Friday, September 25, 2009

Should YOU be gluten free?

OK everyone....time to talk a bit more about autoimmune diseases in general and celiac disease in particular. Of course, I've posted on this topic before, but now that I've been (almost) diagnosed with lupus, I've been thinking hard about all of my health issues and how they intertwine....and also about this gluten-free journey I've been on since last November.

So now I want to have a chat with you.

Of course, because of the lupus thing, I've been very discouraged and depressed for several days now, but I'm starting to pull out of it. Hey, I suppose things could be a lot worse, right?

One thing that's been really bothering me is that I thought the gluten-free diet would help me more quickly with all of my autoimmune diseases and associated problems like fibromyalgia. And now I have a NEW diagnosis (well, almost). So what's up with that???

But I have to face reality and realize that, if I do have lupus, I've almost certainly had it for quite a while, and just now noticed it during a flare-up. Systemic Lupus Erythematosus (SLE) has a lot of symptoms that overlap with many of my other medical conditions, including celiac disease and fibromyalgia. It usually takes people years to be diagnosed; it's not reasonable for me to think that I just woke up with lupus two weeks ago out of the blue.

So, now let's talk about how in the world I got to this did I develop SO FRIGGIN' MANY AUTOIMMUNE DISEASES?? Just in case you don't know, I have Hashimoto's thyroiditis (autoimmune thyroid disease), psoriasis (autoimmune skin disease), rheumatoid arthritis, celiac disease, autoimmune hepatitis plus asthma and fibromyalgia. Asthma and fibro aren't technically considered to be autoimmune but they are certainly closely associated with autoimmune diseases.

BTW, I thought I might have Sjogren's Syndrome too (another autoimmune disease) but apparently not! Which is good news!! :)

And now I may (probably do) have SLE.

Celiac disease is almost certainly to blame for all of these.

Why do I say that?

As I've mentioned before, researchers have discovered that during active celiac disease, an overabundance of a cytokine called zonulin is released. Cytokines are in a category of "signaling molecules" that are used to help communicate and coordinate activities between cells.

Zonulin regulates the permeability of the intestine, which means that when the levels of zonulin are too high, as in celiac disease, it literally causes the intestine to "leak". (Ewww!!)

Foreign substances such as gluten and other allergens can get from the intestines into the bloodstream during periods of excess zonulin, and this apparently can cause the immune system to go into high gear and even become confused as it begins to attack the foreign invaders. Eventually it's so confused it starts to attack vital organs instead, and *boom*, you have an autoimmune disease!

Well, so I have another diagnosis. I'm still committed to the gluten free diet, now more than ever!

I truly believe that if I had known I had celiac disease 30 years ago, and had been on the gluten free diet ever since, I would not have developed most of my current autoimmune diseases. But I wasn't diagnosed with celiac until I was 52! :(

(30 years ago I was told I had IBS.....yeah, right!)

Some researchers believe that even if you've begun to have organ-specific auto-antibodies circulating in your bloodstream (for example, my daughter Robin has the Hashimoto's anti-thyroid antibodies although her thyroid is not yet damaged), if you go gluten free you may reduce or eliminate those auto-antibodies.

So I'm posting this in the hope that I might make a difference to someone else somewhere in the world....if you or any members of your family suffer from an autoimmune disease and/or any of the diseases and disorders listed below (particularly if you have more than a couple of these!), you should seriously consider going gluten free too!

