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Thank you to everyone who  responded.  Wow!  Here is a summary as well as 
further  information discovered by examining websites suggested by  others. 
-Donna 
My original question included  these three requests: 
1.  If you know it, what genotype do you  have? 
2.  How quick is your reaction to gluten  ingestion, in minutes/hours/days? 
3.  What ataxia reaction(s) do you  have? 
4.  How severe would you consider your  ataxia reaction to be, on a scale of 
1-10? 
Several people asked me how I  knew my genotype.  I found out from  Dr. Fine 
at http://www.enterolab.com.  Specifically, if you look at the list of tests 
available at  https://www.enterolab.com/Tests/Orders/, I got test labeled 
"Gluten Sensitivity  Stool and Gene Panel Complete."  I  paid for it myself ($349). 
 A lot of  money, I know, but it sure answered a lot of  questions. 
-=*=- 
A couple of people corrected me,  noting that "ataxia" was a term that needed 
to be expanded.  Thanks for the education.  :) 
dysarthria = language  problems 
-=*=- 
Interestingly enough, on one  website I discovered that 70% of people with 
brain-related symptoms carry the  DQB1*0201 gene. 
Also, gait-related issues are  another thing.  I had NO CLUE that  this was 
gluten-related.  I have  such a distinct gait that an old friend recognized me 
once after 10 years  because he recognized the way I walk.  Ooof. 
Casein was listed as another  possible culprit for these symptoms by more 
than one person.  I am casein intolerant (stool test from  enterolab) but haven’t 
gone casein-free because I can detect no symptoms and  ingest milk almost 
daily.  I’ve  always been able to track my entire list of symptoms straight to 
gluten  ingestion.  My symptoms are very  distinct and I am normally 
symptom-free except for the gluten accidents.  I must wonder if the gait issue, which  is 
one of the only symptoms I have “all the time,” is  casein-related? 
There is a very good message  thread with information at: 
http://neuro-mancer.mgh.harvard.edu/ubb/Forum73/HTML/004998.html 
-=*=- 
Someone asked how I'd rate a  1-10 scale (this is me, not from any book; I 
just wanted to get an idea as to  self-estimated severity): 
10: Completely immobilized, in  bed/chair until it subsides.  Barely  able to 
communicate.  I’ve gone  there once or twice. 
9: Barely able to stand/walk.  Tremendous difficulty  communicating.  I see 
this about  once every 4 months or so, now that I’m GF. 
8. Able to stand/walk but bouncing off  walls, tables, etc.  Having  
difficulty forming words.  Bruise  city. :( 
7. Able to stand/walk but constantly  marking objects to hang onto if 
necessary.  Enough words come "slow" to be extremely  annoying. 
6. Able to stand/walk; occasional  dizziness.  Occasional words come  slow. 
5: Distracted but able to  function. 
Below 5, I’d consider the  reaction to be at much lower levels. 
I’m going to try to “pigeonhole”  some of the responses to my questions, 
even though they didn’t specifically  address all 4 questions.  Answers I  
received: 
(ME) 
1.  HLA-DQB1*0201,  0201 
2.  Takes 45 Minutes for me to react.  Adding to my response:  Reaction lasts 
for 4 days exactly almost  without exception.  My symptoms  completely go 
away if I’m carefully GF.  I’ve gone back after unexpected symptoms and found 
the gluten each  time. 
3.  Inability to form many words (20%); tax  the patience of whomever I am 
speaking to. 
Inability to communicate coherently  (like someone who has had far too much 
to drink). 
Inability to walk straight (held onto a  table until it subsided; 5-8 
minutes). 
Vertigo / Drunken feeling (like the  world is spinning around my head). 
Uncontrollably sleepy (gotta take a  nap/break NOW before I fall down). 
4.  Severity 9 
(PATTY) 
1.  (not  answered). 
2.  Lasts from 11 days to 3 months; seldom  has now that GF. 
3.  Reaction complicated; did not respond  specifically. 
4.  Commented that reaction is similar to  autistics (VERY interesting) and 
that by all ways of determining it, this can be  diagnosed as autism. 
