9 replies to this topic

[pennypicker]

I was diagnosed in 2008 by blood tests then confirmed by biopsy. I have celiac disease. I've been gluten free ever since. Initially I was extremely cautious. However over the last 6 months or so I've become a bit more relaxed, and if something 'looked' gluten free at a party I would try it. Amazingly this method worked for me and I never get sick.

About a week ago I screwed up big time while eating sushi. I unknowingly ate a piece with chopped tempura in it. I was expecting the worst but only noticed a canker sore on my lip - no appreciable GI distress.

So here's my question: it appears as if I am a celiac that is somewhat insensitive to gluten (sounds like an oxymoron?). If I get traces of gluten in passing I observe no effect, a little bit of gluten (like that tempura roll) I see mild effects. I suspect, but am not willing to find out, if I had a big bowl of pasta I'd get very sick again.

Does this make any sense given what we understand about celiac disease? I'd appreciate anyone's thoughts on the subject.

Also, does this means it's safe for me to ingest trace amounts of gluten?

[Metoo]

Think of it this way, Celiac is an autoimmune disorder, in otherwords when you ingest gluten, your body attacks itself. In doing so it also causes inflamation.

So...no matter how little gluten you are ingesting, and whether you have 'noticeable' side effects you are still causing damage within your body, you are still also causing inflammation...and long term inflammation causes all kinds of problems including cancer.

[love2travel]

I was diagnosed in 2008 by blood tests then confirmed by biopsy. I have celiac disease. I've been gluten free ever since. Initially I was extremely cautious. However over the last 6 months or so I've become a bit more relaxed, and if something 'looked' gluten free at a party I would try it. Amazingly this method worked for me and I never get sick.

About a week ago I screwed up big time while eating sushi. I unknowingly ate a piece with chopped tempura in it. I was expecting the worst but only noticed a canker sore on my lip - no appreciable GI distress.

So here's my question: it appears as if I am a celiac that is somewhat insensitive to gluten (sounds like an oxymoron?). If I get traces of gluten in passing I observe no effect, a little bit of gluten (like that tempura roll) I see mild effects. I suspect, but am not willing to find out, if I had a big bowl of pasta I'd get very sick again.

Does this make any sense given what we understand about celiac disease? I'd appreciate anyone's thoughts on the subject.

Also, does this means it's safe for me to ingest trace amounts of gluten?

Well, I was able to consume enormous amounts of gluten without getting sick at all but because my bloodwork was positive and biopsies indicated my villi were flattened, I have been strictly gluten free for nine months and will not even think of trying gluten. Reason? Even if I do not FEEL sick from gluten, my villi would be seriously damaged and I want to avoid other illnesses. Not only that but consuming gluten could trigger all sorts of things and I do not want to deal with that possibility. Celiac = No Gluten Ever in my world. Not even a teeny bit. I am taking no chances with my health and my future.

However, I can certainly see how it would be tempting if you do not feel ill.

Hopefully this helps to put things into perspective from someone who did not feel sick at all from consuming gluten!

[Lisa]

Since 2008 you have been gluten free. I would expect that you are in, what I call remission. For me, it would take repetitive glutenings over an unknown period of time, creating damage, for me to be symptomatic again. Or, built up to the point where I can be aware of a symptom.

But, everyone is different.

[burdee]

I was diagnosed in 2008 by blood tests then confirmed by biopsy. I have celiac disease. I've been gluten free ever since. Initially I was extremely cautious. However over the last 6 months or so I've become a bit more relaxed, and if something 'looked' gluten free at a party I would try it. Amazingly this method worked for me and I never get sick.

About a week ago I screwed up big time while eating sushi. I unknowingly ate a piece with chopped tempura in it. I was expecting the worst but only noticed a canker sore on my lip - no appreciable GI distress.

So here's my question: it appears as if I am a celiac that is somewhat insensitive to gluten (sounds like an oxymoron?). If I get traces of gluten in passing I observe no effect, a little bit of gluten (like that tempura roll) I see mild effects. I suspect, but am not willing to find out, if I had a big bowl of pasta I'd get very sick again.

Does this make any sense given what we understand about celiac disease? I'd appreciate anyone's thoughts on the subject.

Also, does this means it's safe for me to ingest trace amounts of gluten?

