Monday, October 20, 2008

Gluten Intolerance

I've been wanting to do this post for the longest time and I am now finally feeling like I can because of my good friend, Gabby. Why, you ask? Because Gabby has started a blog about living Gluten-free and that is what this post is about.

As many of you know, I am gluten intolerant and possibly have celiac disease. I can not eat gluten, which is found in wheat, barley, and rye (and any derivitives of these things, i.e. flour and malt) or I get sick. Some of you might remember, I was constantly going to doctors and specialists when I was young for IBS symptoms and body aches. I was misdiagnosed with everything possible until we just finally gave up on doctors. After living with Gabby for a year and knowing her well for 3 more, I was yet again feeling sick and wondering why when it hit me that I could have a gluten intolerance. I figured this out about 2 years ago and have felt so much better as a result of going off gluten. My sister, Paige, also has a gluten intolerance/celiac disease and most likely other immediate family members do too.

The main reason I've been wanting to post this is because this is hereditary and there are a lot of relatives who read this blog. On both my mom's and my dad's sides of the family there are a lot of stomach aches, joint pain, and other conditions that are unexplained. All of which look suspiciously like a gluten intolerance to me. Especially when considering the statistics...

Prevalence of Celiac Disease in the United States (Edited to Add: I actually believe these numbers are all much higher. The U.S. is way behind other countries in diagnosing and studying gluten intolerance.):
  • In average healthy people: 1 in 133
  • In people with related symptoms: 1 in 56
  • In people with first-degree relatives (parent, child, sibling) who are celiac: 1 in 22
  • In people with second-degree relatives (aunt, uncle, cousin) who are celiac: 1 in 39
  • In the landmark prevalence study on celiac disease, investigators determined that 60% of children and 41% of adults diagnosed during the study were asymptomatic (without any symptoms).
  • Celiac disease affects 1% of healthy, average Americans. That means at least 3 million people in our country are living with celiac disease—97% of them are undiagnosed.
And these statistics are only accounting for people with celiac disease. These numbers would be much higher if they included gluten intolerance. One site suggested as many as 1 in 7 people have a gluten intolerance.

Here are some of the most common symptoms:
  • Bloating or Gas
  • Itchy Skin Rash
  • Delayed Growth
  • Headaches
  • Diarrhea
  • Constipation
  • Tingling/Numbness
  • Poor Weight Gain
  • Depression
  • Irritability
  • Mouth sores (i.e. canker sores)
  • Thin Bones
  • Fatigue
  • Joint Pain
  • Infertility
  • Discolored Teeth/weak teeth
  • Foggy brain (a general feeling of being "out of it")
And these are just a few of the 250 known symptoms. You could have a bunch of them, only one, or none at all. Many people (41% of adults) are asymptomatic.

A gluten intolerance may be the root cause of:
  • Anemia
  • Asthma/Bronchitis-Like Symptoms
  • Rheumatoid Arthritis
  • Irritable Bowel Syndrome
  • Crohn Disease
  • Colon Cancer
  • Skin Rash
  • Joint Pains, i.e., Back Pain, Neck Pain, Knee Pain
  • Osteoporosis/Osteopenia
  • Infertility
  • Depression/Anxiety
  • Fogginess of Thought
  • Difficulty Concentrating
  • Memory Problems
  • Alzheimer-Like Symptoms
  • Seizures
  • Migraine Headaches
  • Liver Disease
  • Chronic Fatigue
  • Peripheral Neuropathy
  • Thinning Hair and/or Premature Graying of Hair
Now, back to my friend, Gabby. I didn't want to do a post telling people I think they very well could be gluten intolerant without having a great source for them to turn to for help and support. I tried to do one on my own (Gluten-less Life), but I didn't have a good direction with it and when life got busy I put it on hold. Now Gabby has started a blog that fills the role of a great guide plus it's better than anything I could've done.

Gabby has been living a gluten-free lifestyle for over 20 years along with many people in her family. In my book, she's an expert on gluten-free. A lot of the sites out there on living gluten-free have a bunch of gourmet recipes and talk about buying tons of gluten-free products. That just doesn't fit into my schedule or my budget. Gabby is practical and frugal, which is why her blog is so great!

Plus, you can ask any question you want and she has (or will find) the answer. Someone recently commented on her blog that they can't eat gluten, baking soda, or baking powder. So Gabby decided to figure out how that person could make brownies without those ingredients. Genius! She really is a great resource to have. I'm lucky I've had her helping me these past 2 years.

So, I guess the purpose of this blog was 2-fold. 1- To make everyone aware of gluten intolerance (especially relatives who are much more likely to have it) and 2- To make everyone aware of Gabby's awesome blog, so they can either use it themselves or tell those they know who are gluten intolerant about it.

The blog is

If you have any questions or comments for me, please ask. I love talking about it!


Ponczoch Family said...

FYI... I think your info is a bit off as far as the percentages, not because of your lack of research, but because of how behind the USA is in diagnosing celiac. Australia, Europe, and yes, even Chile are much better at diagnosing celiac because they realize just how common it is. They also realize that if you have direct family members, it's not a matter of IF you should be tested, but WHEN. Anyway, from what I've seen it seems that when one sibbling or parent has celiac, usually half or more of the family also have it.

