Celiac Or Gluten Intolerant: Does It Matter?

[Judithg]

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

[tarnalberry]

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.

[stef-the-kicking-cuty]

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

[Guest TESTinME]

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.

[kalo]

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.

[Isabellamac]

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

[flagbabyds]

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.

[Judithg]

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?

[lovegrov]

"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

[GEF]

Richard,

I'm curious as well... I just posted that question.

[kalo]

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.

[GEF]

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.

[tarnalberry]

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.)

[lovegrov]

" 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

[judy04]

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...

[Guest ~wAvE WeT sAnD~]

Hey everyone!

I agree with all of you, but I just wanted to add that I think if worst comes to worst before a biopsy, consider the impact your prolonged symptoms will have on your body/overall health before you decide to reintroduce gluten:

For example: If you are vomiting for several weeks off/on, and can't get through meals without vomiting, how much more helpful will it be for your biopsy? Is it worth the harm, since one must wait at least a month to see a specialist? That was my case, and at the worst point I kept NOTHING down---I probably would have died.

Otherwise, I wouldn't know, but it's up to you.

[juice]

Hi

You can be gluten intolerant and not have Celiac. You can never get celiac if you do not have the gene. Even if you are gluten intolerant only, it will never turn into Celiac. You can have a copy of a gene that predispsoses you to gluten sensitivity. Now the question, so it is better just to be gluten intolerant? The answer is NO! In either case you can develope damage to the villi. Of course the chance of damage with Celiac is evident and the damage you get to your villi with just gluten sensitivity could be as low as 1%, but that doesn't mean it is ok to eat gluten because you are very susceptable to all the autoimmune diseases, (lupus, RA, ect, and of course ailments like bone pain, nerve damage, I could go on). So the bottom line is, what ever your diagnosis is, Do not eat GLUTEN! gluten free and loving every healthy minute of it, --------Debbie

[kalo]

I'm curious where you heard that you can't have celiac without the gene. In all of my research I've read that once the intestines are damaged it's called celiac. Do you disagree? Just curious.

[gf4life]

Hi Debbie, I would also like to know where you got your information and "statistics". Not that I disagree with it, I just like to collect information and some of what you said, while I believe it is true, I have never seen in print anywhere. So if you know of a new source of info please point us in the right direction.

I am gluten intolerant, and while I apparently didn't show damage in my intestines, I do carry one of the genes for Celiac. I do react badly to gluten so I am gluten free. I am not doctor diagnosed, but have come to realise that it isn't necessary. It might be nice to have the "official" diagnosis, but I have managed to get most of my children's doctors to support the diet for them and all of their schools, church sunday schools, VBS leaders, etc. to assist keeping my kids gluten-free while they are away from home. I am able to bring gluten-free food into theme parks without a doctors note and so I don't know that it is necessary to have one. I might eventually come acrossed someone who demands a doctors note, but that has not happened yet.

I hope you are able to decide what is best for you. Going back on gluten is something that I do not recommend for anyone who is considering more tests. I did this and it just made me sicker. I won't do it again.

God bless,

Mariann

[LisaP]

I am the Celiac in my family and both my children had 2-3 times the normal IGG antibody level when a blood test was taken, although their IGA was normal. I took both children to a good pediatric GI doctor who sees alot of Celiac children and this is what she said to me:

Based on the blood test, an endoscopy on my son, and my observations that my children's bodies work slightly better when they eat gluten-free, she called their symptoms "gluten sensitive". The way she explained it was that unlike me, who has to be gluten-free, my children can have a "break" every once in awhile....like a Bday party or eating out.

Sure the chance is that someday they could develop celiac disease and as their mother, I am constantly on the look out for any symptoms. But according to our doctor, they could carry the gene and never develop the disease. The gene must be activated. From what I have read it takes three things to develop celiac disease:

1. The gene 2. Gluten in the diet 3. Some stress to set off the gene. So the way I see it, they are loaded guns that could go off.......but it is not predetermed that they have to. The doctor pretty much said the less gluten, the more we lower their odds of developing the disease.

Nothing like playing Russian roulette as a mom....even if my children are @ 98% gluten-free most of the time!!!!

I feel for you moms that have gluten-free children. It is truly a huge challenge. It's challenging enough trying to be a gluten-free adult!!!!!!!!!!!

[EmilyP2004]

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Coeliac disease - allergy, intolerance, or what?

Excerpt from Gluten-free Friends Fall 1996 (Vol. 2, No. 3) R. Jean Powell, editor Montana Celiac Society 1019 So. Bozeman Ave. #3 Bozeman, MT 59715.

celiac disease, also known as gluten enteropathy, is neither an allergy nor an intolerance. Gluten enteropathy causes damage to the lining in the small intestine, which interferes with the absorption of nutrients. Neither allergies nor intolerances lead to this sort of intestinal damage.

Open Original Shared Link

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[mpeel]

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.)

I think my family falls for both these "lies". My dad was diagnosed via blood tests at 3 y/o (50 years ago). He was put on a barley, rice and phenobarbital diet. Symptoms resolved and he was told he outgrew it. But, he has not been "normal" since. He goes four to five times a day - A DAY. He has had polyps removed. His mother has had colon cancer. My aunt and I have been diagnosed IBS. But, they claim there is no reason to be so concerned about my daughter getting gluten.

Also, I have found that once you change your mindset, living gluten-free is quite easy. I say that not being completely gluten-free myself yet. I have worked so hard to keep my girls gluten-free that I am only now (15 months later), focusing on me. At home we are totally gluten-free. It is at work that I slip. Mainly, it is money. A $.99 hamburger is much easier on the budget than the $5.50 salad. But, that is changing. I am going to be completely gluten-free by the end of September.

Michelle

mom to Beth, dairy intolerant, gluten-free since Aug 04

and Sam, dairy intolerant and gluten-free since June 03

[Guest barbara3675]

Just tried to go to enterolabs.com and it came back as there isn't any such thing. Please direct me. I did a search on google and ask.com.....nothing. Is my spelling right. I want to check into the testing. Barbara

[gf4life]

Barbara, you need to drop the "s" . Here is a link:

Open Original Shared Link

God bless,

Mariann

[kalo]

I think my family falls for both these "lies". My dad was diagnosed via blood tests at 3 y/o (50 years ago). He was put on a barley, rice and phenobarbital diet. Symptoms resolved and he was told he outgrew it. But, he has not been "normal" since. He goes four to five times a day - A DAY. He has had polyps removed. His mother has had colon cancer.

-----------------

No wonder your dad has problems. Doesn't barley contain gluten? Has he since gone strictly gluten-free? Sounds like he DIDN'T have a good doctor. Hope you can help him out.