Celiac Disease Vs. Gluten Intolerance

[billy]

i had a biopsy and blood test about 1.5/2 years ago, which came back negative (i believe because i had been gluten free for months), so my gi doc told me i had ibs with a gluten and dairy intolerance.

i think i have asked this before a while back, but this is still confusing to me: is there a difference between celiac and gluten intolerance?

i have an endo who still swears i'm celiac due to some other health problems (osteoporosis, arthritis, can't gain weight, etc.); however, i haven't shown vitamin deficiency either. should i ever be retested?

thanks...

[Ursa Major]

Are you eating gluten-free? Why would you think you need to ever be retested, what would be the point? All you need to do is, to be gluten-free and dairy free, and you'll be okay. If your blood test was positive, and you are feeling better on the diet, you obviously have celiac disease, and that's that.

If you have osteoporosis, it seems likely that you're at least deficient in vitamin D and calcium and magnesium. Have the levels for those been tested?

[Nancym]

This is a very gray area but a lot of doctors who do work in this field are coming to believe that gluten sensitivity without villious atrophy is very damaging too. It is associated with all kinds of diseases, especially autoimmune diseases. Read the book "Dangerous Grains" and read over the papers on Dr. Fine's web site about why gluten sensitivity should be treated as seriously as full-blown Celiac disease.

[CarlaB]

Your gluten-free diet at the time of testing would be the reason you didn't have villous atrophy. Same thing happened to me. I had all the celiac symptoms, figured out gluten caused me problems, by the time I got tested I was healed enough that nothing showed up. I feel lucky that I figured it out on my own and that the damage was healed enough that my tests came out clear. I also feel lucky that my insurance company does not consider me to have the disease.

It does not matter if it's celiac or gluten intolerance. To me, it seems to be just a matter of semantics, both can have the same symptoms, both can be autoimmune, both require a gluten-free diet -- the only difference is that in celiac they have found villous atrophy. Does this mean that someone who had villous atrophy and it's now healed is no longer celiac but gluten intolerant? So, I think they're both the same thing, it's perhaps only a differentiation in how far progressed your disease was when discovered -- or in your and my cases, how far along the healing was.

No need to be retested.

[billy]

Are you eating gluten-free? Why would you think you need to ever be retested, what would be the point? All you need to do is, to be gluten-free and dairy free, and you'll be okay. If your blood test was positive, and you are feeling better on the diet, you obviously have celiac disease, and that's that.

If you have osteoporosis, it seems likely that you're at least deficient in vitamin D and calcium and magnesium. Have the levels for those been tested?

sometimes i'm gluten-free, sometimes i'm not. i'm one of those stubborn patients who need to hear a diagnosis with the positive test (i was negative on both) to start the therapy since the doctor thinks i'm fine. but i obviously have all the gi symptoms and other weird reactions (instant stomach pain, headache, fatigue, etc.) after eating gluten and i know i should go completely gluten-free...

my calcium and vit d were normal at last check; in fact, up until a month ago, my kidneys weren't filtering the calicum at all, causing kidney stone disease. but my magnesium has never been tested. anyway, thanks for your insight. i appreciate the candid advice!

This is a very gray area but a lot of doctors who do work in this field are coming to believe that gluten sensitivity without villious atrophy is very damaging too. It is associated with all kinds of diseases, especially autoimmune diseases. Read the book "Dangerous Grains" and read over the papers on Dr. Fine's web site about why gluten sensitivity should be treated as seriously as full-blown Celiac disease.

i will definitely read that book, thank you! i'm actually being tested right now for ra and lupus (i believe the latter started rearing its ugly head about seven years ago when all my health problems started). i will also share this with my doctors and my father, who is arguing that the intolerance isn't as bad as and is completely different than celiac disease. thank you!

[tiredofdoctors]

I think you're on the right path. I'm negative for everything except antigliadin antibodies, which, according to my neuro doc, were "outrageously high". Played a number on my brain, let me tell ya. Good idea to get re-tested. They're finding more and more that Celiac doesn't necessarily mean just gut anymore . . . my neuro still says I have Celiac, even though the GI doc continues to tell him it's not CELIAC, it's GLUTEN INTOLERANCE . . . . semantics

[billy]

Your gluten-free diet at the time of testing would be the reason you didn't have villous atrophy. Same thing happened to me. I had all the celiac symptoms, figured out gluten caused me problems, by the time I got tested I was healed enough that nothing showed up. I feel lucky that I figured it out on my own and that the damage was healed enough that my tests came out clear. I also feel lucky that my insurance company does not consider me to have the disease.

