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From:
Mike Jones <[log in to unmask]>
Reply To:
Mike Jones <[log in to unmask]>
Date:
Mon, 5 Sep 2011 12:48:21 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

Posted for Jami Peters [log in to unmask]

Thanks for all the responses (15 a day!!!)  Most everyone either said wait 6
months, or they had never heard of a test.
Below is some of the responses with links.


Hi, all,

I'm new to the list, and this question is a mirror image of why. My
family doesn't seem to get the intestinal aspects of gluten
intolerance, and the blood test isn't reliable for at least me
(although my mother was Dx as celiac over 20 years ago). Almost all
the non-gut symptoms of gluten intolerance run in my family.
Including, but not limited to:

GERD (esophageal reflux & heartburn)
swelling of the extremities
dermatitis herpetiformis
other skin conditions
idiopathic anemia
malabsorption
osteoporosis
vitamin B deficiency
angular chelitis
unexplained fatigue
arthritis
dizziness disorders (Orthostatic hypotension)
tingling in the extremities
hyperkeratosis
the "chemobrain" type of mental confusion associated with gluten ingestion
mouth burning
swelling in the mouth and oral cavity associated with gluten ingestion
and more!

Sources:
<http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/>
<http://emedicine.medscape.com/article/171805-clinical#a0217>
<http://emedicine.medscape.com/article/171805-clinical#a0216><http://emedici
ne.medscape.com/article/171805-clinical#a0216%3EI>
I
<http://emedicine.medscape.com/article/171805-clinical#a0216%3EI>
 started trying to go gluten free early this summer, following a
gluten trial and the bloodtest. The blood test showed nothing, but the
gluten trial resulted in a massive degeneration in the skin management
issues we've been working on for 10 years. Going gluten free combined
with vitamin & mineral supplementation in the deficient areas has
basically cured several longstanding health issues. Then when my doc
and I found my FIFTH dietary deficiency with no other explanation, he
said stay gluten free for a year, and then we'll do another test. At
this point, you couldn't pay me to eat gluten. Although, I'm still new
enough at this (about a month) to be really tempted sometimes.
 - Patricia A.

Symptoms - they could be anything  from gut problems to migraines to canker
sores - the list goes on - basically anything that could be a symptom before
CD was diagnosed can be a symptom after diagnosis if you have not gotten all
the gluten out of your diet and your gut has not fully repaired itself.

As for the blood test, I find that people usually wait 6 months to have
their first test after being diagnosed.  Three months is a bit soon as you
are still learning the GF diet and can still be making errors with it.  Six
months is usually when the gut starts to heal or show signs of healing and
thus the TTG test will be coming down, and hopefully gets below 20.  Below
20 means that your CD is not a health problem anymore.  Above that and you
still have work to do in finding hidden gluten in your diet.  Keep having
the blood tests done every 6 months until you get below 20 and then you can
switch to every year and then to every couple of years or when you feel like
it .  If you are in the US I appreciate the costs involved to have the blood
tests done!

As I was diagnosed almost 30 years ago I did not have the opportunity to
have blood tests before my  diagnosis (went right to the endoscopy) however
I have had 3 done since about 1998 and they have been at 5, 3 and 4 - all
show I am maintaining a GF diet as the antibodies are not in my system.

I get bad muscle pain and stiffness within 24 hrs and it can take 1-2 weeks
to get rid of it.  Now I am starting to get diarrhea which I never had
before giving up gluten.
I must be getting more sensitive or am finally getting all of it out of my
system.  Cheating is not worth the pain for me.
But there can be alot of hidden gluten.  Grilled chicken can be dusted with
flour; alot of grilled items have soysauce (you have to ask), I can't even
eat things made in a "plant that processes  x y z and wheat".  Like Amy's GF
Mac&Cheese, like Nature's Path cereals.  I used to not be able to eat
Pamela's cookies but I think they are in a dedicated facility now.  NEVER
eat Deland Millet bread.  Alot of people say it is contaminated, I got very
sick on it.
On the other hand I got rid of 30 yrs of irritable bowel

You are probably getting more and more paranoid because you are    getting
more and more sensitive to gluten. Traces that wouldn't have    bothered you
before may now start to cause mild symptoms.
    If you are doing your best to avoid gluten, what difference does a
test make? Your best is your best.
    Ron

It is recommended to have your levels rechecked after 6 months and every
year after going GF.
Check through the attachment and see if you have removed all the gluten from
your home.

I had DH for 4 years  in 1992 and was taking more and more dapsone as I was
diagnosed by this ignorant dermatologist
And I told him I was on a "whole Wheat diet" because of my diabetes. He said
that was a good idea.
But to answer your question I saw an article in Diabetes Forecast *Wheat is
Your Problem*by jean Guest I immediately went on a g/f
Diet and it took me 3 years to get all the IgA deposits out of my system and
quit breaking out completely.  Doctor Joseph Murray
Who works with Jean Guest, as one of the best celiac doctors in the country,
said that is normal so I quit worrying about
The slight break outs so now I am not sensitive to anything and often drink
Budweiser beer (long story If you are interested)

I think for most 3 months is still learning curve time. Feeling paranoid is
pretty normal I think at this point and maybe necessary.  That said your ttg
should be improved and might give you good feedbank. Good luck with
everything

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