Exciting stuff! Diseases! Comorbidity! Genetics!

I know, I know.  If all you have is a hammer, everything looks like a nail.  Every time someone has digestive trouble, it sounds like celiac disease to me.  And, it’s not necessarily.

But, semi-recently, I was doing some Googling for a guy (your Dad, Luke! ) who has a couple autoimmune diseases, plus some symptoms that sounded an awfully lot like celiac disease, which, if you didn’t know, is an autoimmune disease, and if you didn’t know, many autoimmune diseases are comorbid.  Meaning that autoimmune diseases often tend to compound on each other… if you have one, it’s likely you have two, or three, or four autoimmune disorders.  (I didn’t tell him he had celiac disease, but I encouraged him to look into it!)

Except for me, I thought.  I “only” have celiac disease.  I was diagnosed, previously, with a laundry list of weird things, but none of them were autoimmune.  HOWEVER, when I was researching for a comment to the above linked-to post, I saw that interstitial cystitis, which was one of the the things I was diagnosed with, is now considered by many doctors to be an autoimmune disorder!  No direct causal link has been found — doctors still don’t know how the body attacks the bladder — but evidence strongly suggests that IC is autoimmune.

Ever since I went on a gluten-free diet for celiac disease, my symptoms for IC disappeared, so I don’t know if it could be said that I “have” IC any more.

But, still, I thought that was interesting.

In semi-related news, my Mother has an autoimmune disorder similar to MS called chronic inflammatory demyelinating polyneuropathy (CIDP), my aunt has MS, my uncle has an autoimmune kidney disease…  That is, three out of four sibs in my mom’s family have serious autoimmune issues.  But, neither of her parents do/did.  Also three of her first cousins have MS.  She told me that her family was approached by Mayo Clinic, because someone there wanted to do a study on their family, because of the high incidence rate of multiple sclerosis.  But, then the funding ran out (or something) and the study was never done.  (My Mom also has Marfan Syndrome, and we were told eleven years ago that she had “six months to two years” to live… so we’re a family that defies the odds, in both good ways and bad!!)

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About Karen Joy

I'm a partially-homeschooling mother of six -- 3 boys ages 19, 17 and 15 years old, and three girls: 11, 8, and 3. I like birding, reading, writing, organic gardening, singing, playing guitar, hiking, the outdoors, and books. I very casually lead a very large group of homeschooling families in the Phoenix area. I have a dear hubby who designs homes for a local home builder and who is the worship pastor of our church. I live in the desert, which I used to hate, but now appreciate.

Posted on June 16, 2009, in Celiac Disease, Family, Medical Stuff. Bookmark the permalink. 9 Comments.

  1. So interesting, Karen! My grandmother has IC. I wonder if she should try going off gluten. Not likely to happen, but I could at least suggest it to her.

    Your family definitely has a lot with which to contend! Do you pray divine health over your children? I don’t believe because something is genetic that it has to continue. May your family walk in supernatural health and keep defying all the odds!!!

    • Wow, Daja! Is your grandmother already on a low-acid diet due to IC? I’ve found that people who have already tried a very restrictive, specific diet are more willing to try a different restrictive diet.

      And, yes, we definitely pray for healing and health. Definitely. Daily. I was raised in a Pentecostal church that taught that, pretty much, if you needed healing for something and didn’t receive it, it was your own fault, from not having enough faith, and that God would heal anything, every time, if you just have enough faith. I’m not there. However, I do definitely believe that God supernaturally heals for TODAY, and we pray towards that end.

  2. I know of a lady with a long list of foods she avoids that exacerbate her IC. I’ll fwd the link to her. Thanks for sharing that!

    For grins and giggles, I just looked up endometriosis was at one time also thought to be autoimmune related. I don’t know what the current thought on that is, but looking at a list of comorbid disorders ( http://www.endo-online.org/inthenews.html ), I can see that some of them could also be related to gluten sensitivity.

    Speaking of gluten sensitivity, do we know whether or not all non-allergy gluten sensitivity is autoimmune, or is it only CD that is?

    • I read (mostly) an interesting but very technical article on gluten sensitivity on Wikipedia: http://en.wikipedia.org/wiki/Gluten_sensitivity Technically, wheat allergy is autoimmune, too, because the body identifies something that shouldn’t be troublesome as a threat (same with all allergies). But, there are definitely autoimmune markers in the blood for ideopathic gluten sensitivity (GS not caused by celiac disease). It did mention that IGS is “controversial.” I for one (not that I’m a doctor, but I’ve read/heard other health professionals express similarly), believe that IGS is a form of celiac disease, even if an intestinal biopsy doesn’t show damage to the villi.

      About 60% of the way down the page is a chart comparing celiac disease, wheat allergy, and IGS. I thought it interesting that the main symptoms if IGS are ataxia and peripheral neuropathies, which is pretty common in “real” celiac disease, too.

      Just curious: Do you have other family members with autoimmune disorders? Because then, I don’t think yours could really be called ideopathic. It seems that though most autoimmune disorders aren’t technically inherited (though some are), autoimmune disorders can be grouped in families — with the parent having one kind of autoimmune problem, and the child a different one altogether.

  3. embracingthechaos

    So it’s not just us then… We have “diagnosed” so many people with CD. We rarely ever actually say anything since it isn’t something anyone wants to hear. But we’ve been right at least twice!

  4. It is really interesting how many autoimmune diseases/disorders/issues link to some kind of dietary intolerance. I have endometriosis, which some doctors believe is autoimmune related, and I cannot tolerate gluten or dairy. I would love to be tested for celiac, but I’ve heard you have to go back to a gluten-inclusive diet before testing for it to be accurate…. don’t wanna!

  5. I have a gluten intolerance (tested negative for celiac disease, but gluten makes me incredibly ill), psoriasis (autoimmune), severe allergies (autoimmune), and idiopathic anaphylaxis (ditto).

    My mother has severe rheumatoid arthritis; her grandfather had the same arthritis throughout his entire body. I remember as a child seeing him sitting in his wheelchair, sobbing because he was in so much pain. 😦 My mother’s mother died of colon cancer, which they are now saying may be linked to celiac disease.

    • What tests did they run for CD, Karen? And ideopathic anaphylaxis????!!!!???? How scary! Have you ever had to EpiPen yourself? The whole “ideopathic” thing drives me nuts. I’m sure there’s a trigger, but no one can find it.

      Is your mother on a gluten-free diet? I know a lady who has RA (and who has twin daughters with CD) who eats gluten-free because it helps her RA. http://www.naturalnews.com/022919_vegan_arthritis_rheumatoid_arthritis.html

      • My doctor would only do the EMA test for celiac–and it came up negative. Since then I’ve done some reading and apparently about 20% of celiacs have negative EMA. All I know is when I took myself off gluten, I was waking up at a normal hour in the morning, not sleeping in till 10; my digestive system normalized, and my lifelong clumsiness–seriously, I used to have bruises up and down my legs from just bumping into things–went away. My husband even commented on that.

        My mom is not on a gluten free diet. We are estranged, and a long time ago I suggested that dairy might be exacerbating her RA, and she dismissed it with “But I love my dairy!”

        My anaphylaxis happened when I was at a friend’s house; I had just eaten a fast food dinner. Luckily my friend had some experience with anaphylaxis and got me to the ER for treatment. Later I went to an allergist and they diagnosed me with serious allergies to mold, dust, cats and dogs. But since then I’ve read that environmental allergies do not cause anaphylaxis, as the allergist claimed. I did test “mild” for green beans, bananas and apples…since going off gluten I’ve noticed my reactions to those foods has increased in a bad way. Interesting, no?

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