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Do People Who Have True Celiac - Not Gluten Intolerance

Guest cassidy

By Guest cassidy
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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Guest cassidy
Guest cassidy
Posted

I had my blood test and went gluten-free the same day. The results were negative, but by the time I got them I felt so much better that I didn't really care. I was also having an endoscopy for another reason and asked them to check for celiac. I got the endoscopy results and they didn't mention anything about the biopsies, and I didn't ask, so I assumed they were fine.

My question is, does anyone that has true celiac, not gluten intolerance or sensitivity, or any other type of problem with gluten, ever have a negative blood test if they have been eating gluten for years before getting the test? I know the test isn't always accurate because people who test negative may still have a HUGE problem with gluten, like I do, but does that automatically mean we have some other gluten problem than celiac if we have had our symptoms for years and been eating gluten for years?

I had symptoms for 29 years so I would think that if I was going to have intestinal damage that I would have had it by now. I realize this doesn't make any practical difference because there is not way I will ever willingly poison myself, but I'm just curious.

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Lisa Mentor
Lisa
Posted

Cassidy:

I really don't understand your question. I had a endoscopy exam and biopsy which indicated Celiac with blutting of the villi, and after a two month period of being gluten free, a NEW doctor wanted to see what a Celiac Panel looked like, and of course it was negative. So, therefore, he is doubtful. (who cares!)

I know that I did not answer your questions, but help me out, so I can try. (not you, I am sure it's me).

key Contributor
key
Posted

My GI doctor told me that people that have IBS, will be helped by a gluten free diet. Even without having celiac disease. I don't think that gluten is that good for people that don't have celiac disease. It is highly processed and unless you are eating spelt bread, then it is pretty much not good for you.

I think in children, tests can definitely be negative and they can have celiac disease. My son's tests were negative at 14 months, but his Igg was positive. He never had the biopsy, so I don't know about that.

I know like the person that posted before me, if you are gluten free, then it is highly likely that your tests would be inaccurate. The goal is to have them return to normal.

I am not sure I am giving you an answer and I think there may be some stuff doctors don't know yet about testing. If you feel better, then stick with it.

Monica

Nancym Enthusiast
Nancym
Posted

Gluten can attack the skin or brain and often those people have no detectable blood results and no villious atrophy.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
My GI doctor told me that people that have IBS, will be helped by a gluten free diet. Even without having celiac disease.

IBS is not a disease, it is a syndrome--a collection of symptoms. Those symptoms are pretty much identical to those of--you guessed it--celiac.

Guest cassidy
Guest cassidy
Posted
Cassidy:

I really don't understand your question. I had a endoscopy exam and biopsy which indicated Celiac with blutting of the villi, and after a two month period of being gluten free, a NEW doctor wanted to see what a Celiac Panel looked like, and of course it was negative. So, therefore, he is doubtful. (who cares!)

I know that I did not answer your questions, but help me out, so I can try. (not you, I am sure it's me).

Let me try to re-phrase. Let's say I've been eating gluten my entire life and I have had celiac-type symptoms for years. I take the blood test and it is negative. Is there anyway that I still have celiac? I realize that people who are gluten intolerant/sensitive/or whatever you want to call it still have huge problems with gluten, but don't have positive blood tests because they don't have classic celiac damage.

So, I guess the question is can a celiac eat gluten for years and years and have a negative blood test while they are still on a gluten filled diet?

Jestgar Rising Star
Jestgar
Posted
So, I guess the question is can a celiac eat gluten for years and years and have a negative blood test while they are still on a gluten filled diet?

Cassidy,

there isn't really a clear answer to this. Although a person may not have visible damage on the upper portion of their intestine, there's no reasonable way to check farther into the intestine. It's like making a conclusion about the ending of a book when you're 1/3 into it. A lot of times you can figure out the ending, but not always.

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nikki-uk Enthusiast
nikki-uk
Posted
Let me try to re-phrase. Let's say I've been eating gluten my entire life and I have had celiac-type symptoms for years. I take the blood test and it is negative. Is there anyway that I still have celiac? I realize that people who are gluten intolerant/sensitive/or whatever you want to call it still have huge problems with gluten, but don't have positive blood tests because they don't have classic celiac damage.

