB1 Molecular analysis, Allele 2 0602
Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6)
Interpretation of Fecal Anti-gliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.
Interpretation of Fecal Anti-tissue Transglutaminase IgA: The level of intestinal IgA antibodies to the human enzyme tissue transglutaminase was below the upper limit of normal, and hence, there is no evidence of a gluten-induced autoimmune reaction.
Interpretation of Quantitative Microscopic Fecal Fat Score: Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.
Interpretation of Fecal Anti-casein (cow’s milk) IgA: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.
Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.
Stool Analysis performed by: Frederick Ogunji, Ph.D., EnteroLab
Molecular Gene Analysis performed by: American Red Cross
Interpretation of all results by: Kenneth D. Fine, M.D., EnteroLab
Interesting! While Luke does not carry one of the known genes for celiac disease, he does have a double copy of the genes for gluten sensitivity.
I was a bit perplexed by the positive Fecal Anti-gliadin IgA, seeing that we are a gluten-free family. Dr. Hoggan indicated that Luke may be part of the population of gluten sensitive people who react to oats, even gluten-free oats. So, out go the oats!
I also asked Dr. Hoggan what it means exactly for Luke that he has non-celiac gluten sensitivity. Is it to be taken as seriously as celiac disease (YES!)? If so, how do I get his school to take his dietary restrictions as seriously as Sam’s celiac disease (for which I was able to get a written note from his doctor)?
Ron sent me the following PubMed abstract and told me to print it out and take it to Luke’s pediatrician, who should have no problem writing a letter for Luke’s school, based on his positive test for gluten sensitivity and the serious information in the following article:
Before I go on, I must take a second and gush over Dr. Ron Hoggan. Not only is he a dedicated advocate, educator and researcher in the field of gluten sensitivity; he is one of the KINDEST human beings I have ever “met.” He has a great laugh and I even found myself “speaking Canadian” after getting off the phone with him (I have a good Minnesotan accent too). ;-) To take time out of his busy schedule to talk to little ole me, couldn’t say more about that man’s character. I just love him and I almost told him so (apparently, I am not the only one who feels this way either, Ms. Shirley from GFE has actually told Ron she loved him after her similar experience with him, LOL!).
This is a personal blog, not a medical journal, so gushing is allowed from time to time!
Luke is also mildly reactive to casein, a protein found in dairy (Luke has tested negative for a dairy allergy in the past via the skin prick test and RAST test), but I have recently learned there are pitfalls with those tests as well, and they only measure IgE responses to foods, not IgA and IgG.
Since taking Luke off of dairy completely a couple of months ago, his eczema is almost non-existent!
Want to know what Ron told me that almost knocked me off my chair? Casein can cause enteropathy (villous atrophy)! I am sure there are many people that already know that, but I sure didn’t!
Check out this article by John Libonati on Gluten Free Works: Bovine Beta Casein Enteropathy Causes Villous Atrophy and Anemia.
More fascinating reads:
Is Celiac Disease (Gluten Sensitivity) a Pre-Malignant Disorder? by Dr. Michael N. Marsh
Dr. Ron Hoggan, Ed.D., has a new book out, written with Scott Adams, Founder of Celiac.com, called Cereal Killers: Celiac Disease and Gluten-Free A to Z. I received my copy of Cereal Killers in the mail the other day, and while I have only read a few pages thus far (getting ready to go on vacation tomorrow), I will say this: order a copy!
Shirley over at GFE has a comprehensive list of Dr. Hoggan’s educational publications on gluten sensitivity. I highly encourage you to check it out.
Did you find any information in this post that was “news to you,” like I did? I would love to read your thoughts!
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