Remission And Return Of Celiac Disease?

[blondeambition]

Hi everyone,

I was wondering if anyone would care to comment on this...I was diagnosed as having CS about 10 years ago. I was on a very strict gluten-free diet for a few years...I had a few times I fell off the wagon.LOL When I actually stuck to the diet, after a couple of years, I gradually intruduced gluten back into my diet...small amounts, low-gluten foods. After a while, I was able to eat anything I wanted and had no symptoms.

Several years have gone by like that, but I'm finding my CS is returning(I think). I'm constantly nauseaus, and have the usual symptoms pretty much all the time. I had chalked it up to stress...recent bitter divorce and going to work for an evil-troll of a boss. But, as my stress is being worked through, I'm finding I'm still having the CS symptoms.

I'm back on the gluten free diet and am starting to feel much better, but it's only been a couple of days.

I'm wondering if maybe all the stress I've been under recently has contributed to my CS returning??? And maybe when things settle down, and I've given my body a break from gluten for a while, I'll be able to return to eating "normal" foods again???

Has anyone else experienced anything like this, where their celiac sprue goes into remission, only to come back sometime later?

[mommida]

It was thought that children "outgrew" Celiac; but we know now that once a Celiac, ALWAYS a Celiac. Some people do say that gastrointestinal reactions have varied, to the point they don't notice any symptoms. A biopsy of the intestine proves that damage is being done with or without symptoms.

If the medical professionals would better educate themselves, Celiac patients would know how serious it is to be on a gluten free diet for life.

L.

[plantime]

Yep, once a celiac, always a celiac. Your disease did not go away then return. You had to build up enough damage to notice it again. The gluten-free diet is for life.

[tarnalberry]

yep, celiac disease is not one of the autoimmune diseases that goes into remission. what happened is that you no longer had obvious GI symptoms. damage was still being done to your intestines, but you were asymptomatic (this happens to many people and is one of the reasons the disease is so underdiagnosed). the lack of symptoms while damage is occuring does not lower your risks of nutritional deficiencies, neurologic manifestations, digestive cancers, or the other outcomes of untreated celiac, however.

defintely get back to sticking with the gluten-free diet. you'll find a much wider range of alternatives available to you these days.

[CarlaB]

It didn't go into remission, you just didn't have outward symptoms. If you go back to eating gluten again after some time off it, you will feel fine again until the damage builds up again to the point that you have symptoms again. You will put yourself at greater risk of cancer and other complications like malnutrition.

I was recently diagnosed at 43. If I look over my life, I can see the times that I had more serious symptoms of the disease, and it was related to more stress in my life. So, I think stress can make the digestive syptoms more severe, but the damage is done whether you feel bad or not. Also, as the years went by, instead of having digestive syptoms only, I also developed low thyroid, borderline anemia, fatigue, depression, etc. Eventually, the digestive symptoms were chronic, too. By that time I was pretty seriously ill.

[lindalee]

It didn't go into remission, you just didn't have outward symptoms. If you go back to eating gluten again after some time off it, you will feel fine again until the damage builds up again to the point that you have symptoms again. You will put yourself at greater risk of cancer and other complications like malnutrition.

I was recently diagnosed at 43. If I look over my life, I can see the times that I had more serious symptoms of the disease, and it was related to more stress in my life. So, I think stress can make the digestive syptoms more severe, but the damage is done whether you feel bad or not. Also, as the years went by, instead of having digestive syptoms only, I also developed low thyroid, borderline anemia, fatigue, depression, etc. Eventually, the digestive symptoms were chronic, too. By that time I was pretty seriously ill.

An extreme trauma event brought on mine. I was diagnosed celiac as a baby and thought I outgrew it. I know I need to get checked out for damage but I am scared to go. I haven't had good dr. experiences. John Hopkins told my parents to keep me on complete bed rest and no visitors for 3 months and the diet for 2years. It just dawned on me in Feb. my poor health, etc. was my celiac disease. I have been helped so much about the disease from this fantastic group. LindaLee

[blondeambition]

Thanks everyone for you replies. I know you're all right...I just had hoped that mine was a mild case that might go away if I laid off the gluten for a while. When I was first diagnosed, I had the blood test that showed I was reacting to gluten...I've been afraid to go for the biopsy...I guess I still don't want to accept that I have this condition...pretty stupid, huh. Life's hard enough without this thrown in too, and I've felt like I've dealt with more than my fair share of problems, so this was just something I simply didn't want to have. I think eventually I'll have the biopsy done, just for my own knowledge...to kind of make it real to me that I really do have this and it isn't going away.