Bethany said...

Kim, I completely agree. Doctors in the U.S. seem to get most of their info from the drug companies these days and since this isn't treated with a drug, they don't know a lot about it. I'm going to edit my post to point out that I actually believe the numbers to be higher.

The Woolley's said...

How do you get tested and what is all involved in the testing? Is it worth getting tested and diagnosed, or would it be more effective just to go off of gluten and do your own diagnosis like you have? Is it a normal test that most insurances would cover or does is like my TMJ where they don't want to have anything to do with it? Sorry, lots of questions, and when I get a minute I'd love to check out your friends blog. I really don't know if that is my problem, but since I do have quite a few of those symptoms it just might be worth the try.

Brown Family said...

So true!! If the doctors can't treat it they don't test for it most of the time .Thankfully when Keeley was young we had some issues as they actually did test her for that( it was the last test) and thankfully it was negative and we then found out through an alternative doctor about a candida problem which is also another highly undiagnosed problem with people,and other countries are also well aware of it and treat it better than here. SO I am glad you are making people aware of things like gluten intolerance because it's allergies like these that can be easily solved when aware and certain foods can be avoided... so thanks!! Especially since we are a part of your family and need to be aware!!

Bethany said...

Amber- The testing for this is so tricky. Right now there is no test for gluten intolerance (which is more prevalent) and the test for celiac disesase is often inconclusive.

I do think it's best to try at least the blood test for celiac though because once you go off gluten the test won't be accurate. Mine was covered by insurance. The hard thing with this is it often comes back as a false negative (you are celiac, but it says you aren't). Then there's an intestinal biopsy. This is probably the best way to determine if it's a gluten intolerance or celiac disease. I didn't do this, but occasionally wish I had (it's too late now that I'm off gluten). They check to see if your intestines are damaged. I'm guessing this is the type of thing that is covered by some insurances, but not others.

There's also another new test that's supposed to be pretty good. It's a stool test. Gross, but I guess it's pretty accurate and you can get gene testing with it too. It's something you do through the mail for a few hundred bucks and some insurance companies will reimburse you (though probably not most).

With all that being said, the absolute sure fire way to know if you have a gluten intolerance is to completely go off gluten. I noticed a difference within a week, but for some people it takes up to 3 months. If you're planning on doing this, let me know and I can give you some tips.

FYI: I have yet to find a doctor who I really trust when it comes to gluten intolerance. Some have given me really bad advice (goes completely against everything you're supposed to do for it) and others just didn't know much about it. I say talk to your doctor about it, but make sure you compare what he says to trusted celiac sites online (or ask me or Gabby- we've studied up on it a lot).

The Simon Fam said...

Wow Bethany, I had no idea! My mother in law has Celiac Sprew and I've learned over the years how to cook and bake for her. Most recently was a chocolate mousse pie with a Kix crust. (Let me know if you want the recipe!) I will definitely check out that website and find other things I can make for her. She's been suffering with it for about 9 years or so, and all her kids get tested periodically, and I was recently tested as well as a "Control" test subject. I had no idea we had any history of it in the family, so I didn't mark that. I'll be more watchful for symptoms. Thank you for posting this.

Ponczoch Family said...

Ava & I both had negative blood tests in June (in the USA), but the doctors in Chile want our whole family to be completely tested (including the biopsy). The blood tests alone don't tell the whole story, sad but true. Oh, FYI, it was like pulling teeth to get the US dr.'s to even give me the referals for the blood tests because we don't have some of the more common symptoms like bloating. Maybe everyone should come & visit me & get tested;)

Dale and Marcie said...

My great uncle was miss diagnosed also but finally diagnosed correctly with gluten intolerance about 2 years ago. His was so bad that his hands were so swollen that he couldn't move them at all. I didn't realize it was hereditary though. Thanks for filling me in on that!

Maggie & Stewart said...

I work for ARUP laboratories and we have a Celiac Disease test. It is called the Celiac Disease Reflexive Panel. It pretty much tests to see if you are gluten-intolerant. Almost every clinic and hospital in the Utah valley, as well as hospitals and clinics all over the nation (we have over 2000 clients)have an account with us. I have no idea if this interests anyone but I am sure if you ask your health care provider if they send out tests to ARUP, you could probably request to have that test ran. Most likely your insurance will cover it. Anywho, that is my little spill. Thanks Bethany for posting! I have seen the Celiac test hundreds of times a month while working, but I never knew what it was for!

Brown Family said...

I am glad you have a doctor you can trust! Doctors are great and It would be a really hard life without them but it's a bummer if you get one that doesn't help with what you need! So Yeah for the great one's that we find!!

SicklyGothGirl said...

I would actually love to try to go gluten free for a while, but I need to wait a few weeks to work on my cholesteral. And, I'm not sure how I would do it since I'm allergic to Citric Acid and it's really common...Thanks for the link and stuff though!

Kristin said...


This is Kristin (Sorensen) Sanders and my blog is (I found you through Brooke.) I love your gluten-free blog! I don't have celiac, but I agree that everyone can benefit from that kind of diet! Thanks for all of your advice and smarts! :)