<<Disclaimer: Verify this information before applying it to your situation.>>
Ok.....I hope I am doing this summary right, it's my first try........
I also want to say, you guys have been wonderful.
Here goes nothing:
Gluten Intolerance is the generic name for celiac. It means the same thing.
There is an old saying, "A rose by any other name smells just as sweet.
Gluten intolerance IS Celiac. Perhaps they are trying to distinguish
between full blown celiac with serious damage vs dormant celiac disease not
yet with serious damage to the bowel.
Gluten intolerance IS Celiac disease. That person doesn't know much about
Celiac. Allergies are a whole other subject, but mostly avoidance is the
answer.
Most importantly, it sounds to me like you need the endoscopy (small
intestine biopsy) to determine if you have intestinal damage. As you will
read, the biopsy is still what they call the "gold standard" for diagnosing
celiac disease. Even if you had a gluten intolerance, it would seem to me
that you shouldn't ingest any gluten (even if you are not a diagnosed
celiac).
Unless you have the gene blood test for celiac, you won't know if you carry
the RECOGNIZED genes for celiac. If you haven't been eating much gluten, the
IGA for gliadin could be as you described.
Intolerance is often considered to mean that it bothers you to eat
gluten. Tru Celiac is often considered to mean you have developed the
damaged intestines. If you are gluten intolerant only, don't eat it, so
you will not get the intestinal damage later.
. Apparently the anti-gliadin IgA
is often positive for healthy adults and people who have other GI problems
(inflammatory bowel diseases, irritable bowel syndrome), i.e., it's the
least specific of the blood tests done for celiac disease
Well, with your symptoms, and your bloodwork, I would almost for sure say
that you have CD. (Osteoporosis is very common in CD, as well as anemia.
Sometimes the only symptom people have is anemia) It is very unusual for a
person as young as you to have osteoporosis. The probable reason that your
bloodwork was low was your diet. If you are not ingesting gluten, your
bloodwork, and biopsy will be normal!
Go to www.celiac.com and read a lot of good, factual information about celiac
disease. People who have CD have an intolerance to the gluten (protien) in
wheat, barley, and rye.
Celiac Disease Foundation (CDF) www.celiac.org
Celiac Sprue Association (CSA/USA) www.csaceliacs.org
Gluten Intolerance Group (GIG) www.gluten.net
It does not matter if you have a large amount of gluten or a crumb. It
sounds like celiac disease which is gluten intolerance!
Hi Michelle, In my opinion, nobody really knows what the heck is going on
with this whole gluten intolerance/celiac distinction. You would be well
advised to simply eliminate gluten from your life!
I think everyone's afraid of the endoscopy thing, but it was no big deal,
they
knock you out first. But I understand. If you do try the diet first, be
sure
to give it at least about 6 months because it can take some time to heal.
I have never heard that I could eat gluten again. As a matter of fact I was
told never to eat gluten. Maybe your doctor just does not know. It's very
confusing to get mixed messages like that.
If you liken it to a heart condition, then celiac disease is the heart attack
while a gluten intolerance is like having heart trouble.
In your position, I'd take control of my situation and, if you're not doing
it already, I'd live a gluten-free life from now on. It's healthy and safe.
I would suggest you to ask your questions at this other excellent GF forum:
http://forums.delphiforums.com/celiac/messages
Hey. To my knowledge gluten intolerance IS celiac. Never knew or read up on
anything different. Celiac is very complex
Think of it this way:
When you have a drinking problem, it's a drinking problem and then it grow
into alcoholism. Takes time but it progresses.
Here it the definition as I know it:
1. Gluten intolerance is where your body reacts to gluten.
2. Celiac is when you have the above, AND it has caused a certain
level of damage to your gut.
You cannot get an accurate test if you have not been eating enough gluten.
Celiacs can have Pos. blood tests without GI damage 'consistent with celiac,'
Neg. test with GI damage, or Pos. tests AND GI damage...Real proof is that
symptoms resolve when gluten is removed.
Start by checking out the article by Dr. Nelsen at
http://www.aafp.org/afp/20021215/2259.html Table 5 shows the procedure for
diagnosing celiac. If symptoms are present, endoscopy of upper GI should be
done if symptoms are consistent with celiac disease
Michelle: I understand your wanting to get a definitive diagnosis, but most
of us don't get one. Just remember that there are several prominent doctors
in the country who firmly believe that a great number of people are allergic
to wheat and should not be eating it, like up to 1/3 of the population.
That's a lot of people. Most of whom will not get a diagnosis.
The best way to get a test for an allergy to wheat is to go to
www.finerhealth.com and get tested at the gut level.
Hello,
I tested positive only on one test (anti-gliadin IgG) and negative on
biopsy. My doctor told me that I should try to eat wheat, but I don't,
since these tests were taken when I was on a gluten-free diet.
You sound like me but I regret never having gotten a biopsy when I was really
sick. Besides the low white blood count I also have swollen lymph nodes. I
definitely have Hasimoto's but that was the only positive antibody blood
test. So I'm being diagnosed as having autoimmune disorders including
possible celiac with a disconnected tissue disorder (possible Lupus). What
gets me is now my daughter is having issues but they are calling it a wheat
allergy not celiac
Please go to a gastroenterologist, MD and one that knows about celiac
disease.
If there is a support group near by, they can help you. Otherwise post your
request on the internet.
Gluten Intolerance and Celiac Disease are one and the same disease. Whoever
told you they are different, doesn't know what they are talking about.
I am also gluten intolerant and my daughter and husband have celiac disease.
The way it was explained to me by Dr. Fine (www.enterolab.com) is that if I
continued to eat gluten I would develop celiac disease. The
I understand all too well. My docs drifted between intollerant and Celiac a
few time before declaring me a full blown Celiac.
I can remember *exactly* how you feel. Last August I sat in my GI docs
office while she cheerfully told me I didn't have celiac. And, I just
started crying. If I didn't have celiac (which finally had explained
everything wrong with me for 20+ years!!) what the heck was wrong with
me!?!?
Keep pursuing trying to get this diagnosed, whether it turns out to be
celiac or not. I still don't feel normal, but I feel much better than I
did 6 months ago. I feel emotionally better because I know what is
'wrong' with me and I have a plan to fix it. And, I can see where my
health is improving, very slowly, on the GF diet.
When you have celiac disease and ingest gluten the process that happens is
this:
1. the immune system is triggered to produce anti-bodies.
2. these anti-bodies destroy the lining of your small intestine
3. the lining of your intestine is where you absorb nutrients like calcium
and iron
4. resulting in a malabsorption.
Sounds to me like you have plenty of intestinal damage. The only way that
they can tell for sure is to do a biopsy. If you haven't been ingesting very
much gluten then that could be the reason why your positive test values
weren't very high
My understanding is that intollerance means avoid gluten, but minor mistakes
hopefully won't hurt as much, and contamination isn't as much of an issue.
Tru Celiac is often considered to mean you have developed the
damaged intestines. If you are gluten intolerant only, don't eat it, so
you will not get the intestinal damage later.
I hope I did ok. I was overwhelmed by all the response, just from yesterday.
I can't thank you all enough, I have been very frightened the past few years.
Love,
Michelle
*Support summarization of posts, reply to the SENDER not the CELIAC List*
|
