The Basics: Do I have a gluten allergy or gluten intolerance? Or am I just sensitive to gluten?
The Basics: Do I have a gluten allergy or gluten intolerance? Or am I just sensitive to gluten?
Introduction
Despite what a lot of people think, gluten is actually a protein naturally found in some grains (all kinds of wheat). Its role is to help food maintain its shape and acts often as a binder. According to the celiac foundation, this list comprises all kinds of wheat including “wheat berries, durum, emmer, semolina, spelt, farina, farro, graham, KAMUT® khorasan wheat and einkorn), rye, barley and triticale.” It also includes other grains such as rye and barley.
There is quite a bit of confusion out there with people who can’t eat gluten for reasons that span from allergy to celiac to sensitivity and intolerance. So what are all these things and how does one net it out?
I am not a doctor and should you have any questions, please be sure to consult a medical professional. I do, however, have a family that spans the gamut of these diagnoses.
Before we dive in, let's first get the foundational definition framework set.
An allergy (to anything) is typically defined as when the body’s immune system reacts to something. This reaction can be life threatening or not life threatening.
An intolerance or sensitivity is typically defined when the body has a chemical reaction to something.
Celiac disease is defined as “Celiac disease (CeD) is a genetic autoimmune condition that mainly affects the gastrointestinal tract when gluten is ingested. Gluten is a protein found in wheat, barley, and rye. When someone with CeD eats gluten, the lining of the small intestine becomes damaged and is unable to absorb nutrients properly” according to the National Celiac Association.
So, I personally kind of think of celiac disease as a specific type of gluten allergy which has a severe (and sometimes silently severe) reaction. I know of some kids who have this actually stop growing because they do not absorb any of the nutrients they need to grow and be healthy. It can be silent and very scary.
Let’s dive down a little bit more into each one.
Gluten Allergy
As I stated earlier, a gluten allergy is defined as an immunological response to gluten. This means that the immune system responds by overproducing antibodies to “attack” the gluten. The antibodies IgG and IgA are often tested in the blood first. This is actually how I was initially found to have a gluten allergy. (Mine was apparently “off the charts!”)
Often this is coupled with a genetic test (see below for Celiac testing).
Gluten Intolerance or Gluten Sensitivity
Gluten Intolerance or sensitivity is a reaction that the body has when it ingests gluten. In the case of my husband, he manages to still be able to eat it - just with some discomfort.
What is confusing to most, is that in the diagnostic world of gluten allergies, if you don’t have Celiac disease, but do have a gluten allergy, you actually have “non Celiac gluten sensitivity.” And this definition is apparently associated with a very wide spectrum of reactions.
There is me, if I have a crumb of gluten accidentally, it will send me down for the count for 24 hours and yet…I am also clinically defined as having “non Celiac gluten sensitivity.”
Whereas for my husband, he just maybe has an upset stomach for about 30 minutes.
To be clear, someone who is “gluten intolerant” is also “gluten sensitive” but there is clearly a spectrum of reactions.
Celiac Disease
So this is the most severe gluten reaction of all. This condition, as I stated earlier, is actually when the immune system has a visceral reaction in the stomach.
Within the stomach the immune system creates antibodies that end up attacking the lining of the stomach (specifically the “villi” of your stomach). Villi actually have an important purpose, by absorbing nutrients and then taking them into your bloodstream. When these are damaged then it prevents your body from obtaining the nutrients for your body. Basically, you are “starving” your body without knowing it (in some peoples’ cases). In other cases, people feel sick and know that something is wrong.
One of our relatives was diagnosed as a pre-teen because they were not growing but crazily showed no other symptoms. Thankfully his mom had the fortitude to think something was wrong and insist that the pediatrician test for celiac.
I cannot emphasize enough how incredibly important it is to be officially diagnosed by a medical professional.
It includes the following steps:
Blood test for the antigens. This involves testing for the levels of IgG and IgA antibodies in your blood. This assumes of course you have been eating gluten. If you have not, or not a normal amount, then this may not show up. As in the case of my daughter we actually never tested her blood antibodies because she was actually off gluten already. (She is not celiac.)
If this is positive, an endoscopy is performed. This involves a medical doctor using a long tube that goes down your through to take pictures of your intestines and then also they capture a small biopsy to test the villi.
In my case, when I had this procedure done, even though I had a positive blood test, the endoscopy was negative for celiac. It was ironic because prior the procedure, the GI doctor told me that regardless of the result, just based on my blood results, he said I ought not be eating any gluten. Hence my diagnosis of “non Celiac gluten sensitivity.”
For some signs of possible celiac disease please check out this resource at BeyondCeliac.org
Conclusion
So let’s net this out.
You may be gluten sensitive or intolerant but NOT have a gluten allergy.
If you have a gluten allergy then you ARE gluten sensitive and intolerant.
If you have celiac then you also have a gluten allergy and are sensitive and intolerant. (Just extremely sensitive AND completely intolerant.)
I can draw a venn diagram too for those of you who might be more visually inclined ;-)
I hope this helps to dispel the myths and confusion around all of these labels. Unfortunately they are real situations for people and these conditions tend to be genetic in nature. More on this in a later post!
Please see some resources and references below:
Resources:
Celiac.org
https://celiac.org/gluten-free-living/what-is-gluten/#:~:text=What%20is%20Gluten%3F,-Share
Harvard School of Public Heatlh
https://www.hsph.harvard.edu/nutritionsource/gluten/
https://medlineplus.gov/ency/article/000821.htm
Johns Hopkins Medicine https://www.hopkinsmedicine.org/health/conditions-and-diseases/food-allergies
https://www.hopkinsmedicine.org/health/conditions-and-diseases/celiac-disease
https://www.mayoclinic.org/diseases-conditions/celiac-disease/diagnosis-treatment/drc-20352225
National Institute of Health on Testing for Celiac https://www.niddk.nih.gov/health-information/professionals/clinical-tools-patient-management/digestive-diseases/celiac-disease-health-care-professionals