What is Gluten Sensitivity?
This site is about the big picture of gluten sensitivity (GS) or gluten syndrome.
Gluten sensitivity is a broader term than “celiac disease” and encompasses a whole set of medical conditions in which gluten has an adverse effect. It includes celiac disease and the non-celiac population who are being affected by gluten in different ways. There is more to gluten toxicity than the classical definition of celiac disease. The classical signs of celiac disease were: diarrhea, abdominal bloating, excessive gas, malodorous stools that float, weight loss, paleness, lethargy, irritability, malabsorption syndrome. Today, the accepted definition of celiac disease has been expanding to include other symptoms, but for the purposes of my blog, I prefer to use the term “gluten sensitivity” unless I am speaking of celiac disease specifically.
My dedication to discussing this issue as a whole, stems from my observation of patients, my own life’s experience and abundant research in the literature to support it. Looking at the whole picture of GS dramatically changes how we view others and ourselves in the mix of this gluten toxicity crisis.
People tend to view celiac disease as a rare and isolated occurrence within their family, but celiac disease is only one subset of gluten sensitivity diseases and is the most commonly identified one. Families cook for themselves and gluten free for the celiac as if they have no connection to the diagnosed family member. I have seen the desperation of newly diagnosed celiacs and the isolation they feel. Well, I have news. They should not be isolated, because the ones doing the isolating possibly are gluten sensitive too, but in unexpected ways and without the classic symptoms of celiac disease. Celiac disease does not come out of nowhere and does not exist alone in the family tree.
In addition, the newly diagnosed is usually sent out with no help or guidance on how to implement the gluten free diet. My goal is to lift the level of awareness to see the big picture of gluten sensitivity and at the same time bring resources and practical hints to help people implement a healthy gluten free lifestyle.
In a research paper published in GUT, (2007;56:889-890; doi:10.1136/gut.2006.118265) researchers asked the question, ” Is gluten (gliadin/glutenin) safe for non celiac individuals?” Their conclusion in simple terms is that the toxic peptides (proteins) in gluten grains causes the same response in both non-celiac and celiac individuals. We all have an innate immunity to gluten. It is how the individual ADAPTS to the presence of gluten that determines whether or not he or she will have celiac disease or gluten sensitivity. In my mind, this explains why celiac disease often presents itself after a stressful event, such as the birth of a baby or even after an intestinal virus or flu, when stress adaptation is compromised. So, I am opening my arms to everyone who will think in a new and more universal way about the issue of gluten and the effects of these “toxic peptides” on our health and especially the health of our children.
What is Gluten?
Gluten (gliadin) is the protein (peptide) part of wheat, rye, spelt, barley and oats (BROWS) and the products derived from them: barley malt, chapatti, couscous, durum or einkorn or emmer (wheat), farina, farro or dinkel (spelt), fu, graham flour, hydrolyzed wheat protein, kamut, Matzo meal, modified wheat starch, seitan, semolina, triticale, vital gluten, wheat germ, wheat bran.
Oats are technically gluten free, but there is such a high level of comingling of oats with prohibited grains during production that they are included in the list. Also, it may be that some people can safely eat oat gluten and others cannot, so eliminate oats to be on the safe side. Some people don’t do well on millet ( I am one of them) or quinoa, either and so I advise adding these grains much later, if at all.
Symptoms of GS
The symptoms and effects of GS are expansive and illusive and too long to list here. As I have said, it goes way beyond the definition of classical celiac disease and I will attempt to paint a picture of this behemoth, that primal unconquerable monster of the land.
It is a stealthy marauder of health. It sometimes arrives slowly and insidiously, but most often becomes acute after a stressful event. It creates a full spectrum of events from mild symptoms to death. It can effect any part of your digestive tract from one end to the other in any way, from canker sores to heartburn, IBS to constipation. It can effect your mental health from brain fog to depression to schizophrenia and everything in between. It can effect your nervous system from seizures to neuropathy to neuritis. It might impact your neuromuscular system with ataxia or atonia, loss of coordination or loss of strength. It can express itself as skin rashes of all types, but especially dermatitis herpetiformis. It ofttimes is intimately involved in autoimmune diseases from rheumatoid arthritis to lupus, MS, thyroid disease and type 1 diabetes. It can cause headaches and learning problems and ADHD. It is somehow involved in autism. Failure to thrive is a desperate plea to check for GS. Some fall victim to anorexia and some to obesity. Lymphoma is the most frequent cancer. Bone diseases and “growing pains” are a tip off.
It has taken years of astute research and observation to wrestle the understanding of gluten sensitivity to this point. For 2000 years the signs and symptoms of celiac disease were the same but in the last 10 years understanding has grown by leaps and bounds. It is not easy to tackle defining this sticky octopus like creature. We all need some measure of grace and patience as we attempt to paint the changing picture of gluten syndrome and make it clear! It took me 20+ years and three medical crises to “want” to unmask this villain and expose it to full view. Even though I was a biochemical researcher and later a nutritional consultant, I had held this disease at arms length. I bear a tremendous about of guilt that I had not been more willing to plunge deeply into the mystery of gluten. It would have saved a lot more suffering in others and in my own family. My only excuse is that I had “gluten brain fog” and was completely in its addictive grasp. But now, maybe I can totally redeem myself.
Oh, and be kind to your doctor, too. It’s OK to be angry, but quickly forgive.
Thank you for joining me on this gluten free mystery adventure that I pray has a good ending.
Margery Thomas
