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Celiac Or Gluten Intolerant: Does It Matter?


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24 replies to this topic

#1 Judithg

 
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Posted 03 August 2004 - 10:15 AM

Hi,
I'm fairly new here, and I continue to have confusion about my diagnosis (I posted some questions about this on the pre-diagnosis and testing page). I have tried to be gluten-free for years after being tested in routine allergy testing as allergic to gluten. At that time I had the blood tests and endoscopy with biopsy--all were negative for celiac. Blood testing has improved in recent years, so my doctor had me get tested again recently. But he didn't have me reintroduce gluten before the test--he said it wasn't necessary. Now I'm not sure that's right.

I don't want to do any more tests. They're expensive and frustrating. I believe I feel better when I'm gluten-free, although I have had a year of not being well at all. However, I am now beginning to identify a bunch of products that I thought were safe that may not be after all. So that could be the problem. I'm now trying to be completely gluten-free to see if it makes a difference.

I'm curious if there are others in this forum who have never received a definitive diagnosis, and are maintaining a gluten-free lifestyle anyway. Is there any point to pushing the testing issue to get a solid diagnosis? I think I have always felt that if I were just gluten intolerant, I would at least be able to get away with the occasional NGF food, but that if I knew for sure I had celiac disease, I'd be more motivated to stay completely gluten-free. Does this make any sense?

Thanks!
Judith
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#2 tarnalberry

 
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Posted 03 August 2004 - 02:25 PM

Eh... the last sentence doesn't make sense to me, 'cause you'll still make yourself sick if you eat gluten even if you're "only" gluten-intolerant. If you take the hard stance that celiac only occurs when you've got distinct damage in the intestines, then all of us who eat gluten-free, eventually stop being celiac and just gluten-intolerant. Doesn't really matter - it means your immune system reacts to gluten, so you don't eat it.

As you can see by my signature, I wasn't definitively diagnosed, just saw that I felt better on the diet, and stay gluten-free. It's not that hard when you get fully adjusted (but that takes a mental adjustment as well, and that can be harder than figuring out what foods you can have), once you figure out whether or not you want to commit to it.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#3 stef_the_kicking_cuty

 
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Posted 04 August 2004 - 09:12 PM

Hi Judith,

my doctor didn't have me reintroduce gluten as well before the test. He said that wouldn't be necessary as well. What a crap! Of course it's necessary. How can the tests be positive, if your body doesn't react, because you eat glutenfree?

My blood tests were negative, too. In the german forum (i'm german by the way) they are warning the people to stay on gluten until the tests are done. Otherwise the results can be falsified.

Other than that i made a "food protocol" and i found out, that it's really the gluten, that causes the symptoms. My doctor found that pretty strange (he didn't say why), but he also said, if i feel better, when eating glutenfree, i should stick with it. Because a good food protocol is as good as a diagnosis. And just to give you more information. That's the common opinion in germany, too. You don't really need a positive test result to be a celiac patient. This food protocol can show it, too.

What i want to say actually. If it makes you feel good, stick to it and listen to your body.

Greetings, Stef
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#4 Guest_TESTinME_*

 
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Posted 05 August 2004 - 11:41 AM

Well I say screw 'em all. My idiot DR thought I had IBS...I read about different digestive deseases and tried different things. Imagine my surprise when I started feeling MUCH better being off gluten. I have never had a proper diagnoses and never will. I don't see the point if I'm healthy and my digestion is normal.
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#5 kalo

 
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Posted 07 August 2004 - 01:31 PM

You could always do the stool test at enterolabs.com. Very accurate. But I've heard from many on this board that went gluten-free, got well and decided to stay that way REGARDLESS of testing. Gluten intolerance just means that your intestines aren't damaged yet. If you continue to eat gluten (providing you do have gluten intolerance) you will EVENTUALLY get full blown celiac. Not a comforting thought.
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Hugs, Carol B Enterolab diagnosed gluten sensitive and casein allergic June 04

#6 Isabellamac

 
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Posted 08 August 2004 - 06:23 AM

Hello. I'm fairly newly diagnosed with full blown celiac disease. More than twenty years ago I found that wheat was not agreeing with me and made me ill so I asked the doctor for tests. They did a biopsy which turned out negative so I was assured I could stop worrying about celiac disease - I didn't have it and never would need to worry about it...I was made to feel like a hypochondriac in fact. Because of the attitude, I decided not to bother the doc with this problem any more and to handle it myself. I avoided gluten for a long time and felt a lot better for it. But I hadn't been diagnosed with celiac disease so I started cheating once in a while - I didn't really have the disease so why not - it made my social life so much easier if I could have wheat occasionally. And so it went on - I enjoyed the bread, cakes etc and started eating more and more - not every day but two or three times a week.
Then the diarrheoa started last December. I had to get help in the end. A blood test showed positive for celiac disease and then I had the biopsy which was positive too. I was right so many years ago and they were wrong - my doctor admits this. I have been completely gluten free now for 3 months and I still have the symptoms - can't seem to get rid of the 'D' no matter what I do. My intestine has been so badly damaged that it is going to take a long time before it heals - if it ever does!
So Judithg - do something about it now - before it is too late....
All the best to you...Isabellamac
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#7 flagbabyds

 
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Posted 08 August 2004 - 07:24 AM

A posotive dietary change is a diagnosis in itself, if you really want to know for sure eat wheat for 3 months and then have the blood and the biopsy tests, but if you don't want to do any more tests then just try the diet for 3 months and if you feel better then you willl know you have the disease.
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Molly

#8 Judithg

 
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Posted 10 August 2004 - 08:40 AM

Thanks for all the interesting responses! I can see that several of you have had similar experiences. I think I may be testing negative because I was gluten-free at the time of testing--or, maybe I haven't developed full-blown celiac disease as yet but will if I'm not gluten-free.

