Celiac disease (CD) is an autoimmune system response to gluten which can damage the small intestine. Gluten is a protein found in wheat, barley, and rye. Added gluten is often used by commercial bakers to make breads rise faster.
So why are so many people claiming major benefits from going gluten free? I am usually dubious of the latest diet craze but …
I discovered that my usual morning congestion vanished after the first two weeks of a weight loss diet which had eliminated bread. It occurred to me that I had inadvertently been gluten free. So I asked a cousin who had given up gluten about her experience and she explained that her perpetual debilitating sinus infections were gone now. Still dubious, I added bread slowly back into my diet. One ear infection and much congestion later, I started to think that gluten might actually be a problem for me.
I wondered if there was anything reported on this in my DNA. I opened my latest 23andme Genetic Health Risk report (under the top menu item Health)
(red arrow added by me) and saw that I have an increased risk for celiac disease:
When I clicked the Slightly increased risk to get the report I saw this:
It is important to understand that having a genetic variant associated with a disease does not mean you will get it, just that you are more at risk. There are usually many other factors that are needed to cause the condition. Science is still at the very early stages of figuring out the roles our genes play in various diseases.
My initial research suggests that people with celiac disease (CD) just about always have one or both of these variants, however having them does not guarantee that you will have gluten issues.
Here is a link to the 23andme blog post about CD:
According to the EU Science web site eurogene blog
… more than 97% of celiac sufferers have one or both of these HLA variants “and the number of alleles also influences the risk of developing the disease. Having said that, roughly 30% of the population carry one or more of these alleles but the prevalence of CD is only around 1-2%, so the HLA alleles are necessary, but not sufficient, for the development of celiac disease. “ However it also mentions “The majority of people with CD don’t even know that they have it, only about 10-20% of cases have been diagnosed, the rest remain undiagnosed for a variety of reasons, mainly because symptoms are not yet so severe that they lead to diagnostic testing.”
Apparently Europe has been dealing with this issue longer than we have; many of the best gluten free products are imports from Italy where they are very aware of celiac disease (CD) according to several of my gluten sensitive (GSD) friends who have traveled and eaten there. Another friend said it was easy to eat gluten free in London.
Naturally the next thing I did at 23andme was click on the blue scientific details link further down the Celiac report page which took me to a page with these details:
I noticed that I could click on the rs numbers in blue to get to the raw data page where it would show me more detail like the physical location on chromosome 6. There I saw that I had only one copy of each of these variants as already indicated on this initial page.
Next I checked my dad’s results as well. He has one copy of each of the same variants that I do. Checked my maternal aunts, since my mother was never tested, no variants for Aunt S and one variant for Aunt T. My brother who has severe congestion issues also has two variants but both of his are for just the HLA-DQ2.5 haplotype – one from each parent! Two of my Hordaland Norway third and fifth cousins have just one of that variant while several others have none.
I checked my Ancestry DNA results as well by opening the raw data in a spreadsheet program and doing a search for first rs2187668 (C/C is normal) then rs7454108 (T/T is normal). Yes they are both T/C – no error. You can do this search in any company’s results but these SNPs may not be tested by everyone.
Next I started wading through the scientific publication synopses looking for any association with congestion. I did not find that, but I did find an association with other autoimmune conditions. Many non-science backed articles mentioned the congestion issue, all with a similar statement, whose source I could not find, that sounds plausable:
“Gluten may trigger an exaggerated immune system response that causes the production of histamine in the sinus cavity. When gluten enters the body, the immune system mistakes the protein for an invading substance. It reacts to gluten the same way it would to an infectious organism, such as a bacteria or a virus. Antibodies are created to attack the gluten, which trigger white blood cells to produce histamine. Histamine helps protect the body from infection, but in high quantities it causes swelling, irritation and inflammation. ” – from https://www.livestrong.com/article/542319-gluten-nasal-congestion/
My go to web site to understand specific SNPs is SNPedia so searching there for those SNP names, I found this page on celiac disease: https://www.snpedia.com/index.php/Celiac_disease
This statement caught my eye,
“Although the HLA-DQ2 and DQ8 haplotypes are associated with gluten intolerance, as a 2010 blog post indicates, the frequency of these haplotypes (20-30%) is much higher than the frequency of celiac disease (~1%), so perhaps the primary value of SNP testing in this context is to rule out the likelihood of gluten intolerance.”
