<<Disclaimer: Verify this information before applying it to your situation.>>
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
*Support summarization of posts, reply to the SENDER not the CELIAC List*
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