New findings in key to unlocking autoimmune disorders

[Caryn]

Interesting study from Scientific American about Celiac Disease out in August:

Study of a potentially fatal food-triggered disease has uncovered a process that may contribute to many autoimmune disorders

 

"What is more, CD provides an illuminating example of the way such a triad—an environmental trigger, susceptibility genes and a gut abnormality—may play a role in many autoimmune disorders. Research into CD has thus suggested new types of treatment not only for the disease itself but also for various other autoimmune conditions, such as type 1 diabetes, multiple sclerosis and rheumatoid arthritis."

 

80% of our immunity is housed in the gut, for those with kids that struggle with immune-related T.S. issues this study solidifies the notion that the gut is the first place to investigate and perhaps the key place to focus for gradual healing.....

 

http://www.scientificamerican.com/article....isease-insights

 

We truly are what we eat.... and get exposed to, and inherit.......

[jees_mom]

genetically, my daughter (as well as me and my other dughter) are at a high risk of develping cd. she just started facial tics, and they're thinking it's pandas. i was going to go gf/cf with her, but was worried that then we wouldn't know if it was the gluten OR the antibiotics (which she's starting wednesday), which made her better. but after reading what you wrote, i'm thinking it may benefit her to go gf/cf anyway,. what do you think? thanks!

[Caryn]

I think would ask for a celiac screen. According to doctors at Columbia University Hospital, elevated tdg6 levels are associated with neurological manifestations.

 

I thought my son was pandas too in the beginning. He had negative titers and I was pressured to believe it still could be pandas by some folks.

 

We did a whole host of tests on nutrient levels etc.... and discovered, eventually, that he had undiagnosed celiac.

 

He is completely fine and after being gluten free, corn free, and artificial ingredient free for 2 1/2 years he has not had another relapse. (The problem in our son's case involves a sluggish liver and so we have to keep the fungal feeding foods down and watch the toxins in the diet. He was really bad at dx and everyone that knows him will say that he is a completely different kid now, so I am really convinced that there is a connection.

 

our story is here:

 

http://healthy-family.org/caryn/289

 

If there is a gut problem (80% of the immune system is housed in the gut) then the antibiotics will quite possibly cause dysbiosis to develop or worsen, thus making rebounding infections more likely. You really need to do tests to rule out Celiac/gluten intolerance/ candida overgrowth, fungal issues in the gut at the very least, if CD is in the family. They claim that 99% of celiacs in the U.S. are currently undiagnosed. One in 100 have the disease and in some cases the number is 3%! We all eat the GF diet here. My husband and other two boys will eat gluten on rare occasions but my son and I strictly adhere to a GF diet.

[jees_mom]

We've already been tested for celiacs. We were tested for genetics AND IgG and IgA against gluten. That's how i know she's genetically at high risk (there are no known celiacs in either of our families). Everything came back negative. but i know that that is not full-proof. i'm jsut scared that if she does have pandas, and we donot get her on the antibiotics soon, there'll be even more brain damage. in my heart i really believe that her facial tics and separation anxiety are related to when she got sick back in may. she got sick, then within a week developed a tummy ache and separation anxiety. then several weeks later, she developed facial tics (eyes blinking and winking her right eye.) it's just all too coincidental. they tested her for strep (titers) and everything came back negative. but i now know that the titers can come back negative, and she may have it. (there was no strep taken at the original onset of the sickness.)

 

i've also heard though that sicknesses can activate the celiac's gene. now i'm faced with this decision. to put her on antibiotics or not? we're going gf/cf starting tomorrow. and i'm suppose to call the doctor tuesday, to see what we're doing re: antibiotics.

 

(btw, our whole family got tested for celiac's. my 2 daughters and i are a level 4- high risk. my dh is a level 2 or 3- moderate risk. and my son is a level 1- extremely low risk- although that means nothing as i know a little boy who's extremely low risk, and he cannot tolerate gluten.)

[jees_mom]

According to doctors at Columbia University Hospital, elevated tdg6 levels are associated with neurological manifestations.

 

what is this "tdg6"? i've never heard of that. we weren't tested for that.

 

i'm going to read your son's story now, in hopes it'll help. thanks!

[MichaelTampa]

Caryn,

 

Where would you suggest getting a celiac disease screening? Is this something to get from an MD, or someone else? Is there a specific form of the test you would recommend asking for?

