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Celiac Vs Guten Intolerence

lilliexx

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lilliexx Contributor
lilliexx
Posted

i was under the impression that all people w/ a gluten intolerence are at risk for developing celiac disease, but my doctor says no.

she said gluten intolerence and celiac disease are two totally different things that may cause similar symptoms.

i do have a gluten intolerence so i thought i might have celiac disease but she doesnt think so becuz im not underweight.....but i have had serious stomach problems for 4 years.

i realize that the only thing you can do for celiac disease is to stop eating gluten, so should i just keep up w/ my gluten-free diet and not worry about finding out if i have celiac disease? or should i get another doctor who is willing to test me?

thanks

lillie

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Racheleona Apprentice
Racheleona
Posted

Hi lilliexx,

My doctor basically said the same thing. Because only my IgG was positive by one point, my doc said I was "non celiac gluten intolerant" and that I should correct it by not eating gluten for a while. I have not read anything that supports that! But he is the doctor that wrote the forward in the book "dangerous grains" and I really trust him with his knowledge. He later in the appt. called a doctor that runs celiac blood tests in california, and told the doc my problems, and the doc said I should go gluten free for life, because I said I got a stomach ache when I reintroduced gluten after being gluten free for almost 2 months. So I really don't know what to tell ya! I'm confused too.

Rachel

lilliexx Contributor
lilliexx
Posted
  • Author

what i'm confused about is, if i were simply gluten intolerant wouldnt my symptoms almost immedietly go away after i quit consuming gluten?? becuz if i dont have celiac disease then there shouldnt be intestinal damage. but i have been off for 5 weeks and still having major problems.

so it leads me to believe i iether have celiac disease, or am still somehow consuming gluten.

Alexolua Explorer
Alexolua
Posted

Not an expert, or a doctor. Though this is what I've believed to be true so far.

lilliexx it sounds like your doctor is clueless. Celiac Disease and a Gluten Intolerance, she claim to be two different things? celiac disease is cause by a Gluten Intolerance. And they are both "cured" the same way. By avoiding gluten the rest of your life.

The only real difference between the two, is that with Celiac Disease, there is damage to the villi in the small intestines. With GI, there isn't. But GI can develop into celiac disease.

I have a gluten intolerance. Also a casein intolerance, and I've been avoiding them for over 10 weeks now. Maybe 11, lol. I'm still not feeling much better. Others can see no improvement for even longer.

It's true, some people have improvement right away though.

It's also possible there may be other foods that bother you.

But when it comes to celiac disease and GI, they are more or less the same thing, and some on these boards just say celiac disease when they are talking about GI anyway. Umm.. hopefully this helped some?

lilliexx Contributor
lilliexx
Posted
  • Author

my doctor said people with celiac disease produce some kind of antibody and people with gi are just sensitive to gluten.

i was tested for a gluten sensitivity but she doesnt seem like she wants to test for other alergies.

i dont have insurance so i have to go to a public health clinic....im thinking that is why she is hesitent to run all these expensive tests.

i know i can do elimination diets, but i just want definate answers!! this is so frusterating.

thanks for the replies!!

tarnalberry Community Regular
tarnalberry
Posted

elimination diets - if done objectively - actually do provide you with definite answers. allergists, when they're unable to get accurate enough information out of blood tests, do elimination and challenge diets. I would encourage you - given the fact that your doc is hesitant to try more tests - to try it, in some form or another.

Tasha2004 Contributor
Tasha2004
Posted

My IgA keeps going up but everything else is normal. They say it is Gluten Intolerance/Latent Celiac.

I have not yet gone gluten-free, but I have a feeling it's coming.

Enterolab says a high IgA means Celiac.

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Alexolua Explorer
Alexolua
Posted
my doctor said people with celiac disease produce some kind of antibody and people with gi are just sensitive to gluten.