Hugs,

Denise

[CarlaB]

Thanks everyone for you replies. I know you're all right...I just had hoped that mine was a mild case that might go away if I laid off the gluten for a while. When I was first diagnosed, I had the blood test that showed I was reacting to gluten...I've been afraid to go for the biopsy...I guess I still don't want to accept that I have this condition...pretty stupid, huh. Life's hard enough without this thrown in too, and I've felt like I've dealt with more than my fair share of problems, so this was just something I simply didn't want to have. I think eventually I'll have the biopsy done, just for my own knowledge...to kind of make it real to me that I really do have this and it isn't going away.

Hugs,

Denise

I struggled with denial as well, especially because my biopsy came back normal. I had not eaten a significant amount of wheat for three years, which probably accounts for not finding damage. The biopsy can only prove you do have it, it cannot prove you don't have it. If you want the biopsy done, you need to do it while you're still eating gluten. The blood test and dietary response really shows you have it. All the biopsy can do is show how much damage has been done.

Celiac is one of those things you either have or don't have ... like being pregnant ... you can't have a "mild case" of it ... mild would only mean there hasn't been much damage done yet.

[lindalee]

I struggled with denial as well, especially because my biopsy came back normal. I had not eaten a significant amount of wheat for three years, which probably accounts for not finding damage. The biopsy can only prove you do have it, it cannot prove you don't have it. If you want the biopsy done, you need to do it while you're still eating gluten. The blood test and dietary response really shows you have it. All the biopsy can do is show how much damage has been done.

Celiac is one of those things you either have or don't have ... like being pregnant ... you can't have a "mild case" of it ... mild would only mean there hasn't been much damage done yet.

Carla B, are there symptoms of damage? I was diagnoised in 1952 with the disease - 2 years on the diet and started going gluten-free in Feb this year. LindaLee

[CarlaB]

Carla B, are there symptoms of damage? I was diagnoised in 1952 with the disease - 2 years on the diet and started going gluten-free in Feb this year. LindaLee

I really don't know. They found no damage in me, but at the time I had all kinds of symptoms -- low thyroid, borderline anemia off and on for years, fatigue, bruising, diarrhea, weight loss while eating constantly-- things that showed malabsorption. So I don't think you can tell how much damage is done by your symptoms. I've only been gluten-free for 5 months, so I'll pass that question on to some veterans around here.

[KaitiUSA]

All the symptoms of celiac can be a sign of damage. To really know if you have the damage you have to get checked. However, a biopsy is only good for seeing how much damage is done. A biopsy can rule celiac in but can't rule it out. Weight loss and diarrhea are somewhat considered the classic signs of damage but some people with extreme damage show no symptoms and there are so many symptoms with celiac so its hard to tell.

[CarlaB]

All the symptoms of celiac can be a sign of damage. To really know if you have the damage you have to get checked. However, a biopsy is only good for seeing how much damage is done. A biopsy can rule celiac in but can't rule it out. Weight loss and diarrhea are somewhat considered the classic signs of damage but some people with extreme damage show no symptoms and there are so many symptoms with celiac so its hard to tell.

Well said. I had the classic signs, and they still didn't find damage!!

[lindalee]

Do you mean damage to the vili? LL

[Nancym]

Life's hard enough without this thrown in too, and I've felt like I've dealt with more than my fair share of problems, so this was just something I simply didn't want to have. I think eventually I'll have the biopsy done, just for my own knowledge...to kind of make it real to me that I really do have this and it isn't going away.

Hugs,

Denise

Yeah, but think about how much harder life will get if you get lymphoma or colon cancer or one of the 200 other diseases associated with gluten intolerance. :\

[CarlaB]

Do you mean damage to the vili? LL

Yes. The first time I went to the GI, he was certain by my symptoms that it was celiac and really wasn't even considering something else. He did a colonoscopy with the endoscopy because, he said, sometimes there can be other autoimmune diseases in the large colon that go along with celiac (I don't remember what he said those were). Then, when he didn't find damage (I had eaten very little wheat for three years, had been gluten free for a few months, then did a six week gluten challenge, which I got very ill from), he was going to start testing other things ... I told him I felt fine as long as I stayed away from gluten, but he didn't consider celiac a possibility -- I guess he thought his tests were infallible. After almost three months off gluten, I got tested by Enterolab. I was barely within range on absorption (I am certain I was not absorbing before, my digestive symptoms were almost gone by this point), and had very high numbers on all the other tests. I mentioned the blisters I get on my scalp, but he wasn't interested in those even though they could be dh, which would be a celiac diagnosis. I got glutened Sunday and actually have an outbreak of them right now, but I can't decide whether to bother with a biopsy of them.

This is why I am not a fan of the intestinal biopsies. I think they can show what level of damage you have if they take a biopsy from a place you are damaged and if you've been eating gluten.

[Carriefaith]

Celiac disease is a life long disease.