What is glutened?

[Guest guest]

I don't have answers for all your questions. I think the symptoms are highly variable. Not surprising, when you consider that half the people with CD have no GI symptoms when they're diagnosed!

For me, I have up to 15 hours of extremely intense vomiting. It usually begins about two to six hours after accidental gluten ingestion. I feel weak for a couple of weeks afterward.

So far, it's been pretty clear what the source was. It never happens at home -- at least, not since the family members who sometimes share a house with me learned what's involved and eliminated the risk factors.

H.

So when people say I was glutened what does that mean? How do you know that it was a gluten reaction and not just spoiled food? How do you know you don't have an upset stomach? How long after eating the food you feel bad?

I have heard people say they feel bad 15 minutes after eating gluten and that is not a celiac reaction; it may take a long time (hours or days) to have a gluten reaction in your intestines and by then you may have eaten several things in several places.

Not questioning anybody's symptoms or reaction. Just curious about what the group thinks.

-----Original Message-----

From: rami_keisari <rami_keisari@...>

Sent: Sat, Feb 6, 2010 9:22 am

Subject: [ ] What is glutened?

So when people say I was glutened what does that mean? How do you know that it was a gluten reaction and not just spoiled food? How do you know you don't have an upset stomach? How long after eating the food you feel bad?

I have heard people say they feel bad 15 minutes after eating gluten and that is not a celiac reaction; it may take a long time (hours or days) to have a gluten reaction in your intestines and by then you may have eaten several things in several places.

Not questioning anybody's symptoms or reaction. Just curious about what the group thinks.

[Guest guest]

NOTE: reader discretion advised: unpleasant digestive symptoms described

in this post.

Often there is a recognizable set of symptoms that go along with

ingesting gluten. When it happens often enough you start to connect those

symptoms with gluten exposure. From our family’s experience

and what I have heard from others, the symptoms can vary from person to person

and even change depending on what type of gluten exposure has happened as well

as changing over time.

My celiac hubby had what was then considered to be “typical”

celiac symptoms (pretty much text book case) when he was diagnosed. Once

on a GF diet, however, he rarely has symptoms even when he has knowingly consumed

gluten (a few years into the diagnosis he did a gluten challenge and it took

him 9 months eating gluten to get symptomatic). Strangely enough there

have been a few times when eating gluten caused him to toss his cookies.

I don’t know why it happens sometimes and not others (see the discussion

of deep-fried gluten below).

When my boys were little they would get itchy bottoms almost

immediately (less than an hour) upon eating gluten (which at least made it easy

to tell when they got glutened). Unfortunately that has gone away as they

have gotten older. Symptoms range from mild lethargy to behavioral issues

to rashes to getting a cold. It has become obvious that #2 son has a very

clear and predictable reaction to gluten: about 48 hours later he will get a

sudden sore throat that develops rapidly into cold symptoms which soon head

into his chest. Cold symptoms last a week and the cough continues for two

more weeks. I have interpreted this as the gluten taking down his immune

system coupled with exposure to a virus. However, the predictability of

onset and consistent progression of symptoms makes me wonder if exposure to a

virus is even necessary (maybe he carries it?).

How I know it is gluten and not something else is, again,

experience with certain sets of symptoms connected with possible gluten

exposure. In fact, I didn’t believe it for years until it finally

got so obvious that gluten caused these sudden colds (I suspected it for a long

time but I had to be bludgeoned over the head with proof before I truly

believed).

Also, since I have 3 celiacs to compare, it is easy to tell if

they all get sick and I don’t. I still remember with horror the

night 10 years ago in a hotel room after they all ate a bag of Cheetos.

Two little kids and one hubby upchucking bright orange vomit (only one

bathroom) everywhere (try cleaning that up in a hotel room). To this day

NO ONE in my family gets to eat Cheetos, and I don’t care who says they

are gluten-free. How do I know it was the Cheetos? I will

never be sure since we had eaten out that day, but the Cheetos were the one

thing all three of them ate. I eliminated food poisoning since I had

shared lunch with the kids and I didn’t get sick, and I also ate some of

the Cheetos.

Why the vomit response that time when other times the response

is different? I can only guess. The best I can do is assume

the Cheetos were deep fried in contaminated oil, and for some reason deep fried

gluten seems to be associated with vomiting.

So yes, sometimes the response is delayed and you can only guess

at the most likely thing that caused it. That’s what makes it challenging

for celiacs to eat out: there are so many variables. Do you always know

for sure it was gluten? No. Could it be food poisoning or the flu?

Possibly. But while there is often a certain amount of doubt, with

experience a celiac begins to recognize their body’s response to gluten

as separate from other maladies.

The intestinal response is one way the body can respond to

gluten, but 20+ years of experience with celiacs (my family and others) has demonstrated

to me that there is a variety of responses to gluten that can occur, some

within minutes. Remember, this is not just a digestive disease, it is an

autoimmune disease as well, and can affect all systems of the body. Some

people only have dermatitis herpetiformis, an autoimmune response to gluten

that causes itchy rashes, but no intestinal damage at all. Some people

even feel the effects of gluten in their mouths as they eat it. A few

even have an anaphylactic response, although this is rare. Could it be

that there are other factors involved besides the actual celiac disease

itself? Absolutely. Are those other factors related to celiac

disease somehow? Probably. The human body is a complex organism,

and we certainly don’t know everything there is to know about how celiac

disease affects the body.

Unfortunately medical science has no concrete answers for

celiacs for any of these questions. I can only tell you what I have

learned from experience. I hope this goes some way to helping everyone understand

the complexity behind the declaration of having “been glutened.”

Pam Newbury

Santa Cruz Celiac Support Group

From:

[mailto: ] On Behalf Of rami_keisari

Sent: Saturday, February 06, 2010 9:23 AM

Subject: [ ] What is glutened?

So when people say I was glutened what does that mean? How do

you know that it was a gluten reaction and not just spoiled food? How do you

know you don't have an upset stomach? How long after eating the food you feel

bad?

I have heard people say they feel bad 15 minutes after eating gluten and that

is not a celiac reaction; it may take a long time (hours or days) to have a

gluten reaction in your intestines and by then you may have eaten several

things in several places.

Not questioning anybody's symptoms or reaction. Just curious about what the

group thinks.

[Guest guest]

What is glutened? This is a good question & one that has taken me a while to

define for myself. When I first went GF, my symptoms upon becoming glutened (or

what seemed to me was glutened) were usually gastro related -- stomach bloating

& pain, nausea, & diarrhea pretty soon after eating the suspected item.

Now that I am a about 1 1/2 years into the gf diet, my symptoms upon becoming

glutened are more like extreme fatigue, brain fog and mood changes -- I just

want to crawl into bed for the rest of the day & I also have anxiety (and I

remain in the funk with complete fatigue for another week or so -- yes, it

sucks). And, then usually 2-3 days or so after I suspect that I am glutened, I

develop painful blisters on my hands (dermatitis herpetiformis?) that often last

more than a week.

I think you will find that the reactions do vary for people & some people may

not have any noticeable reaction at all. Also, it is often hard to know

definitively what exactly caused it. Further, so many of us develop food

sensitivities to other foods, which complicates matters.

>

> So when people say I was glutened what does that mean? How do you know that it

was a gluten reaction and not just spoiled food? How do you know you don't have

an upset stomach? How long after eating the food you feel bad?

> I have heard people say they feel bad 15 minutes after eating gluten and that

is not a celiac reaction; it may take a long time (hours or days) to have a

gluten reaction in your intestines and by then you may have eaten several things

in several places.

> Not questioning anybody's symptoms or reaction. Just curious about what the

group thinks.

>