You also produce anti-bodies to gluten when you are intolerant to gluten.

i do have a gluten intolerence so i thought i might have celiac disease but she doesnt think so becuz im not underweight.....but i have had serious stomach problems for 4 years.

At first I thought I had celiac disease too, but after learning more, and having a biopsy done that showed no vili damage, I had to admit I didn't have celiac disease. Though I did have gluten anti-bodies in my blood, so am intolerant to gluten. I've also had serious stomach problems for quite some time too.

Also, the doctor I had, despite me not being underweight, did do biopsies, thinking I might have celiac disease too. So maybe it's just because you have to go to a public clinic, or the doctor you're seeing just doesn't know as much about it.

Where do you live? Maybe you could get state-funded insurance? That's what I have.

But maybe the challenge diets would work best. Listen to tarnalberry on it! =)

burdee Enthusiast
burdee
Posted

With all this confusion about celiac disease vs. gluten intolerant, I am soooo glad I did tests through Enterolab which tests for autoimmune reaction to tissue transglutaminase, gluten sensitivity (antibodies), casein sensitivity (antibodies) and small intestinal malabsorption (fecal fat) AS WELL AS the gene test for gluten sensitivity. Even though I had been gluten-free for over 2 months when I took their tests, I still showed positive gluten and casein antibodies and autoimmune reaction to tissue transglutaminase AND the main celiac gene. I did not show malabsorption, but I was taking digestive enzymes at the time of the test (not realizing those might skew my results). Nevertheless the celiac gene test as well as gluten antibodies told ME I have celiac disease AND gluten intolerance antibodies.

I'm glad I didn't rely on blood tests which depend on the 'leaky gut' phenomena in which gluten antibodies leak from the intestines into the blood stream which doesn't happen until after extensive celiac disease damage. I'm also glad I didn't rely on hit and miss biopsies which may not take a damaged chunk of small intestine the first time ... or second time ... Unless the whole small intestine is completely damaged, any of those biopsies could miss the damaged portion. That's a rather unreliable test, too. I would advise anyone who has positive gluten intolerance tests but doubts they have celiac disease to get gene tests. That would confirm celiac disease. ;)

BURDEE

Stoole Newbie
Stoole
Posted

I was diagnosed as gluten intolerant last week based on three blood tests. I have pretty minor symptoms, so my doctor said I could continue eating wheat but just cut way back. I decided to go completely gluten-free anyway.

I have a phone appointment with my doc for Wednesday to discuss intolerance vs. Celiac and what we should do next. Does anyone have any suggestions for what I should ask her?

I definitely want to know why she thinks it's OK for me to have any gluten. I'm wondering if I'm at risk for Celiac and I'm just lucky we caught it now.

Thanks for the advice.

Alexolua Explorer
Alexolua
Posted
I'm wondering if I'm at risk for Celiac and I'm just lucky we caught it now.

I'd say yeah, at risk. If I'm learning things correctly, a gluten intolerance doesn't always lead to Celiac. Might be wrong there. But it definitely leads to other health problems, so why risk getting really sick in the future? I'd say go with being gluten-free completely.

Would say you're lucky it was found now, before you got worse symptons though. =)

GEF Explorer
GEF
Posted

Intolerance can lead to celiac, especially in individuals who are genetically pre-disposed. I'm sure that in some, celiac never develops. There are some here that were intolerant and didn't go gluten-free and then developed celiac year's later.

Gretchen

Alexolua Explorer
Alexolua
Posted

Yeah.. the odds are much much greater for developing celiac disease. Though throwing out personal experience, after about 10 years I haven't developed celiac disease, when my symptons first started.. of course, my symptons have gotten so bad, really can't live life.. so, even if you don't officially develop celiac disease, being off gluten is a good thing. =)

lovegrov Collaborator
lovegrov
Posted

Yep, if you can't function or you feel like crap all the time, I don't reckon it matters what they call it. You still need to avoid gluten.

richard

Stoole Newbie
Stoole
Posted

Thanks for the help, everyone.

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