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Hi all,
Just wanted to thank you to you all for your feedback on this one.
Attached in the summary of responses I rec'd to the following original post:
======================
1. I have an area on my shoulder blade where the skin feels like it is
burnt or tingling ... like nerve endings or something....When my symptoms are
more severe than usual, it hurts even more. Has anyone had any experience
with this.
2. If you consume gluten do you feel pain immediately or several hours
afterwards.
=====================
Personally, the problems celiac's has caused with my skin have been awful
for me all my life. (I'm 57, and was only diagnosed 2 years ago) My skin
in childhood was so painful our doctor (this was back in the late 40's-early
50's) made house calls to see me. Everything from Jergens' Lotion (alcohol
in that, very painful) to cod liver oil to vitamin D to steroids was tried,
to no avail. The skin on my hands, feet, and legs would frequently crack
open and bleed, and I had a few places that tingled and burned with nothing
showing (mainly on my back...I suspect because I couldn't reach it to rub or
scratch, and therefore it was more noticeable or something) Anyway, after 3
months gluten free my skin didn't hurt any more. (It'll never be soft and
silky, but it doesn't crack and bleed any more.)
=====================
In response to #1 I'm stunned to read this; I've had this for years, but
had made no connection w/ CD or gluten. I will definitely try to
correlate the two. My burning/ tingling starts right where I can reach
around under my arm, up, and touch... it starts just out of reach of my
fingers! Often it spreads to the whole scapula (shoulder blade). I
really thought it was just an old injury. Amazing what you learn from
this list, huh?
In response to #2 I feel nauseated, "pukey", and generally awful within
anywhere from 10 minutes to 6 hours, depending on the gluten source,
what else I've eaten, how active I am, etc.
I don't understand why some people feel no pain.... I had daily pain for
47 years! I also get other manifestations, like eye pressure, muscle
aches, headache, etc.
=====================
I asked a similar question about a month ago and about 15 people all
said they experienced this. None of us really have an answer to make
it go away except for eating gluten-free (my problem was that
something had gluten in it that I didn't know about). However, I can
give you my summary which has the suggestions made by the others for
making the pain go away. I can't vouch for any of them - I haven't
tried them yet!
A full summary was provided, but I haven't included it here because it was
already posted before.
=====================
I have been DX 11 years and I am still learning. This list is the best and
all the other websites also. Staying Gluten Free is the answer. I don't
feel any stomach pain until 36 hrs after I have ingested hidden gluten.
It's read, read labels and still there is always something new. Watch your
medications and check out everything. I did have bone pain in my arms
prior to DX. But since I have been on osteoporosis meds and calcium with
vitamin D I am fine. It is not easy to stay on the diet but my family is
very aware and they always ask me what I can eat. Like today we are going
over to our daughter's for a Memorial Day cookout and I will bring my own
barbeque sauce and I made the potato salad and it is gluten free. My son-
in-law will be grilling chicken and he will put my pieces on foil and then
mine will not come in contact with the rest and he can put my sause on mine
and use his sauce for the res! t. Nice Guy. also check to see if there is
a support group in your area. This is very helpful. Ask the dietician at
the hospital, they should know and if not they can find out for you. Hope
this helps.
========================
In response to #1 That's peripheral neuropathy, one of the symptoms of
celiac disease. Once you eat gluten free (GF), that may stop. If it
doesn't you may need to take inositol bound niacin pills. That stops it.
We do tend to have shortages of niacin, among other things, like folic acid.
In response to #2 We're all different. Yes, many of us do feel pain in
just that amount of time after we've eaten. If you are celiac the
reaction to gluten takes about three or four hours for most, a day or
two for some, and a few take up to two weeks. Then there are those very
few unlucky ones who don't react, and therefore never know if they're
eating gluten. But the damage goes on anyway. You may also have diarrhea
or constipation after gluten
========================
Just wanted to let you know that I never had any pain
from CD. Even when I was full blown & sick & weak
before I was diagnosed. My stomach will feel funny,
make alot of noise & I can sort of feel the food going
from my stomach(?) but no pain.
========================
Personally, the problems celiac's has caused with my skin have been awful
for me all my life. (I'm 57, and was only diagnosed 2 years ago) My skin
in childhood was so painful our doctor (this was back in the late 40's-early
50's) made house calls to see me. Everything from Jergens' Lotion (alcohol
in that, very painful) to cod liver oil to vitamin D to steroids was tried,
to no avail. The skin on my hands, feet, and legs would frequently crack
open and bleed, and I had a few places that tingled and burned with nothing
showing (mainly on my back...I suspect because I couldn't reach it to rub or
scratch, and therefore it was more noticeable or something) Anyway, after 3
months gluten free my skin didn't hurt any more. (It'll never be soft and
silky, but it doesn't crack and bleed any more.)
=====================
It seems that everyone reacts differently to gluten. I react the same way
you do, within 2 hours I get abdominal pain and the "runs". Some don't get
pains or ANY reaction at all. (Must be REALLY difficult to stay away from
gluten when you don't get any physical reactions to it, or even know WHEN
you've gotten gluten accidentally if you don't react to it!) Wish I could
explain why, but I can't. I'm just glad that I DO react so that I can tell
when I HAVE ingested gluten!
=========================
You could have arthritis. There is a type of arthritis than many celiacs
have.
When a celiac eats gluten, the small intestines react. In some way the
gluten damages the small intestines and flatten the villi. Because the
villi absorb the nutrients from the food and they are already damaged, the
body does not get the proper nutrition. Many diseases develop from this.