 

Michael

[MichaelTampa]

Another question I have is, what would a corn free diet have to do with celiac disease? I thought corn was gluten free. Back when I was trying to do gluten free for a while, I would use corn flour. I am battling candida, and believe I have determined that eating corn flour sets me back (is good for the candida, not for me), and that goes with the theory of mold that I remember being discussed a couple months ago. Is there more to it though, and how would it relate to celiac?

[chap]

hi caryn

 

ive just read your story, can you tell me what exactly a 'white blood cell food intolerance test' is?

It is my daughter who has TS, but earlier this year my younger son was tested for celiacs due to failure to put on weight. It came back negitive, but I suspect a gluten INTOLERANCE test was never done.

My dd has often complained of a sore tummy, but this has decreased quite signigicantly since we cut out dairy.

Did you organise your tests through Dr rodney Ford?

thanks

[jees_mom]

michael~ you need to be careful where you get tested for celiacs. not all testing places are the same. i went through prometheus labs. here's the requisition form: http://www.prometheuslabs.com/Resources/Ph...Requisition.pdf

 

they are one of the best labs for celiacs. i would get the "celiac plus" test, which is the genetic AND serology test (the serology test checks for IgA and IgG antibodies). My insurance did NOT cover the test, which is about $800. so i decided that i would call around to the local labs, and see if they offered some of the same tests. i ended up finding out that the hospital that i go to, sends out to the prometheus labs! so, the hospital drew my family's blood, sent it to prometheus labs, the lab sent the hospital the results, and the hospital billed my insurance! cool. so if it's not covered by your insurance, call to local hospitals that DO take your insurance, adn ask if they send out to prometheus. (i hope i make sense!)

 

good luck!

 

btw, 2 of my children came back positive for IgG (sensitivity to wheat). the GI specialist said that that sometimes happens, and what matters more is the IgA results; which my whole family came back negative on. you CAN have negative results (and a low genetic chance of celiacs) and still have gluten sensitivy. (my friend has very gluten-sensitive children, and all results came back negative. even the "gold-standard- the small intestine biopsy- isnt' full-proof.) remember, celiac's is the END result... but you may have YEARS of gluten sensitivity, and damage being done, before you develop full-blown celiacs.

 

chap~ what is a "gluten intolerence test"?

[chap]

chap~ what is a "gluten intolerence test"?

hey jees mom

 

im a bit confused about all the gluten tests! I think what I meant was that I suspect he was tested for TTG (negative) but that an IgG was never done.

 

Interesting that your GP said the IgA was the important one, as I thought that was the one that would not pick up gluten sensitivity UNLESS cealiacs was present?

 

How are you going with the g/f diet anyway?

good luck

chap

[Caryn]

can you tell me what exactly a 'white blood cell food intolerance test' is?

It is my daughter who has TS, but earlier this year my younger son was tested for celiacs due to failure to put on weight. It came back negitive, but I suspect a gluten INTOLERANCE test was never done.

My dd has often complained of a sore tummy, but this has decreased quite signigicantly since we cut out dairy.

Did you organise your tests through Dr rodney Ford?

thanks

Chap,

The white blood cell test is the IgG. I'm in the states so I did not get testing w/ dr. Ford, but he did recommend Enterolabs in Texas and we use them for our ongoing lab work. He and I had several email contacts a couple of years ago when my son was very sick and reactive. He helped point me in the right direction. Dr. Ford believes Celiac is a regressive disease that is inherited from birth, so he very much is in line with your thinking-- He advocates a gf diet when there is gluten intolerance and not *yet* celiac.

Here is an article by him at celiac.com:

 

http://www.celiac.com/articles/1085/1/Glut...RACP/Page1.html

 

Dairy intolerance and gluten intolerance often go hand-in-hand. Many new to the gf diet find that they have to also eliminate dairy, sometimes soy, and often corn until their gut heals.

 

Here is info on his clinic:

http://www.drrodneyford.com/index.php/2008...ppointment.html

[MichaelTampa]

FYI, I had my first appointment with a gastroenterologist yesterday, looking for an endoscopy and colonoscopy, which did get scheduled for a couple weeks from now. I mentioned celiac as one other possibility for things going on, and she suggested "this new test that looks at genetic and also other factors", and it turned out to be the prometheus test that jee'smom was recommending. So, that is the testing we will do in a couple weeks.