Autoimmunity After Going Gluten Free

dana.naomi · September 1, 2008

Hey all,

I was diagnosed as celiac when I was 20 - and by that time I'd already developed a score of neurological issues. I have been gluten free ever since, but since I probably developed celiac at age 4, the assumption was the damage had already been done as far as making my body a host for other autoimmune problem.

And how right they were. Since Summer 06 (the time of my dx), I've developed 5 other autoimmune problems including mixed connective tissue disease with central nervous system involvement. My neurologist, the doctor who ran the orginal blood work and ordered the endoscopy that dxed me with celiac, believe that I have something he calls "full body celiac". He says its a condition few people have and few doctors no about - but that's all I've ever gotten out of him. I should note that he's nationally - well actually internationally - known, so I trust his opinions quite a bit. That said, regarding the "full body celiac", well I can't help but think he might've made it up! :blink:

Here's my question: how can celiac continue to reek havoc on my body when I'm entirely gluten free? I'm more than careful...and besides, all of my horrible stomach symptoms have gone away. If I was having gluten, I'd know it. My other doctors, the rhuem, the endo, etc, having given me dxes that fit their fields and don't pay mind to this weirdo "full body celiac" term. But I'm curious what you all think...so ... thoughts?

ShayFL · September 1, 2008

If you Google there is information that is spotty on a term called "systemic celiac". It just means that more organs/tissues/areas of the body are affected. With the typical being gastrointestinal.

That is all I could find.

trents · September 2, 2008

The issue may not be that you are experiencing a continuation or extension of your your Celiac disease. It's just that autoimmune diseases tend to cluster. If you have one you are more likely to have others, statistically speaking, though each one may not be directly related to the others. It seems that some people are prone to develop autoimmune diseases. Perhaps there are gene clusters that are responsible for this.

ravenwoodglass · September 2, 2008

Also as someone who this doctor would define as a 'full body' celiac I did have to be extremely strict with the diet. My first symptoms were neuro and they hit at about age 4 also.

Did your doctors tell you to avoid personal products and toiletries with gluten ingredients? Are you avoiding gluten grain alcohols and vinegars? Are you doing everything possible to avoid CC? Being as strict as I was in the beginning was really hard but it did clear out things and I was fortunate to see all my autoimmune issues go into remission. You may be getting just enough gluten still to keep those antibodies active and on the attack.

spunky · September 2, 2008

According to the veternarian who has made a lifelong study of celiac in both pets and people, gut issues are the first to resolve after getting off gluten... neurological, muscular, skin, etc. issues take years to resolve.

His feeling, from doctoring animals with similar issues, is that dairy proteins, soy protein and sometimes also corn protein to a lesser extent, may also exacerbate these autoimmune symptoms and prevent them from thoroughly healing.

Some of his ideas may be helpful to you... it's possible you just haven't been gluten free for a long enough time for everything more complicated to begin healing. You might find some of Dr. Syme's thoughts interesting:

www.dogtorj.com/

Gemini · September 2, 2008

Hey all,

I was diagnosed as celiac when I was 20 - and by that time I'd already developed a score of neurological issues. I have been gluten free ever since, but since I probably developed celiac at age 4, the assumption was the damage had already been done as far as making my body a host for other autoimmune problem.

And how right they were. Since Summer 06 (the time of my dx), I've developed 5 other autoimmune problems including mixed connective tissue disease with central nervous system involvement. My neurologist, the doctor who ran the orginal blood work and ordered the endoscopy that dxed me with celiac, believe that I have something he calls "full body celiac". He says its a condition few people have and few doctors no about - but that's all I've ever gotten out of him. I should note that he's nationally - well actually internationally - known, so I trust his opinions quite a bit. That said, regarding the "full body celiac", well I can't help but think he might've made it up!

Here's my question: how can celiac continue to reek havoc on my body when I'm entirely gluten free? I'm more than careful...and besides, all of my horrible stomach symptoms have gone away. If I was having gluten, I'd know it. My other doctors, the rhuem, the endo, etc, having given me dxes that fit their fields and don't pay mind to this weirdo "full body celiac" term. But I'm curious what you all think...so ... thoughts?

As someone else who has 3 other autoimmune problems besides Celiac, this is very common and has little to do with the doctor's idea of being a "full body Celiac". Maybe that's his/her way of describing those who acquire other autoimmune diseases related to Celiac but it's usually because of a long diagnosis time and the resultant internal damage. Sometimes a body does not always bounce back, even when you are gluten free. Sometimes it takes a longer period of time for things to calm down. You just never really know because of the fact it's autoimmune in nature......stress could be the culprit in why some do not respond as well as others.

I have improved my status regarding autoimmune reactions very well, considering how long I went before a diagnosis was made. (20 years) I am super strict about the diet but do not use all gluten-free body/make-up products. Some feel uncomfortable with this and will go completely gluten-free but if you educate yourself with solid, medical fact, you will find it is not necessary unless you feel you will ingest some into your mouth. I can hear the arguments now but any good doctor will back this information up and as I base my decisions on medical fact and repeat blood work, I know this is true and do not worry about it.

Give yourself some time, try to keep stress levels at bay and make sure you do not ingest any gluten. You may see some improvement yet! It took me about 3 years to feel much better and for my autoimmune responses to really calm down. I even recently decreased my thyroid meds so keep the faith!

elonwy · September 2, 2008

In my extensive reading about the disease I have repeatedly come across references to "non-responsive Celiac disease" which is basically where people do not get better on the diet, usually due to the damage being so bad that its not reversible. Is that what he's referring to?