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It's Not Celiac

Chrisser

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Chrisser Explorer
Chrisser
Posted

I got the genetic test done...came back negative. I started introducing gluten back into my diet yesterday. I had a sandwich from Panera and then had a small amount of bread last night with my beef stew. A couple of hours I had the sandwich I got some stomach cramps. Today I've been in the bathroom since 7am. No diarrhea, but stomach cramps and going a lot. If I eat, I feel sick and end up in the bathroom. If I don't eat I get really dizzy (which is normal these days if I go too long without eating or don't eat enough).

Could all this be from not eating gluten the past 3 months and then starting again? Or could it be PMS? I usually get a day or two when I feel gross and my stomach is on the fritz, but it's never been this bad.

I'm getting an upper GI done tomorrow, too, and can't eat (or even drink water) after midnight. This isn't helping...I needed as much fuel in my body as possible, but that's not happening.

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CarlaB Enthusiast
CarlaB
Posted

You could be non-celiac gluten intolerant ... I am. I do not have the celiac genes, but get sick for about 8 days if I eat gluten.

AndreaB Contributor
AndreaB
Posted

You could have gluten intolerant genes. That is more than likely the case. If you want to know what genes you have get retested through enterolab.

It sounds like you are gluten intolerant and still need to be gluten free.

Chrisser Explorer
Chrisser
Posted
  • Author
You could be non-celiac gluten intolerant ... I am. I do not have the celiac genes, but get sick for about 8 days if I eat gluten.

I was looking at your signature...I saw that your IgA and TTG came back high? Was that in addition to a high IgG? Does that show the gluten intolerance? My IgG in my initial testing came back high, but my IgA and TTG were normal.

CarlaB Enthusiast
CarlaB
Posted
I was looking at your signature...I saw that your IgA and TTG came back high? