From January 2015 Newsletter: There is a lot of misunderstanding out there about what really happens to a Celiac when they consume gluten. My experience and the experience of most of my customers is the unintentional invalidation from others about how severe the reaction can be. Invalidation is the last thing we want to hear! After a year or so, a person with Celiac Disease or Gluten Sensitivity comes to recognize the symptoms and they usually vary in severity from person to person, but each person tends to experience the same symptoms each time, so we know when we get “glutened”. It is not the same thing as anything else, it is a simple cause and effect and when it happens enough times, we know exactly what it is! Just like when you have had a few colds in your life, you know exactly when you have the next one, you don’t need someone to ask you if you are sure that you really have a cold!
The reactions that I experience tend to be the same, but the severity varies based on how much gluten I accidentally ingested. First, I will use my situation as an example (most of our customers say they experience many of the same symptoms). Then, I will give you the science behind the reactions, explaining why this happens.
Within 4 hours of accidentally ingesting gluten, acid reflux starts; it is like a burning from my intestines all the way up to the back of my throat and no amount of Tums or prescription anti-acid drug could put out this fire! (Back before I knew I had Celiac, I would do what many do; eat plain saltine crackers to help settle my stomach; this was just making things worse). Pretty quickly a headache starts to set in, which will become severe the longer it goes on and I need to stay in a dark room because light makes it worse. Nausea sets in, sometimes I vomit, sometimes I don’t. Actually, I try not to vomit because the vomiting is so violent for me; I often lose control of my bowels at the same time and that is the worst part.
Within 5 or 6 hours, my heart will start to race, it is like I can feel the blood pulsing through my veins, especially in my thighs. Then, I get knife like pains in my stomach, it is usually worse on the right side and then the loose bowels start and my abdomen distends. When I have to “go”; it is hard for me to hold it in. So, when I have to go, I better be in a bathroom within 30 seconds.
The next day, the severe fatigue sets in; holding my head up is an effort and sometimes my joints hurt. All of the above symptoms are still going on as well. I take Tylenol for the migraine headache, but all I can do is drink water for the rest of the symptoms and try to flush out my body.
By day 3 severe constipation sets in, making me not want to eat, because I know it won’t come out of me. Then “brain fog” will set in, where it is difficult to speak (hard to find my words) and sometimes I get lightheaded and experience virtigo and often walk into doors and trip over my own feet (this can last a week). I can’t go to work or get off the couch. My stomach is still distended.
By day 4, an itchy rash starts on my scalp, then my buttocks, sometimes it will get my arms, face and abdomen as well. I have had it on my ankles a few times. With a severe “glutening”, by day 4 or 5 I will have mouth sores.
After 2 weeks, I will feel like I am getting back to normal. By week 4, the mouth sores have cleared up, but the skin and scalp rash takes about 6 months to completely go away. The itchy rash oozes if I scratch it and then scabs over. Washing and brushing my hair is painful and I have to be extremely careful so it won’t start bleeding. After 6 months, I am rash free as long as I don’t get “glutened” again!
Gliadin is a protein found in Wheat, Rye and Barley. It contains amino acids which trigger the autoimmune reaction that causes Celiac Disease and the symptoms associated with CD. When a Celiac consumes gluten it causes a complex set of events that result in the production of auto-antibodies that can damage the intestines and cause DH (dermatitis herpetiformis). There are two autoimmune antibodies found; IgA and IgG which are Immunoglobin A and Immunoglobin G.
In a healthy immune system the IGA and IgG would identify germs or other foreign “bodies” and neutralize them. However, in an autoimmune disease, like Celiac Disease, they will “turn” on the tissue that they would normally protect. IgA is involved in the immune processes of the skin, mucosal tissues of the small intestines and other mucous membranes. This can result in damage to the lining of the intestines causing vitamin deficiencies and other serious complications and it can also manifest solely via DH on the skin. (25% of those with Celiac Disease also have DH)