My other go to website is the NIH where I found this article (via SNPedia) that explained the other problem alleles, type HLA-DQ2.2, that are useful tags for the CD condition (rs2395182 and rs7775228 tested at 23andme but not Ancestry DNA. ): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2386975/
Convinced that there might really be a genetic reason for my gluten issue I have chosen to continue my eating experiment. I have ordered various gluten free breads and noodles from Amazon. I like rice noodles anyway and look forward to making my peanut sauce Thai dishes more often. So far the breads are not as nutty and delicious as my favorite gluten rich types, but I will manage.
Here are some of the more interesting articles I found during my research:
On Gluten sensitivity
One interesting article has linked retroviruses with celiac activation
WebMD points out that you can get celiac disease at any age
23andme cites this article – Celiac Disease and Nonceliac Gluten Sensitivity: A Review.
How to go gluten free
From the celiac disease foundation
Link to a good summary PDF
Cooking gluten free
Recipes from the celiac disease foundation:
My Gluten Free Kitchen looks like a good blog
Most keto recipes are gluten free
I grew up with wonderful German flourless chocolate cakes. I have not yet tried any of the recipes out there but these look very good:
Be sure to use a gluten free baking powder!
Both the genes I have and I have celiac disease. Ever since I was a child, I had a lot of trouble with my stomach. The doctor told me I had a nervous stomach. So, as a retiree, my doctor discovered gluten allergy. I did not have a single bowel duct in my stomach. Then I also had wounds in the stomach and two in the esophagus. Every morning I was as sick as a pregnant woman. When I was pregnant I was always sick in both in the evening and in the mornings. Sometimes I think that if this had been discovered before, the kids would get better conditions during pregnancy. They were so small when they were born, and I used regular small size clothes. I’ve gotten better after getting gluten free food. Restaurants say they have gluten-free, and then they often say it’s on the Menu (the list), but they do not have it.
The bread from Baker Hansen in Norway is particularly good. You can buy it in Drammen. They have a sunflower bread, it’s delicious and does not resemble other gluten-free bread. Many gluten-free breads are like chewing gum on the teeth, but the sunflower bread is really good! The state gives until those days 2000kr to each person having celiaci
Otherwise, oats from the USA are very ok together with lactose-free milk.
Now we have got ice cream on sticks in Norway that tastes very good, they are Gluten Free and Lactose Free.
I have the same result presented to me by 23&me in the last 3 months. Promethease.com told me about this condition 6 months ago. I have given medical genetic workups I’ve done on Promethease by summary 4 to 2 and by disease (I analyzed about 9 different problems – HBP, Cholestrol, Celiac, etc.
My interest was amazed and we use updated reports whenever I do an update. There are things we are “watching.” My interest also took my complaint about being anxious, she looked down the new summary saw that I metabolize caffeine slowly. She asked how many cups of coffee/day I drank. I said 4-6 cup. She said go to 1 cup and drink decaf green tea the rest of the day – reduce anxiety and tea is high in antioxidants! I did/do that and my anxiety is reduced!
I love my coffee but as a slow metabilizer I never drink it after noon, my 3-4 cups are all half decaf!
Yes Promethease is another way to get medical information from ancestry results and I probably should have mentioned it
My celiac was diagnosed with genes, one donated from each parent (by a lab in Texas before I got into genetic genealogy). After going GF in 2007, I no longer have sinus infections nor migraines. Celiac also caused early osteoporosis as my levels of vitamin D3 were severely low and thus little to no calcium could be processed. After bringing that back up to normal, the deep bone pain and chronic nosebleeds disappeared. I had no idea what was causing them. Celiac is often called the “great pretender” as there is a multitude of symptoms or conditions caused by deficiencies due to malabsorption and people don’t realize it. I’m glad you got it figured out, Kitty. There is no going back as untreated celiac can cause cancers in the GI tract and there is no reason to let that happen!