It does not matter if it's celiac or gluten intolerance. To me, it seems to be just a matter of semantics, both can have the same symptoms, both can be autoimmune, both require a gluten-free diet -- the only difference is that in celiac they have found villous atrophy. Does this mean that someone who had villous atrophy and it's now healed is no longer celiac but gluten intolerant? So, I think they're both the same thing, it's perhaps only a differentiation in how far progressed your disease was when discovered -- or in your and my cases, how far along the healing was.

No need to be retested.

it's nice to know i'm not alone! thank you for your take on the two. the consensus seems to be that both cause the body to react in a negative way. now why couldn't my gi doc have told me this??? i think i know what i have to do... thanks for the post!

I think you're on the right path. I'm negative for everything except antigliadin antibodies, which, according to my neuro doc, were "outrageously high". Played a number on my brain, let me tell ya. Good idea to get re-tested. They're finding more and more that Celiac doesn't necessarily mean just gut anymore . . . my neuro still says I have Celiac, even though the GI doc continues to tell him it's not CELIAC, it's GLUTEN INTOLERANCE . . . . semantics

wow, sorry to hear about the effect it had on you. do you know if the gluten attacks the central nervous system too? i have unexplained neuropathy (just about everything i have is idiopathic...my 10+ specialists always say i'm a challenge...not exactly the words you want to hear from a specialist). i'm wondering if my whole body is screaming for help because of this. hmmm. thanks for the comment!

[tiredofdoctors]

Boy, howdy does it have an effect on the Central Nervous System! I have "Gluten Ataxia" -- the Perkinje cells in the cerebellum rely on gliosis for their nutrition . . . Unfortunately, one of the proteins on the Perkinje cells strongly resembles gliadin. The Antigliadin antibodies, in my case, have attacked these proteins. So it's as if I have small "shorts" in the electrical wiring throughout my cerebellum. I walk like the worst drunk you've EVER seen . . . in fact, my rheumatologist, neurologists and physical therapist (I'm also a PT), have all recommended that I use only my wheelchair, because the manner in which I walk, not to mention my falls, are taking a HUGE toll on my joints and spine. I also have MAJOR peripheral neuropathy. I'm to the point that, if I'm wearing shoes, I can't feel the ground beneath me -- only the shoes, and I fall MUCH more.

What's funny is that I should have known better . . . it was my secretary that pointed out to me how much I fall . . . before I had to close my office. She said that she waited for the "thud" in the room when I was treating someone . . . I just chalked it up to being "tired". I also didn't even THINK about the peripheral neuropathy when I stepped into the bathtub with no problem, but burned my butt every time!

There is a physician that was considered a quack 5 years ago for presenting this theory . . . five years later, no one's laughing at him anymore . . . I can''t remember his name -- I also have "word retrieval" difficulties because of the cerebellum . . . it controls a LOT more than we know . . . but he is in the UK.

Best of luck to you. I'll be sending good thoughts and prayers your way . . . If you want any additional info (because the people on this forum are probably SICK of hearing my story!), feel free to e-mail me at bodyworxinc@hotmail.com!

Lynne

[occi]

Thanks soooo much all of you for your posts! What i mean is, its so nice to not feel so stupid anymore! I started not eating wheat, then gluten, because of symptoms and 'inconclusive' test results and now the GP and Gastro think im nuts because i cant have coeliac confirmed! Now i feel better that perhaps gluten intolerance really does exist, and that i can be satisfied with my own diagnosis after all

Cheers all,

Hannah

[eKatherine]

sometimes i'm gluten-free, sometimes i'm not. i'm one of those stubborn patients who need to hear a diagnosis with the positive test (i was negative on both) to start the therapy since the doctor thinks i'm fine. but i obviously have all the gi symptoms and other weird reactions (instant stomach pain, headache, fatigue, etc.) after eating gluten and i know i should go completely gluten-free...

So what will you do if the next test you run comes up negative, as it may? Would you keep eating gluten until you were deathly ill with permanent damage to your body?

[AndreaB]

I know this has already been mentioned but gluten intolerance and celiac are the pretty much the same thing. I consider gluten intolerance on one side of the line and celiac on the other side, differing degrees of other diseases and damage but still gluten free for life. If you have the funds and want more concrete evidence of your status I would recommend enterolab.com. We had our family tested and are among those that would not have known anything was brewing if we hadn't been tested. My oldest son has mild malabsorption too but no symptoms of anything being wrong. None of us had any symptoms of gluten intolerance, just went off of my allergy tests to decide to get tested.