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Hi Celiacs,
Thank you to so many people who sent some wonderful information about 
pungent body odor. I learned a lot.
I will summarize with a number of pages:

I excrete a STRONG smell after contamination.  The only way I deal 
with it is frequently showering and avoiding all gluten.

Since your daughter is 31 my advice is to just make her aware of the 
odor and let her make her own choices.  I am sure you are not the 
only one who has noticed it.
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FYI:  I wasn't much of a protein eater prior to diagnosis at age 
44.10 either.  I am totally gf for 10 mos.  (Followup labs at 6 mos. 
indicate negative gluten in system).  My serum ferritin is very low 
(5), hemoglobin is low, but within range, vit D is up from 21 to 46, 
still B12 deficient.

I'm trying to eat more protein and lose weight (I'm 140 lbs 
overweight) now that I'm not so fatigued anymore.  I'm still short at 
5'2" (lost 1-1/2 in. and am osteopenic) and can still be short 
fused.  Either way, I never had much body odor.

Don't know if that helps, but there you go.
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There is a condition called "Trimethylaminuria" which may be caused 
by the inability to digest choline  or it may be caused by a gene 
(they aren't sure and in fact it may be two different things). I 
thought you might need this information. There is a support group. I 
was on this group just because I was interested in the food aspect of 
it and I wondered if Celiac might be a cause. Nobody however was 
interested in the theory. I think this odor is usually fishy.

The only tests I would consider when testing for gluten diseases 
including Celiac is at Enterolab. As far as I am concerned the rest 
are mostly useless. It is easy and maybe it would appeal to your 
daughter more than going to the doctor.
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Re: issues with the digestive system- A lot of people get increased 
and highly pungent body odor when they have an illness such as 
Irritable Bowel Syndrome or have Celiac disease. This occurs because 
the bacteria in the gut is not being processed and its coming through 
the skin and working with the bacteria already present on the skin 
causing a foul odor.
***************************************
Probiotics are useful.
***************************************
There is a checklist on The National Foundation for Celiac website
www.celiaccentral.org  that maybe you could get her to look at.  CNN
also just aired 3 segments on celiac which can be viewed on that
website.  Find a local support group and maybe she would attend a
meeting with you.  Maybe try seeing if her doctors office would ask her
to do testing (but hard to do with over 21 children) Best of luck.
******************************************
I gather you have talked to your daughter about the fact that she 
needs to be tested for Celiac (especially since it is genetic) - a 
simple TTG blood test would at least get her on the way or an 
endoscope (which is not very evasive these days).  But if she chooses 
not have herself tested I am not sure what you can do, except gently 
talk to her about the body odor (my nine year old - a strict gluten 
free Celiac has that problem too, but hers is due to "youth" - I am 
constantly telling her DEODORANT!)  Best of luck with her.
*******************************************
I have heard of people who have a fish like body odor called fish 
odor syndrome, or  trimethylaminuria.

People with the disorder can release trimethylamine through breath, 
sweat, and urine. A few have a strong odor all the time, but most 
others experience a less severe smell that fluctuates over time. 
Researchers speculate that the variability of symptoms indicates that 
a range of genetic mutations can cause the disease and that stress 
and diet play a role in triggering symptoms.

There is no cure for fish odor syndrome, but a special diet can 
alleviate the worst of the odor problems. This low-protein regime 
restricts the amino acid choline, a building block of protein 
naturally found in high concentrations in fish, eggs, beans, and 
organ meats. Some people also report that limiting lecithin, a common 
food additive that is also naturally found in eggs, soybeans, and 
corn, helps reduce odor.

Because the disease is practically unknown by any name, it may take 
years for a person with trimethylaminuria to find a doctor who can 
recognize the problem. In a survey given to 22 people who had been 
identified as having the syndrome, McConnell found that it typically 
took them 5 to 10 years to seek medical care after their symptoms 
appeared. The correct diagnosis then required, on average, another 10 years.

I hope this helps.
****************************************
We once had house guests who were the son and daughter-in-law of friends.
They told us about how they had had a wonderful lunch at a French
restaurant, including roasted garlic.  They didn't need to tell us - the B O
said it all.  I have no idea how to help your daughter's situation, but the
first step is to at least gently let her know of the problem.
****************************************
The celiacs in my family don't seem to have that symptom, but I wanted to
write b/c I saw something on Dateline or 20/20 or something about body odor
and it had to do with a reaction the body has (in some people) to something
in a certain type of food.  I don't remember the food, unfortunately, but it
was not wheat or gluten.  I just thought I'd pass it along.  Maybe you could
ask her doc about it.
******************************************
I found that when I was not gluten free I had seborrhea.  I had to wash my
hair constantly because of scalp odor.  I no longer have this condition,
because I no longer take chances with products.  If it does not say gluten
free I don't buy it, and I cook everything from scratch.  You may be right.
She may be cheating.  She will pay the price eventually, and it won't be
pleasant.  Good luck.
*******************************************
In our family, we've noticed that we have body odor only if we eat 
foods that we have reactions to, including grains, dairy and 
legumes.  Avoiding foods that contain these antigens, we don't need 
or use deodorants.

Continued.....................

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