Mild Celiac A Myth?

[JoeyStardust]

Dear Anti Glutenites,

I'd love some words of wisdom on my situation.

I had been having digestion problems for the past 6-months. I had the runs every day. After multiple visits with my primary care doctor we ran a blood test for celiacs--came back as negative. (whew!) We then tested me for every infection and parasite known to man! With no relief. Fast forward to last month. I went off gluten for 3 days, and low and behold I was much improved! (I nearly took a picture of my first solid normal stool).

In the last few weeks I've cut gluten from my diet by 90%, with the occasional chocolate cookie, chicken nugget with breading, or soy sauce on my rice. And my symptoms are still basically in remission. Can I get away with going "nearly" gluten free??? Should I get to a GI doctor and have an EGD scope to truly see if I'm legit celiac? Remember my blood-work said I was not.

My cousin who's had this disease for years says, "even mild celiacs are having their intestinal Villi's destroyed and you'll risk malnutrition... and they can take 6-months to grow back!" --- Yikes

I don't know if I'll have the will power to stop eating gluten 100% as I don't experience the crippling pains and/or bowel movement issues. Food is addicting! Does Mild Celiacs Exist? Does Gluten Intolerance Exist? Should I shell out $900 bucks and pay for an EGD scope to truly know? Does one tiny bit of gluten kill all the intestinal villi leading to 6-months of no nutrient absorption? HELP!

Sincerely,

Joey

[RideAllWays]

There are people who don't get visible symptoms but the villi damage is still there, I think I've heard it referred to as "silent Celiacs". If you are still having bits of gluten, go back on full gluten and get a biopsy...then you will know for sure whether or not you actually have the disease. But if you do feel tons better gluten-free, might as well go off it and stay off it! It will make your life slightly more complicated but so so much better.

[Gfresh404]

I don't know if I'll have the will power to stop eating gluten 100% as I don't experience the crippling pains and/or bowel movement issues. Food is addicting! Does Mild Celiacs Exist? Does Gluten Intolerance Exist? Should I shell out $900 bucks and pay for an EGD scope to truly know? Does one tiny bit of gluten kill all the intestinal villi leading to 6-months of no nutrient absorption? HELP!

I would say that Mild Celiac Disease does not exist. However, I am tempted to say that Mild Gluten Sensitivity does - albeit, on a certain level.

Consuming small amounts of gluten in a non-celiac gluten sensitive person might not trigger any noticeable symptoms. However, that is NOT to say that no damage is being done (internally).

I would save your money. Either way the endoscopy isn't going to tell you much. You clearly have some issue with gluten.

I would say at this point, your best bet is to go 100% gluten-free. I honestly don't know if consuming small amounts of gluten is going to do anything, especially if you're not experiencing any negative side effects. BUT if damage is being done to your body internally - well then that's serious. Gluten sensitive individuals that continue to consume gluten usually end up with stomach or colon cancer.

I would think that when you consume small amounts of gluten - a small amount of damage is done to your small intestine - small enough so that you don't really notice it. And when you consume large amounts of gluten - a moderate to large amount of damage is done to your small intestine - large enough so that you DO notice it. But whether you're aware of it or not, I think that when you consume gluten, you are doing your body harm.

[Skylark]

I think if you want to continue to consume gluten that it would be wisest to get the biopsy. As others have said, you can be biopsy-positive with negative blood tests and really do a lot of damage if you keep eating gluten.

[hoot]

I don't remember exactly which study this was from, but gluten sensitivity expert Dr. Thomas O'Brien mentioned this in a radio interview. Basically, for every celiac diagnosed with the standard blood test, there are eight undiagnosed celiacs with no gastrointestinal symptoms. Also, the standard blood tests only work when you have total or near total villous atrophy, otherwise they are mostly false negatives. Even a biopsy of the duodenum (which is the furthest they can reach with an endoscope) may come back negative if you have celiac, as the damage to the villi can be patchy, and may be in the jejunum or ileum, further down in the small intestine. Celiac is very hard to diagnose, but in a month or two there should be a new saliva test out, or so Dr. O'Brien said in the interview, that is supposed to be as accurate as the blood test is when you have total villous atrophy, to gluten sensitivity. So that's going to change a lot of things if it's true.