I do not have CD, but am gluten intolerant. 12 years of problems before I discovered that my symptoms were similar to gluten intolerance. I tried going gluten free and though I look at cheese danish with envy, it is not worth how ‘ill’ I get when I have even a crumb of wheat flour. It is easy to live with at home, once you get used to it. Eating out is much more of a problem. My tip: ALWAYS say you are ALLERGIC to wheat, and they will take you much more seriously. Watch out for hidden sources, like flour encrusted french fries, and SOY SAUCE. Pot lucks are the worst — you can never find the person who brought the food to ask what is in it. When going to someone’s house, offer to bring your own gluten free bread and crackers — so simple, and it alleviates so much hostess hassle! In San Diego area, try the Canyon Bakehouse breads — they are the best by far, especially their bagels and rye bread. Bean curd noodles are a great substitute for spaghetti. Good luck, Kitty.
Thanks Teri, that canyonhouse gluten free bread is really pretty nice, much like pepperidge farm white bread even though it is multigrain. Made in Colorado and available from Amazon – my affiliate link for it: https://www.amazon.com/Canyon-Bakehouse-Heritage-Style-Gluten/dp/B0735JCYWT/ref=sr_1_1_sspa?ie=UTF8&qid=1537819085&sr=8-1-spons&keywords=canyon+bakehouse+gluten+free+bread&psc=1
Definitely something that I need to watch for, my biological father passed away at 60 years old in 1992 due to the complications of the then pretty much unknown Celiac disease ,all my half siblings were tested and none were predispositiond for the disease, he suffered a horrible death due poor understanding of CD…. Never got to meet him
So sorry for your loss Steve.
It is fascinating how much we are learning these days about genetics and disease
Thank you Kitty, I did meet 5 half siblings, one brother has passed on two years before I discovered them on my paternal side and a brother and sister on my maternal side, lots of secrets and lies made my search for my paternal half very difficult… 46 trees later it was undeniable, along with a few more test kits, all is well that ends well
I weighed 27 pounds when I was 5-years-old – and I was always famished. Went on a gluten-free diet in 1974. Been gluten-free since then. My mother and my daughter and several other females in the family have had problems with gluten. No problem on the male side. I get my gluten-free bread from a Florida bakery via my local health food store.
You mention problems with caffeinated coffee. I am one of the opposites with coffee. I can drink caffeinated coffee any time of the day or night and not have any problem sleeping.
I stumbled onto my gluten sensitivity in about 1990 when I did a eight hour fasting glucose tolerance test. Throughout the fasting day I was amazed how clear my thinking became and my nasal congestion diminished. After the completion of the fasting test, I eagerly targeted the local sandwich shop. Within 10 minutes of finishing the sourdough and tuna sandwich, my mental fogginess and stuffy nose returned. The light bulb comes on! Why not eliminate bread and pasta for a few days to see how I feel? The mini experiment left me feeling I felt so much better without wheat in my diet. Periodically I’ve retested my hypothesis with the same onset of brain fog and congestion. I haven’t yet looked into the genes mentioned above but it wouldn’t change my mind about my body’s undeniable reaction to wheat. FYI Healthy Creations Restaurant in Encinitas, CA bakes their own versions of delicious GF bread in addition to having a completely GF menu. Great find!
Thank you all so much for sharing your experiences. I apologize for all the bad thoughts I ever had about this “fad,” which I now know is real for so many.
I have notified my entire extended family of their genetic standing and suggested that they all try the experiment of going gluten free for a week and seeing what it does for them.
I’ve been having sinus congestion, causing pain behind my eyes, and migraines. I checked the SNPs you mentioned and sure enough one is normal, one is not. My Mom was diagnosed with Celiac decades ago. I checked and we both have the same variation. Maybe it’s time for me to go completely gluten-free.
How to make gluten-free bread?
Honey, I do not know how to make gluten free bread. I buy Canyonland bread and rice cakes …
I have recipes from Norway, i suppose. My e-mail is email@example.com.