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I Figured It Out!!


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#1 dogdreams

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Posted 03 April 2009 - 11:39 PM

I recently recieved my genotype results from Enterolab. And I think I finally have an answer to what's been ailing me. biggrin.gif

After much research, I find I have a Celiac haplotype (DRB1*07-DQB1*0202) and a Narcolepsy gene that also doubles as a Celiac gene (DQB1*0301). I also have a gene that's implicated in hypersomnolence (DRB1*04) although only in combination with other genes I don't have. It's like the cards were stacked against me from the start. Since my brother and niece have been diagnosed Celiac (from a biopsy), and I have Celiac symptoms, Narcolepsy, allergies, and the gluten and allergies both trigger my N/C, I have come to the conclusion that I have (most likely) Celiac disease with secondary autoimmune Narcolepsy and allergies.

http://en.wikipedia....Coeliac_disease
http://www.ncbi.nlm....Pubmed_RVDocSum
I researched much more than this, but these highlight my findings.

I have been trying to answer this question for 7 years and I think I've finally done it. I can't believe it! This totally fits everything I've experienced the last 10+ years and I feel so validated knowing I have a N gene. It might not be the one everyone talks about but gosh darn it I still have it. I feel peaceful all of the sudden. cool.gif

Now let's party!!



#2 dogdreams

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Posted 04 April 2009 - 12:08 AM

I figure, a secondary autoimmune dx of N might explain the 'atypical' C. What do you guys think? I mean, N is still N, but the contributing factors can explain a lot.

#3 sleepless sleeper

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Posted 04 April 2009 - 01:00 AM

who knows how it really all worx out. I'm sorry that you have to have this, but at least now you know whats going on for sure.

You're in my thoughts and i'm sending you many hugs.

#4 eww

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Posted 08 June 2009 - 01:01 AM

That's awesome dogdreams! Now that "they" are certain that N is an autoimmune disorder I would be really interested in finding out the trigger for more of us. I haven't had any bloodwork done for N, so I have no idea where I would fit in terms of genetics.

Interestingly, the week before I got my "official" diagnosis, my grandmother was dx'd with Guillain-Barre, a rare acute autoimmune disorder affecting the nervous system. We believe that is was a reaction to her getting the flu the month before. Not related, but I found it interesting nonetheless.

#5 Lais02

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Posted 10 June 2009 - 11:26 PM

It sure would be great to figure out our triggers. I'm lost for what mine could be. The only thing I can think of is now that I've stopped eating gluten I feel better. So I'm wondering if my eating gluten so much is what triggered my N.

#6 jenji

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Posted 11 June 2009 - 12:16 AM

Wait. What are we talking about? Triggers as in, triggers that exacerbate our N or triggers that we believe kicked off the illness overall?

If it's the former, I have a load of triggers that make my symptoms worse; too many to list that I avoid like the plague, but then again sometimes N does what it wants to do worse than ever, even when I think I'm doing everything I can to be well and proactive.

If it's the latter, I'm pretty sure that what triggered my predisposition to narcolepsy to speak up (I've tested positive for HLA-DR15, DQ6, DQA1*0102, and DQB1*0602) was a nasty case of mononucleosis in 1987 (3 months in bed, swollen spleen, the whole deal), which was further exacerbated in 1992 by a traumatic event followed by a serious case of tonsillitis in 1993. From then on--1993--I was never the same again and my life profoundly changed.

After mono I could at least somewhat function a bit better, but then again I was much, much younger then and perhaps I was just able to weather it a bit better, in any case I was basically in a perpetual state of exhaustion, but in 1993 I developed definitive cataplexy and EDS in addition to the perpetual exhaustion, while my sleep issues (which I've had since a kid HH/SP) got much, much worse in that I developed the incessant waking and disrupted sleep in addition to SP/HH.

I've read a lot about Epstein-Barr virus being the trigger for a great deal of autoimmune disorders, so I'm pretty sure that's what triggered my issues, as I have two other autoimmune disorders that didn't become symptomatic/evident until after my battle with mono. Also, it's interesting, b/c during my most aggressive flares my blood results continue to show an elevated level of Epstein-Barr (which are lower when I'm feeling better) and so once my other autoimmune conditions flare, my N gets much worse as well. Now whether these EBV flares are related to the narcolepsy or to one or both of my other two conditions is hard to say, while I'm also not sure which of the three came first, the chicken, the egg or the N.