It pays to stay on a gluten free diet. You make yourself healthy again!!
========================
It seems to me (diagnosed almost 2 years ago and I had never heard of it
either) that I can recall times when areas of my skin felt that
way.....and now that you have mentioned it, I haven't had that
anymore.........interesting. Also, your reaction to gluten will be as
individual as you are. I have found that I react within about 12 hours.
In learning about this disease, I have found out that peoples reactions
go from immediate reaction that requires hospitilazation to no reaction
at all (though damage is still being done). After a while, you will get
to know your reaction and also be able to separate it from a "non-
damaging" food reaction (I found out I don't tolerate beans....). And
sometimes I hurt for a little while, very intensely, and I know I have
not consumed gluten because I prepared all the food I ate, or ate only
marked gf foods. I'm beginning to think that sometimes we get "tummy
aches" like normal people. Good luck on learning to eat again and
remember when people want to feel sorry for you, tell them "we don't
live to eat, we eat to live."
============================
Hi,
I would suggest you to go to this site:
http://forums.delphi.com/celiac/messages
and aks your questions.
Very caring and knowledgeable people there.
Good luck,
============================
When I used to have gluten problems, my stomach would start hurting an hour
or so after eating. I found out that I have gluten intolerance, not celiac
disease. When I was off of gluten for several months, I find that I can
eat small amounts now without a problem.
============================
I have had a similar experience with a burning patch that occasionally
comes on the back of my underarm. I don't think I've ever mentioned it
to a doctor, though. I have no idea what it is. Rubbing it a little
usually makes it go away quicker, as does stretching. Sorry I'm not too
helpful. I hope you figure it out. As for reacting to gluten, as far
as I can tell, people w/ celiac really vary in their reactions. There
is no "normal."
============================
I had a TON of stomach pain every day before my diagnosis too. It's
probably dairy, not gluten. Avoid dairy until your intestine has healed.
The amount of time that takes, varies from person to person. I thought
gluten was causing my pain, but the gluten just does the damage...it can
"cut" off (for lack of a better term) the ends of your villi which contains
lactase, the enzyme that aids in digesting dairy. So, if you don't have the
lactase in your intestine to digest the diary, it is very painful when your
body tries to digest it. This is what happened to me, anyway. I was
luckily only temporarily lactose intolerant. Once I went gluten free, I was
able to eat diary again in about a month. I don't know where you are in
terms of getting a diagnosis, but you have to be consuming gluten before
your endoscopy, to get an accurate diagnosis.
I also had that tingling/burning sensation on my head. I never found out
what it was, however. I do have dermatitis herpetiformis, so I just figured
it was related to that somehow. I haven't had it for quite a while now.
=============================
This actually sounds like shingles - an illness related to chicken pox. It
can take awhile for it to run its course.
As for symptoms intestinally, I didn't seem to have a problem until 5
yrs. ago - but was feeling not well - tired, general ill health, flare-
up of colitis, pneumonia, and other illnesses for 30 years prior... now
I get severe intestinal reactions within 1/2 hour of gluten ingestion.
I think different people react differently. My sister has severe mood
swings and inability to cope. Her 'guts' don't seem to bother her much,
so she doesn't stick to the diet... :-( My 2 daughters both react with
diarrhea, moodiness, irritability, tiredness... they don't want gluten.
============================
While you are waiting for your biopsy, you may benefit from the blood
type diet as outlined in the book, "Eat Right For Your Type" by Dr.
D'Adamo N. D. Even after I went gluten free, I continued to be very
sick. I didn't get really well until I starting following my blood type
diet
=============================
Even after going GF, I continued to be very sick after meals no matter
what I ate. And I continued to lose weight even faster than before. It
was very scarey. I asked to doctors what to do & neither could help me.
Through trail & painful error, I eventually found that pork, beef, dairy,
eggs were the cause. I gave them up one at a time & got much, much
better. Then I found the book, "Eat Right for Your Type" and read that
my blood type shouldn't eat those exact same foods. It was uncanny!
I've been following the basic type A diet & I'm so much better, I can
hardly believe the difference. I'm tolerating a greater variety of foods
now than I could before I gave up the big offenders. If you haven't
already, you may want to take a look at that book. You may be surprized
at what you learn & how much better you feel after you try your blood
type diet for a while. And, my weight loss has stopped. I think I've
even gain a pound or two. ~Valerie in TAcoma, WA (If you don't know
your blood type, you can order a simple blood typing kit from Dr.
D'Adamo's website for about $8. I don't have his web address, but you
can search it "under eat right for your type.")
============================
I appreciate all your comments and suggestions. Unfortunately right now I
can't go GF as I haven't yet had my biopsy, but I can't wait because I am
hurting so much right now.
I tried gluten free for 2 weeks and felt much better. I was just doing
this on my own without realizing there was such as disease as Celiac. I
just thought maybe I was allergic to wheat. It was at that time that I
started to research wheat allergy and came across Celiac Disease.... by
accident. When I started to read the information available, I said "that's
me". After 11+ years, I hope this nightmare is close to an end. I guess
you have to take things into your own hands sometimes. I went back to the
doctor and requested that the testing process be put into place. I know my
doctor probably thinks I'm nuts, she doesn't think it is possible that I
could have this, but I don't really care. I am the one who has been living
with the pain all these years and I want to rule this illness out ...
however, I do believe I am on to something here.
Thanks again everyone ... you have been most helpful.
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