(OPIE) 
2.  Takes a day to react. (didn’t answer  other questions) 
(BETH’S  SON) 
1.  DQ2 (didn’t say if 1 or 2 copies of the  gene). 
2.  Took 6 months for symptoms to clear up  (didn’t say how quickly he 
reacted, though son is a young  child). 
3.  Reactions:  Dizzy, appeared drunk, falling down,  swaying on feet. 
4.  Severity not commented on; implied from  reactions. 
(RITA) 
1.  HLA-DQB1 
2.  Did not comment on how quick reaction  was. 
3.  Similar reaction to mine; adding she  reacts to corn, sugar cane and 
rice.  Added tongue/lip paralysis to reaction list and heart palpitations with  
rice.  (Yikes!) 
4.  Did not comment on  severity. 
(RED) 
1.  DQ1 
2.  Did not comment on speed of  reaction. 
3.  Had severe vertigo/imbalance; almost in  a wheelchair.  Changed diet and  
improved immensely. 
4.  Severity implied by response  above. 
(DIANE) (wrote long e-mail;  summarizing was difficult) 
1.  Unknown;  biopsy-diagnosed. 
2.  3-5 minutes.  Lasts 3-5 days for some symptoms and  weeks for others. 
3.  My list plus:  hand tremors (right hand), brain fog,  concentration 
problems, inability to remember things; foot drop; exhaustion;  blurred/jerky 
vision and partial blindness; muscle spasms (can’t hold things),  clumsiness; 
headache, electrical/popping and pain in brain; weird skin  sensations, numbness, 
tingling; muscle/joint pain; anxiety; sore  throat 
4.  9. 
(RUTH) 
1.  DQ 2,2 (or 0201,  0201) 
2.  Speed/length of reaction  unknown. 
3.  My list plus basilar migraines.  Limited GI symptoms.  Other 
food/inhalant allergies.  Improved since GF.  Arm/leg paralysis, blindness, MS  symptoms. 
4.  Not given. 
(JANE) 
1.  Genotype not  known. 
2.  15-30  minutes. 
3.  My list (yes, your symptoms are  identical to mine from the way you 
described them) plus hypoadrenia (adrenal  fatigue).  Problems walking;  lean/fall 
to the right.  “Clumsies.” 
4.  Severity estimated to be about an  8. 
(JUDITH’S DAD)  I had to laugh at this one... “ornery”  used to describe 
gluten reaction.  I’ve been accused of ornery ...  :/ 
1.  Genotype not  known. 
2.  Speed/length  unknown. 
3.  Trouble walking; difficulty  communicating; falls down; ornery; purple 
spots on chest, arms, hands,  neck. 
4.  Severity not  estimated. 
(KATE) 
3.  Relayed similar symptoms and a personal  story.  Glad you’re finding that 
GF  living clears up the symptoms! ;) 
(SAUR) 
2.  Takes about a day to  react. 
3.  Symptoms  similar. 
OTHER  RESPONSES: 
MIREILLE suggested that I check  the forums at: 
http://forums.delphiforums.com/celiac/start 
NANCY commented that the sleepiness might have  something to do with thyroid 
levels and that synthroid helped immensely.  My comments: This would not  
surprising for me – my mom (who has a copy of the gene but refuses to admit she  
might be reacting since she has no gastrointestinal symptoms) had her thyroid  
out years ago due to hypothyroidism.  I don’t have the sleepiness problem 
unless I’m reacting, so I’m trying  not to go my mom’s route.   
Now that I am GF, I only have  the "sleepy" reaction when I ingest a certain 
type of gluten (cold cuts,  usually, for some odd reason).  Most  accidents 
only give me intestinal reaction.  Once in awhile, though, I'll hit that  one 
reaction and I'm toast.  I'm  becoming suspicious that there is a secondary 
reaction that is NOT related to  the common gluten gut response.  I must wonder if 
there is some  other type of chemical/enzyme involved because I can eat 
similar amounts of  other gluten-containng foods and be fine (except for the gut 
turning completely  to water). 
RED pointed me at this  link: 
http://neuro-mancer.mgh.harvard.edu/ubb/Forum262/HTML/000019.html 
PAJARITO pointed me to this link  regarding DQ1: 
http://brain.hastypastry.net/forums/showthread.php?t=2127 

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