Monday, March 9, 2009

The Gluten-Autoimmune Disease Connection (or why I'm gluten free)

Warning: LONG POST

I've posted a few comments here and there about my health, but it occurs to me that it's time to post again, for the possible benefit of those who may be new to this, or just exploring the idea of going gluten free.

I just spent a significant amount of time writing a lengthy email to my cousin who lives in another state about our family history of autoimmune diseases and why everyone in our family should probably be on the gluten free diet. The pertinent part of this email is posted below (I've deleted the names of my cousin and her other family members because I haven't asked her if it's OK to post any info about her family):

Dear ****,

Thanks for your reply....I did know about Aunt ####'s TB, but I didn't realize she had diabetes too. So Aunt #### was never formally diagnosed with lupus? Actually, I've read that people with lupus are much more likely to suffer from strokes than those without lupus.

Do you mean your mother had Reynaud's syndrome? Reynaud's syndrome is frequently associated with lupus, and lupus also can cause severe kidney damage, unfortunately.

Your mother $$$$ was the person who told me that she and #### both had lupus and Hashimoto's thyroiditis. We had a nice long phone conversation several months before she passed away.

I'm trying to remember exactly how she said it....I guess it's possible that what she was telling me was her own opinion about ####'s medical problems, and not a doctor's diagnosis. We were discussing our family's tendency to develop autoimmune diseases. That phone conversation was my first clue that we were all at risk for serious medical problems, but of course I didn't realize at that time that I would develop so many more autoimmune diseases later in life!

During that same phone call Aunt $$$$ also speculated about the possibility my father might have had lupus too (undiagnosed). My dad died of congestive heart failure. It's true that lupus can attack the heart, and that those who die of complications of lupus frequently die of congestive heart failure, but I think that a lot of his health problems were more due to the fact that he smoked three packs of cigarettes a day practically his entire life. It's rarer for men to develop lupus, although it can happen.

I'm so sorry to hear about your daughters' medical problems; I have RA too, so I know what that's like! And my daughter Robin has scoliosis.

****, have any of your family members ever had stomach problems or a "sensitive" digestive system or been diagnosed with IBS (Irritable Bowel Syndrome)? I need to share some more info with you about our autoimmune problems.

The reason I asked about stomach problems or IBS is that we've discovered that most of our family members are doing SO much better on a gluten free diet. Gluten is a protein found in wheat, barley and rye and people who have a certain autoimmune disease called celiac disease have to avoid gluten.

According to the medical articles I've been reading, there are literally millions of people who have either celiac disease or some sort of gluten intolerance who have never been diagnosed....usually doctors tell them they have IBS (that's what they told me!). People who are the most likely to have celiac disease are those like us - with a family history of autoimmune diseases.

I just wanted to tell you about it because of the research that has linked celiac disease (which is an autoimmune disease of the lining of the small intestine) to the development of other autoimmune diseases. Without going into too much detail, the current theory is that celiac disease is the first autoimmune disease that a person usually develops...frequently in infancy or childhood.

Celiac disease not easy to diagnose, because the symptoms from person to person can be very different: one person may have diarrhea while another may have chronic constipation. One person may be very thin while another may be obese. One person may have skin problems and break out all over in an itchy rash with little blisters (this is called dermatitis herpetiformis), and another may have neurological sympoms (almost like multiple sclerosis or something) such as vertigo, headaches, blurry vision, hand tremors and difficulty speaking and walking. And many people have no symptoms at all, which is called "silent" celiac disease. Since celiac disease interferes with the absorption of vitamins and minerals, celiacs frequently have vitamin deficiencies and problems like osteopenia or osteoporosis.

In any case, the only treatment for celiac disease is to avoid gluten. If left untreated, current research says that celiac disease literally causes the intestines to start "leaking" foreign material (like gluten, or viruses or bacteria) into the bloodstream. Your body reacts to these foreign invaders by kicking the immune system into high gear, so to speak. The immune system begins by attacking the invaders but can become confused and start attacking your organs, like the thyroid, liver, heart, kidneys, even the brain....this is essentially how celiac disease creates the conditions that lead to the development of other autoimmune diseases.

All of this makes so much sense to me....I remember having gastrointestinal problems my whole life, so I've probably had celiac disease since I was a kid. And I developed asthma, psoriasis, and Hashimoto's thyroiditis by the time I was in my twenties, and then recently (I'm 53) I've been diagnosed with autoimmune hepatitis, rheumatoid arthritis, and fibromyalgia.