The '90's were not my friend in any way and so I'm very thankful for the progress I've made over the past 5-6 years through lifestyle, nutrition, attitude, medicine and overall proactive measures; of course, it certainly helped once I was finally dx'd with N last year in that it finally cleared up the mystery of C and EDS and allowed a competent doctor to add the correct meds to my medicinal regimen, as the correct stimulants were not one of those meds prior to my N dx. On a scale of 1-10, (10 being the average joe with no health worries or even how good I used to feel healthwise as a kid and 1 being completely disabled), in 1993 I was operating at a 1 (wheelchair bound in fact b/c of undiagnosed C and my other autoimmune conditions that attacked my joints, kidneys and so on) and continued at about a 1-2 for about 6 years; now I fluctuate between 5, 6 and 7, which is so much better than a 1. When I'm feeling particularly down I look back and remember how very ill I was for so many years and become thankful for where I am now. So very thankful. I'll take a 7 anyday.

It's still a definitive battle, but at least I finally know all of the conditions that I'm dealing with now, have fantastic doctors and everyone here on NN to support, encourage, listen, validate and allow me to express myself in so many ways.

Thanks all!

Anyway, triggers.

jenji

#7 Lais02

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Posted 12 June 2009 - 12:39 PM

I've never had mono, or ever been really sick. I can't pinpoint the time that my N hit me. So I don't know, but for me maybe gluten could have triggered it. KEEP IN MIND I HAVE NO REAL IDEA OF WHAT I'M TALKING ABOUT. I'm just throwing out an idea instead. My nickname as a kid was breadhead... because all I'd eat was bread.

#8 Kel29

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Posted 16 June 2009 - 11:42 AM

QUOTE (jenji @ Jun 11 2009, 05:16 AM) <{POST_SNAPBACK}>
Wait. What are we talking about? Triggers as in, triggers that exacerbate our N or triggers that we believe kicked off the illness overall?

If it's the former, I have a load of triggers that make my symptoms worse; too many to list that I avoid like the plague, but then again sometimes N does what it wants to do worse than ever, even when I think I'm doing everything I can to be well and proactive.

If it's the latter, I'm pretty sure that what triggered my predisposition to narcolepsy to speak up (I've tested positive for HLA-DR15, DQ6, DQA1*0102, and DQB1*0602) was a nasty case of mononucleosis in 1987 (3 months in bed, swollen spleen, the whole deal), which was further exacerbated in 1992 by a traumatic event followed by a serious case of tonsillitis in 1993. From then on--1993--I was never the same again and my life profoundly changed.

After mono I could at least somewhat function a bit better, but then again I was much, much younger then and perhaps I was just able to weather it a bit better, in any case I was basically in a perpetual state of exhaustion, but in 1993 I developed definitive cataplexy and EDS in addition to the perpetual exhaustion, while my sleep issues (which I've had since a kid HH/SP) got much, much worse in that I developed the incessant waking and disrupted sleep in addition to SP/HH.

I've read a lot about Epstein-Barr virus being the trigger for a great deal of autoimmune disorders, so I'm pretty sure that's what triggered my issues, as I have two other autoimmune disorders that didn't become symptomatic/evident until after my battle with mono. Also, it's interesting, b/c during my most aggressive flares my blood results continue to show an elevated level of Epstein-Barr (which are lower when I'm feeling better) and so once my other autoimmune conditions flare, my N gets much worse as well. Now whether these EBV flares are related to the narcolepsy or to one or both of my other two conditions is hard to say, while I'm also not sure which of the three came first, the chicken, the egg or the N.