A List of Diseases/Disorders Probably Associated With Celiac Disease:

* Addison's Disease
* Alopecia
* Anxiety and Depression
* Ataxia
* Attention Deficit Disorder/ADHD
* Autism
* Autoimmune hepatitis/Chronic Active Hepatitis
* Bird Fancier's Lung
* White-Matter Lesions of the Brain
* Cerebellar atrophy
* Chronic Fatigue Syndrome
* Crohns Disease
* Congenital Heart Disease
* Cystic Fibrosis
* Dental-enamel hypoplasia
* Dyspepsia
* Epilepsy (with or without cerebral calcification)
* Farmer's Lung
* Fibromyalgia
* Fibrosing Alveolitis
* Follicular Keratosis
* Gall Bladder Disease
* Gastroparesis
* Head Aches (Migraine)
* IBD - Irritable bowel Disease
* Impotency
* Infertility
* Inflammatory Bowel Disease
* Lung Cavities
* Multiple sclerosis
* Myasthenia Gravis
* Pancreatic Disorders/Exocrine Pancreatic Insufficiency
* Peripheral neuropathy
* Polymyositis
* Polyneuropathy
* Primary biliary cirrhosis
* Pulmonary Hemosiderosis
* Recurrent Pericarditis
* Sarcoidosis
* Schizophrenia/Mental Problems
* Scleroderma
* Short Stature, Delayed Puberty
* Small-intestinal Adenocarcinomas
* Spontaneous Abortion and Fetal Growth Retardation
* Systemic Lupus Erythematosus
* Thrombocytosis (Hyposplenism)
* Thrombocytopenic Purpura (ITP)
* Thyrotoxicosis
* Vasculitis
* Vitamin K Deficiency

A List of Diseases/Disorders Definitely Associated With Celiac Disease:

* Abdominal Distention
* Abdominal Pain, Steatorrhea
* Anemia - Folate-Deficiency/Iron Deficiency/Pernicious
* Arthralgia or Arthropathy
* Arthritis - Rheumatoid
* Carcinoma of the Oropharynx, Esophagus, and Small bowel
* Collagenous Sprue
* Dermatitis Herpetiformis
* Diabetes (Type 1)
* Diarrhea
* Down Syndrome
* Enteropathy-Associated T-cell Lymphoma
* Failure to Thrive (children)
* Hypertransaminasemia
* IBS - irritable bowel syndrome
* IgA Deficiency
* IgA Nephropathy
* Kidney Disease
* Liver Disease
* Microscopic colitis/Collagenous Colitis
* Nerve Disease
* osteomalacia, osteoporosis and osteopenia
* Recurrent Aphthous Stomatitis, Recurrent
* Refractory Sprue
* Sjogrens Syndrome
* Thyroid Disease (autoimmune)
* Ulcerative Jejunoileitis

Note: these lists came from this website.


Kathryn said...

My mother has SLE but she has no interest at all in a GF diet. Or in a diet that would help her not require pills to get thru the day. For some folks the quick & easy way is all they are willing to try.

I've another friend who is "classic" for celiac - can't gain weight, often ill, very thin. I've encouraged him to ask his doc about celiac (& if he is it should have been diagnosed years ago) but i don't know if he will. And i think he will have a hard time making the switch because he relies on grains for most of his diet.

Good for you for making the change! I know for some folks it is a no brainer - you make the change & feel better. For others of us it is more of a struggle. I haven't had the dx of celiac, just "sensitivity" & so thought that i could have a little bit now & then & be ok. I was wrong.

Thank you for sharing. I hope the docs have an answer for you soon.

JoAnn said...

Hi Kathryn,

Thanks for your comment.

Sorry about your mother and your friend...we all know people who refuse to think about changing their diets to see if it will make them feel better!

I have a co-worker with Crohn's Disease, and have shared medical articles and other info with him about how the gluten free diet is beneficial for those with Crohn's, but he won't try it. Yet anyway.

Good luck with your own efforts to be gluten free....if you are gluten sensitive, you'll definitely feel better if you can truly eliminate all gluten!


Heather @CeliacFamily said...

Great article, JoAnn. I, too, was "diagnosed" with IBS - about 15 years ago. It wasn't until my son was diagnosed with Celiac Disease that I started on the gluten-free diet myself. The list of diseases and disorders associated with Celiac Disease is amazing isn't it?

JoAnn said...

Thanks Heather...yes, it's really quite a list of illnesses. Celiac disease can do so much damage!