Here is the interview:

Open Original Shared Link

And no, if you have celiac you can't get away with eating "just a little" gluten, it'll come back and bite you in the ass. My symptoms were actually milder when I ate gluten. Then I went gluten-free by accident, felt much better, returned to gluten and felt ten times worse. It seems the longer you go without gluten, the more sensitive you become to it, but at the same time you feel a lot better and have a MUCH lower risk in developing serious complications in the long-term.

This is just anecdotal, but one guy I read about went gluten-free for a few months, felt normal again, then reintroduced gluten for a week and had an acute pancreatitis attack. Docs did al the tests and found nothing that would have caused it. Gallbladder, liver and pancreas were all otherwise fine according to blood tests, CT scans and upper abdo ultrasound. So, beware of gluten, or face the consequences.

[T.H.]

You could definitely have celiac disease with a false negative blood test, but what I've heard is you'll need to go on a gluten diet for 6 weeks before trying a biopsy, if you want one.

If you have a cousin with celiac disease? You are in the group of folks where 1 in 56 have celiac disease. If you have symptoms? I'd say the odds are even greater.

gluten intolerance exists, last I heard. Mild celiac disease, nope. You may be less sensitive and not react to as little gluten as others. However, I was reading a study a few weeks back that said there seems to be little correlation between how strong your 'outward' reaction is and how much damage it actually being done to your villi - they had celiacs volunteer to be scoped after having gluten and check it out.

As for the damage gluten can do if you are a celiac? This is what my GI told me.

1) Every time you eat gluten, your immune system attacks you, and ignores everything else. It will leave you immuno-compromised for a few days up to a couple weeks, depending on how quickly you heal. This may not sound like a big deal, but if you encounter something nasty during this time, it'll mess you up. I ran into a fungus when immuno-compromised. usually, it causes a cough, but in immuno-compromised folk it can escape the lungs and invade the body. I was feverish, had difficulty walking at all, and had constant pain for about a year from that one.

2) How long you are damaged depends on how much gluten, and how much damage your own body does when it attacks you, so there's no real way to say how much damage that is. It could be days, weeks, months - it all depends. Most likely is a couple weeks, I believe. But every time you get damaged, it affects your absorption, and that affects EVERYTHING. It makes you more susceptible to stomach and intestinal cancers, the deficiencies can cause problem in any organ, gone, tissue, etc.... in your body. My father had to have both hips replaced, lost half the discs in his spine, and his lungs are permanently damaged, and they believe it is all from nutrient deficiencies when he was getting gluten.

I think a good study that indicates just what this can do to us was this: Within the past couple of years, they tested frozen blood from the 50's for celiac disease- thousands of individual's blood. Of the people who tested positive, I believe it was something like 40% had already died from what they believe were celiac complicated problems.

I'd say it's definitely worth it to stay gluten free, if celiac disease is what you have. And if you think the diagnosis would help your will power? I'd say it's worth the money to get the endoscopy done.

[sb2178]

I had a normal biopsy, but I had still lost almost 6% of my bone density in about 14 months. That's an enormous loss considering that I should be gaining or at least losing none. High rates of bone density loss are 2% per year, and those are typically found in eating doisorders, perimenopausal women who don't get enough calcium or have steroid exposure etc! ( I am neither.) Gluten intake has been blamed for the development of arthritis too.

My first round of blood work was also negative but the second round, 6 weeks later, was positive. The dietary response really indicates that you have a clear problem with gluten and need to avoid it. While you may or may not be on the celiac track, or neuro celiac track, it's much easier avoid it entirely than to chance the development of lymphoma etc later. You can probably not be obsessive about cross contamination, but I'm finding that I'm more sensitive the longer I've been gluten-free. Maybe that will fade... I don't know.

Get the biopsy if you need that validation, but they can have false negatives there too. The pace and process of the disease is not really well understood, from the lit I've been reading. A second round of blood work after a full gluten challenge may be helpful if you are in a very early stage of development.

Do you know what tests they ordered? They may have also not ordered a full panel.