Like Isabellamac, when I didn't get a celiac disease diagnosis years ago, I felt like I could cheat once in awhile and it wouldn't kill me. I know people who have mild allergies to certain foods and they can eat them once in awhile without getting really sick. So I figured I could do the same. In the past 6 years, however, I kept getting worse and worse digestive problems. If I am more careful to be gluten-free, they seem to get better (though not immediately--sometimes it takes a few weeks or so). I just went through a horrible year of stomach problems with the doctors thinking it was IBS, IBD, Crohn's, cancer, stress, etc. I tried being truly gluten-free, but I kept having digestive problems. However, I think I was eating some stuff that I didn't realize was not gluten-free, including some medications. Plus, it seems that it can take time to heal once you're completely gluten-free.

I had a colonoscopy a few weeks ago, and I determined that I was going to be totally gluten-free from that point forward (just seemed like a good starting point, especially since it showed no disease). I have been super careful. Then on Friday, my husband and I went to a restaurant--first time in quite a while. I asked the waiter about every single thing. I sent him to ask the chef questions, and he told me the spring rolls were gluten-free (rice wraps, rice noodles; fresh veggies; no soy sauce). He brought them to me, and I started eating. About halfway through the plate, he swooped in, took the plate and said, "Sorry, I double checked, and the chef said the noodles have wheat in them. Good thing I double checked." I was livid! "Good thing" indeed! I hoped that it was a small enough amount not to cause a major problem, but by the middle of the night on Saturday, I had horrible gut pains and by Monday I was really sick. This is the first time I've seen this kind of clear action/reaction. Now I feel like I have to start all over again.

Anyway, I'm going to stick with gluten-free and skip re-testing. I don't want to eat gluten for 3 months just to get an accurate blood test!

One thing that confuses me still: if someone is gluten intolerant and they eat gluten, will they always eventually developed celiac disease? Or can gluten intolerance exist as its own problem separate from celiac disease?
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#9 lovegrov

 
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Posted 10 August 2004 - 09:17 AM

"One thing that confuses me still: if someone is gluten intolerant and they eat gluten, will they always eventually developed celiac disease? Or can gluten intolerance exist as its own problem separate from celiac disease?"

I'm not sure there's any definitive answer to this. Some think gluten intolerance is merely an early stage of celiac while others think some people can just go along as gluten intolerant.

richard
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#10 GEF

 
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Posted 10 August 2004 - 09:24 AM

Richard,

I'm curious as well... I just posted that question. :)
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#11 kalo

 
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Posted 10 August 2004 - 10:00 AM

Well that's interesting. I was under the impression from my 3-4 months of research that gluten intolerance untreated will lead to celiac. I didn't know that there was another train of thought. <_<
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Hugs, Carol B Enterolab diagnosed gluten sensitive and casein allergic June 04

#12 GEF

 
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Posted 10 August 2004 - 10:17 AM

It was truly an assumption on my part... due mostly to the non-concern of doctors I've visited. It seems that many are more concerned about a patient having to make the strict dietary change over a condition that hasn't been diagnosed 100%, than they are about the effects of non-treatment.
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#13 tarnalberry

 
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Posted 10 August 2004 - 11:14 AM

I think that's from two pieces of misinformation many doctors have:

1. There aren't any serious long term complications from being celiac (except symptoms) or that going gluten-free doesn't reduce the risk of the long term complications (my allergist fell into the later category).

2. The diet is overbearingly hard, painful, and practically impossible for anyone but the most intelligent and isolated person in the world. (My allergist also fell into this category. Of course, I'm using a bit of hyperbole here, but you get the idea.)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#14 lovegrov

 
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Posted 10 August 2004 - 12:52 PM

" Well that's interesting. I was under the impression from my 3-4 months of research that gluten intolerance untreated will lead to celiac. I didn't know that there was another train of thought."

Part of this is semantics. Read below what Dr. Fine says (I've heard the same elsewhere, but can't remember where):

"With better understanding of how gluten triggers immune and autoimmune reactions in the body under the control of various genes, and advancing techniques of detecting these reactions, it is becoming apparent that the majority of the gluten sensitive population (the submerged “mass of the iceberg”) do not manifest villous atrophy in its classic, complete form and therefore do not have celiac disease."

Officially, celiac disease doesn't happen until you have villous atrophy. However, many of those without atrophy are suffering ill effects and, of course, some of those will go on to develop celiac. The answer, whether or not it's celiac, is to go gluten-free.

richard
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#15 judy04

 
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Posted 10 August 2004 - 04:24 PM

Hi,

Just wanted to contribute. I had a neg biopsy, neg for celiac gene,
no apparent damage to the villi, elevated IGA only but yet I
react violently to a small speck of gluten and I am sick for almost
3-4 days. I know I'm not a "true celiac" but I have a definite
gluten sensitivity. I think I am one of those "below the iceberg"
and I think that perhaps another whole gene will show up for this
condition...
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judy


gluten-free since 11/03, neg biopsy, IGA elevated




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