I don't know if you've ever heard any of this before, and I'm definitely NOT trying to tell you what you or your family should be doing, but I wanted to share what we've learned and how we've been dealing with our medical problems.

I'm feeling better and my adopted daughter Emma (my biological grandbaby) has had her eczema clear up completely after just a few weeks without gluten.....I've only been gluten free since November 25, 2008 and Emma since January of this year.

My daughter Cheryl (who has lupus) is also feeling much better gluten free, and Robin and her whole family are on the gluten free diet because her daughter Carly has been diagnosed with celiac disease. I told Robin that her level of thyroid antibodies could go down if she was gluten free, according to the latest research; so the diet could actually save her thyroid from being damaged. Robin has the Hashimoto's antibodies in her bloodstream but her thyroid hasn't been seriously injured yet.

Of course we continue to see doctors and take the medicines that they prescribe for us; I see my hepatologist, rheumatologist, gastroenterologist, neurologist, and my primary care physician, but they have ALL encouraged me to go gluten free....they too believe it's the way to go for people with autoimmune diseases.

Plus I have a friend who has rheumatoid arthritis who is gluten free and her RA went into remission on the diet! She doesn't need to take medication anymore....which is very exciting! I have heard that it can take a year or two for RA and fibromyalgia to go into remission on the gluten free diet, so I have to be patient.

I should warn you that the blood tests and biopsy for celiac disease frequently give negative results, even when the person being tested does have celiac disease. The best way to tell if you have a problem with gluten is to stop eating it for a few weeks, then try eating gluten again. If you feel better without gluten and then have a bad reaction when you try it again....well, then you know (unless you are one of those people with silent celiac).

We just discovered, completely by accident, that my husband Paul has a gluten problem. We had absolutely no idea that he was gluten sensitive before this. Since I put the entire family on a gluten free diet, he hadn't had any gluten for several weeks before Superbowl weekend. Anyway, he decided to buy a six-pack of beer for that weekend, and he finished it by drinking one or two bottles per day for a few days. Beer is made with barley, so it has gluten in it and celiacs can't drink it (they do make gluten free beer, by the way, but Paul didn't know he had a problem).

A few days after drinking the beer, Paul broke out all over in the nastiest painful itchy rash which his doctor diagnosed as psoriasis but to me looks more like dermatitis herpetiformis (the celiac-related blistery rash). It's been slowly getting better but we ate some take-out food a few days ago that was supposedly gluten free but must have been contaminated by small amounts of gluten because I developed headaches, vertigo and diarrhea (always a sure sign that I've accidently eaten something with gluten in it) and Paul's rash started to flare up again. So now we're sure that he should completely avoid gluten.

Just to let you know, the gluten free diet seems very hard at first...but it's really not that bad. People hate the thought of giving up wheat breads and pastas, etc, but the nice thing is that Whole Foods Market sells all kinds of gluten free foods like rice pastas which taste very good, and I've learned to make wonderful gluten free bread. I think now I can make almost anything gluten free, so we don't feel deprived. And many foods are naturally gluten free anyway: meats, poultry, eggs, fish, vegetables, a steak, baked potato, and green salad can be an easy gluten free meal (no croutons on the salad and use gluten free dressing). Also, we love Mexican food, and corn chips and corn tortillas are usually gluten free (we read the labels though).

The hardest part is going through your kitchen and throwing away gluten foods and then scrubbing the cupboards and buying new cookie sheets, cutting boards, wooden spoons, plastic containers, toaster, etc., etc. Anything that could have the smallest amount of gluten hiding in a crack, crevice or scratch has to be replaced. Also, shampoos, soaps, and even medications can have hidden gluten in them; you have to research it on the Internet but luckily there are people who are way ahead of us who have already done most of the work...if you decide you want to know more about it, please check out the forum on

It's a great place to ask questions and find out more about being gluten free.

Well, this email is now WAY too long! I apologize for being so verbose, and rattling on and on, but I really wanted to share this with you. I hope you don't mind! :)

Well, take care.....I hope to hear from you again soon!

Your cousin,

1 comment:

Astrid said...

Hi Joann!! Thanks for leaving a message for me today :)

I was touched by your letter to you cousin. You seem to meet your health problems with such a lighthearted and strong spirit! I am glad your are feeling better and that the glutenfree living makes your days brighter and better.

xx. Astrid