Active celiac disease (continuing to consume gluten) is correlated with many autoimmune diseases (including MS, type 1 diabetes, rheumatoid arthritis, lupus, Hashimoto's thyroiditis, Sjogren's, etc., etc.). So is you don't have any reaction symptoms typicaly associated with celiac, you may continue to damage your intestines enough to let all those gluten antibodies wreck havoc on any number of other organs in your body and cause any of those autoimmune diseases. Of course, if you go to mainstream docs with symptoms of those autoimmune diseases, they will gladly prescribe for you drugs to treat your symptoms, while you continue to eat gluten and continue the damage which caused the autoimmune problems.

Also, many people find that after long periods of abstinence between episodes of gluten consumption, their reaction symptoms are more and more severe. So if you keep having occasional gluten, you may indeed develop traditional (painful) gluten reaction symptoms.

Some of us who were not diagnosed until midlife (after years of misdiagnoses) have all those painful reaction symptoms AND autoimmune diseases. Lucky you for getting diagnosed before you had really serious damage. Stay healthy by abstaining from gluten.

[domesticactivist]

Just chiming in here to echo what the others have said - you have celiac disease. Even if you don't feel it right away, gluten triggers autoimmune damage which is *not* a good thing!

I wonder if some of the variance in people's reactions has to do not only with the extent of the damage, but also with having different types of reactions as well. Some people are celiac AND allergic to wheat AND otherwise gluten-intolerant - allergies typically have immediate reactions and intolerances typically have a reaction anywhere from right away to a few days later.

When we first went gluten-free over a year ago I felt horrible in general (withdrawal), my digestion was totally out of whack, and I was pretty sure I could feel it when I got glutened, mostly with brain fog but also digestive upset.

A year later I am now doing a gluten-challenge. (I want to get tested for celiac disease - no idea if I have it or if I am "just" intolerant.) The first few days I felt great! I couldn't believe it. Then the symptoms started setting in. Now it's been a month and I feel awful all the time, I stink to high heaven, my moods are all over the place, weird neurological and arthritic symptoms I used to have have come back, my digestion is a mess, etcetera and so forth. This stuff builds up on you.

[Katrala]

I'd say the majority of those with celiac have no major outward GI symptoms.

Which is why it's under diagnosed.

The symptoms of celiac also appear like other diseases as well, so I'd say it's not the easiest to diagnose. Plus, docs are still in the learning phases.

[burdee]

I'd say the majority of those with celiac have no major outward GI symptoms.

Which is why it's under diagnosed.

The symptoms of celiac also appear like other diseases as well, so I'd say it's not the easiest to diagnose. Plus, docs are still in the learning phases.

Even when we do have obvious GI symptoms (gas, bloating, gut pain, constipation and/or diarrhea), doctors have scuh a rigid profile for celiac disease that they say things like "you don't have diarrhea, you can't have celiac" or "you are too old to have celiac" (after years of mis diagnoses) or "you have IBS like everyone else your age, learn to live with it", etc., etc. So many people with obvious GI symptoms either get misinformation about blood tests (like "you don't need to eat gluten before the test") or get an inadequate number of biopsy samples (although 5 samples are recomended, most lab techs only get about 3) or they get told they don't have celiac disease because they don't fit the doc's rigid profile for that disease.

[Katrala]

you don't have diarrhea, you can't have celiac"

I went to the doc for my checkup earlier this week and he was surprised to hear I wasn't having D, but the opposite.

He said "that's odd."

And I consider him good compared to other stories I've heard.

[curlyfries]

Since 2008 you have been gluten free. I would expect that you are in, what I call remission. For me, it would take repetitive glutenings over an unknown period of time, creating damage, for me to be symptomatic again. Or, built up to the point where I can be aware of a symptom.

But, everyone is different.

Exactly. It seems that for some people who have been gluten free for a number of years and then do a challenge, it takes awhile for the damage being done to manifest itself into noticeable symptoms. You've probably done a good job of eating gluten-free for the past few years and you intestines are in pretty good shape.....unless you continue to eat gluten (even trace amounts will cause damage, noticeable or not). I predict that if you continue being lax about the trace amounts, the more issues you will begin to notice down the road, until you are right back where you started in 2008. When you were originally diagnosed, you were probably having issues long before you realized there was a problem.