The '90's were not my friend in any way and so I'm very thankful for the progress I've made over the past 5-6 years through lifestyle, nutrition, attitude, medicine and overall proactive measures; of course, it certainly helped once I was finally dx'd with N last year in that it finally cleared up the mystery of C and EDS and allowed a competent doctor to add the correct meds to my medicinal regimen, as the correct stimulants were not one of those meds prior to my N dx. On a scale of 1-10, (10 being the average joe with no health worries or even how good I used to feel healthwise as a kid and 1 being completely disabled), in 1993 I was operating at a 1 (wheelchair bound in fact b/c of undiagnosed C and my other autoimmune conditions that attacked my joints, kidneys and so on) and continued at about a 1-2 for about 6 years; now I fluctuate between 5, 6 and 7, which is so much better than a 1. When I'm feeling particularly down I look back and remember how very ill I was for so many years and become thankful for where I am now. So very thankful. I'll take a 7 anyday.

It's still a definitive battle, but at least I finally know all of the conditions that I'm dealing with now, have fantastic doctors and everyone here on NN to support, encourage, listen, validate and allow me to express myself in so many ways.

Thanks all!

Anyway, triggers.

jenji

If I may ask what other autoimmune issues that you have dealt with or are dealing with? I myself for 8years are battling what they say is Ulcerative colitis and I now have major kidney issues and joint pain and axiety/depression issues. The more tired I am the more depressed - I have a child to tend to and days can be really hard! They are bouncing me around on meds because alot of them cause my axiety to skyrocket! If you have any insight on the med rollercoaster I would appreciate your response!
Thanks, Kel

#9 Maren Harrison

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Posted 27 August 2009 - 10:41 AM

I recently recieved my genotype results from Enterolab. And I think I finally have an answer to what's been ailing me. <img src="http://narcolepsynet...#>/biggrin.gif" style="vertical-align:middle" emoid=":D" border="0" alt="biggrin.gif" />

After much research, I find I have a Celiac haplotype (DRB1*07-DQB1*0202) and a Narcolepsy gene that also doubles as a Celiac gene (DQB1*0301). I also have a gene that's implicated in hypersomnolence (DRB1*04) although only in combination with other genes I don't have. It's like the cards were stacked against me from the start. Since my brother and niece have been diagnosed Celiac (from a biopsy), and I have Celiac symptoms, Narcolepsy, allergies, and the gluten and allergies both trigger my N/C, I have come to the conclusion that I have (most likely) <u>Celiac disease with secondary autoimmune Narcolepsy and allergies.</u>

<a href="http://en.wikipedia....oeliac_disease" target="_blank">http://en.wikipedia....iac_disease</a>
<a href="http://www.ncbi.nlm....ubmed_RVDocSum" target="_blank">http://www.ncbi.nlm....ed_RVDocSum</a>
I researched much more than this, but these highlight my findings.

I have been trying to answer this question for 7 years and I think I've finally done it. I can't believe it! This totally fits everything I've experienced the last 10+ years and I feel so validated knowing I have a N gene. It might not be the one everyone talks about but gosh darn it I still have it. I feel peaceful all of the sudden. <img src="style_emoticons/<#EMO_DIR#>/cool.gif" style="vertical-align:middle" emoid="B)" border="0" alt="cool.gif" />

Now let's party!!

I hate to burst your bubble... Celiac Disease is nothing to be exited about.
And yes, if you are having issues, many medical issues and you have had family members that have tested positive for it. See a Doctor.
This is a condition that does lots of damage you can't see from the outside.
The only treatment for it, don't eat gluten... a lot easier said than done.
You have any idea what all they put gluten in?

But CD can cause bone loss to cancer to vitamin deficiencies to teeth problems, you name it really.
Have someone (qualified) look at you
may the force be w/ ya!
maren

#10 Marcianna

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Posted 07 September 2009 - 02:45 AM

Dogdreams has been gluten free for like..jeez. eternity. lol. Which reminds me... I still owe you a cook book! I suck at mail. ugh. no more brilliant ideas from me!

Awesome you have been able to do all the research. I know you and your research team must have worked forever!

#11 malachi777

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Posted 13 September 2009 - 07:23 PM

Each and every one of us have had one trigger or another that has caused narcolepsy. I tested negative for any celiac problems and I know my diet is not the problem. My nephew was just diagnosed with narcolepsy a couple months ago and his was triggered by mononucleosis. Narcolepsy is an immune problem, not a diet problem. I am sure with some pwn, diet can help to a point. For example, carbohydrates make a healthy person very lethargic, so imagine what it does to a narcoleptic.