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Kaycee

Celiac V Gluten Intolerance

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I have been diagnosed with celiac, but I was more expecting to be diagnosed as gluten intolerant.

The dr gave me a blank look when I asked if there was a difference. So it has got me to thinking are they both one and the same thing?

Can somebody please tell me if this is the case.

Thank you.

Cathy

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Hi Cathy, how were you diagnosed, with blood work and biopsy? Some doctors want that distinction removed, as they say that the only difference is more damage has been done when you have full blown celiac disease. But with gluten intolerance you'll eventually get to that stage unless going gluten-free. So, the difference is just in degree and therefore no real difference.

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Well, the end result is the same, a gluten-free diet. Gluten intolerant doesn't mean that you will progress to Celiac (villi damage), but it doesn't mean that you won't either. Were you diagnosed by biopsy? If so, that is the gold standard for diagnosing Celiac for now. There are lots of people who have been diagnosed by positive bloodwork and positve dietary response too.

I know that I am gluten intolerant. Do I have full blown Celiac? I don't know b/c I had already gone gluten-free by the time I saw the gastro and couldn't do the biopsy gluten-free. However, my dietary response was amazing and I can't see eating gluten again to get a biopsy done that may not be conclusive. The biopsy can rule in Celiac, but not rule it out.

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In theory a gluten intollerant person may not get the Vilil damage that shows conclusive Celiac with current standards of biopsy testing. BUT that doesn't mean that person won't have other health and autoimmune problems! That is why I feel so strongly that those who get an "all clear" from their biopsy should still try a gluten free diet after the fact if they are still sick. It is the only way to truly know if gluten is the problem. The problem there, is that many people are not strict and you have to be strict, of course! (no gluten, no cross contamination).

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I was diagnosed by a blood test, on Valentines day this year. I am still waiting for a biopsy, but the Dr said it could take a while to get that done. I am not eating gluten, Doctors request, so that might not show up anything in the biopsy, he is quite prepared for that, but he would like to know there is no other damage done.

I have had a couple more blood tests, my levels are going down, slowly. It is so frustrating as I have been trying so hard. It is the hidden gluten that gets me, so I am going totally next to nothing processed. It works. To start with I thought this is easy, but it is harder than it sounds.

But I feel I have had celiac for a while, I am nearly 49, as in next week, and I have had symtoms for as long as I can remember, maybe not as severe as a lot of peoples, but they have been there for years. I thought it was normal well normal for me anyway, as my mum had bowel problems similar to mine. She thinks she is fine now and refuses to get blood tests done, (even her doctor is not too keen on doing them for her) even though she told me to find out what was wrong, meaning she thought that was her problem too. But I just got so sick of it all, and had realised it was something I was eating a lot of giving me the problems, such as diahrea, stomach cramps, low iron levels etc.

Yes being gluten free makes a difference, I thought I would feel a lot better, but not really thinking I was ill, that has not happened, feel pretty much the same. Still walk the dog, walk with a friend and do 30 hours at work a week, and am just as worn out at the end of the week. But I don't think I was too bad worn out to start with, I had been worse years ago with little children.

Still must get up and go to work, I have talked alot.

Hey, you guys are so neat here on this forum. Once I felt alone, now I know I am not and you can all understand the finickity eater that I am now. Hope you can understand all my slang and sayings as you probably can tell I am not American, but come from good old New Zealand.

Cathy

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Cathy, I didn't figure it out until last year, when I was 52. And if I hadn't gone into full-blown celiac then (not confirmed, but my doctors agree), I would likely have lived with the fibromyalgia and IBS diagnosis, and taking codeine 24 hours a day for the rest of my life.

I am not feeling all that great yet, but yes, I am soooooooooo much better! When a lot of damage is done over so many years, it can take years (definitely many months) to get better, and when diagnosed late in life, it is fairly common never to get completely better. But even 70% better is a huge improvement, and I am sticking with my crazy diet (a lot more than just cutting out gluten).

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I was diagnosed by a blood test, on Valentines day this year. I am still waiting for a biopsy, but the Dr said it could take a while to get that done. I am not eating gluten, Doctors request, so that might not show up anything in the biopsy, he is quite prepared for that, but he would like to know there is no other damage done.

I have had a couple more blood tests, my levels are going down, slowly. It is so frustrating as I have been trying so hard. It is the hidden gluten that gets me, so I am going totally next to nothing processed. It works. To start with I thought this is easy, but it is harder than it sounds.

But I feel I have had celiac for a while, I am nearly 49, as in next week, and I have had symtoms for as long as I can remember, maybe not as severe as a lot of peoples, but they have been there for years. I thought it was normal well normal for me anyway, as my mum had bowel problems similar to mine. She thinks she is fine now and refuses to get blood tests done, (even her doctor is not too keen on doing them for her) even though she told me to find out what was wrong, meaning she thought that was her problem too. But I just got so sick of it all, and had realised it was something I was eating a lot of giving me the problems, such as diahrea, stomach cramps, low iron levels etc.

Yes being gluten free makes a difference, I thought I would feel a lot better, but not really thinking I was ill, that has not happened, feel pretty much the same. Still walk the dog, walk with a friend and do 30 hours at work a week, and am just as worn out at the end of the week. But I don't think I was too bad worn out to start with, I had been worse years ago with little children.

Still must get up and go to work, I have talked alot.

Hey, you guys are so neat here on this forum. Once I felt alone, now I know I am not and you can all understand the finickity eater that I am now. Hope you can understand all my slang and sayings as you probably can tell I am not American, but come from good old New Zealand.

Cathy

Hi Cathy, I was a late diagnosis as well. It does take a while to recover. While I felt great just having the tummy troubles gone it was many, many more months for me to be pain free and energetic. One thing that helped a lot was sublingual B12 tablets, gluten free of course. You can just add them to the daily gluten-free multiple you already take. I envy you being in New Zealand. Any pictures I've seen and a couple of TV shows and movies have convinced me I want to see it in person some day.

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Yes Ursula, it is so much more than cutting out the gluten. It is cutting out all those additives as well. That struck me in the first few weeks, that I felt better without the additives and preservatives. But it was hard to change the diet after all those years of eating what I want whenever I want. Needless to say, I am a bit overweight, but this diet does agree with me, as I have lost the appetite for overeating. I just eat what I feel I want, probably I eat what I should have as in healthy, and the hunger has gone, but the weight is still there. Not to worry, it is stable. (I did lose 2 stone the previous year, and I was dreading putting it back on)

With this diet I feel more in control, if there is too much fat in the diet, it would be because I put it there, not because the manufacturer did.

And yes New Zealand is beautiful, but I live in the north, and I think the wonderful scenery is further south, with the snow and mountains, but then the beaches are wonderful up here. Just need to lose a bit more weight before summer. And it only takes just over an hour to drive from one side of my country to other from where we live.

Cathy

Cathy

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