So, I guess the question is can a celiac eat gluten for years and years and have a negative blood test while they are still on a gluten filled diet?

It is possible.

My hubby had negative bloods (at that point he'd never been gluten-free -we'd never even heard of celiac disease..total gluten ignorance!) but went on a few days later to have biopsies which showed villous atrophy.

Ursa Major Collaborator
Ursa Major
Posted

Cassidy, yes, it is possible to have a negative blood test and to have celiac disease. Those blood tests aren't that reliable, and can yield false negatives, as can the biopsies.

But if you feel better being gluten-free, it really isn't that important if it is celiac disease or gluten intolerance, is it? The treatment is exactly the same, which is the gluten-free diet.

Nancym Enthusiast
Nancym
Posted

I just did a google search on "villous atrophy and negative blood" and it turned up quite a few things.

Like this: Open Original Shared Link

It could be something other than Celiac, but it can't rule out celiac.

ravenwoodglass Mentor
ravenwoodglass
Posted
Let me try to re-phrase. Let's say I've been eating gluten my entire life and I have had celiac-type symptoms for years. I take the blood test and it is negative. Is there anyway that I still have celiac? I realize that people who are gluten intolerant/sensitive/or whatever you want to call it still have huge problems with gluten, but don't have positive blood tests because they don't have classic celiac damage.

So, I guess the question is can a celiac eat gluten for years and years and have a negative blood test while they are still on a gluten filled diet?

Yes, I am an example of one of those. I was a full blown celiac close to death when I was diagnosed. I had blood tests for celiac many times at Strong, one of the best hospitals in NY. I wish they had told me about what it was so I could have tried the diet before I got so bad I had given up all hope and hoped for death to end the pain. All they told me was to be glad I didn't have it because I wouldn't be able to eat anything. They never told me what to avoid though. I was a neuro predominent celiac for over 30 years and suffered escalating GI troubles for another 15 on top of that before diagnosis. I had not had a night without a 2 to 3 hour bout of gut wrenching pain and D for the last 5. Thank God for a savvy PT and a wonderful elderly allergist, I know I would not be here without them.

aikiducky Apprentice
aikiducky
Posted

Yes what others said, it's possible to have even vili completely gone and still have negative bloods.

Pauliina

Guest cassidy
Guest cassidy
Posted
Cassidy, yes, it is possible to have a negative blood test and to have celiac disease. Those blood tests aren't that reliable, and can yield false negatives, as can the biopsies.

But if you feel better being gluten-free, it really isn't that important if it is celiac disease or gluten intolerance, is it? The treatment is exactly the same, which is the gluten-free diet.

My concern at this point is just because I'm pregnant. I talked to a pediatric gi doctor the other day that specializes in celiac and she made it sound like if you are ONLY gluten intolerant it isn't a big deal as far as other health complications. She even suggested that you could cheat on the diet if you wanted to and the only problem would be your immediate symptoms. I have had many other serious complications from gluten, yet my blood work was negative. I am super sensitive and would never cheat because I get very, very sick and it wouldn't possibly be worth it. I think I'm just realizing that this is yet another doctor who doesn't know everything about gluten. It is frustrating that a leading researcher is still giving bad advice. I don't want my child to suffer like I did and I am not finding any good information about how to lessen those chances or what I really could be passing on to him.

I just did a google search on "villous atrophy and negative blood" and it turned up quite a few things.

Like this: Open Original Shared Link

It could be something other than Celiac, but it can't rule out celiac.

That article is crazy - the endoscopies of the before. I guess it seems like we haven't made many medical advances until you realize how simply medicine was in the past. Hopefully, 20 years from now we will know much more than we do now.

Ursa Major Collaborator
Ursa Major
Posted

Cassidy, the very best thing you can do for your child and for yourself to stay gluten-free. The doctor is utterly wrong in suggesting that it's okay to cheat if you're 'only' gluten sensitive. You will be doing damage past just immediate symptoms. Of course, you seem to know that already.

jaten Enthusiast
jaten
Posted
Gluten can attack the skin or brain and often those people have no detectable blood results and no villious atrophy.

This is the first I've seen of this. Can you point me to the research for more reading?

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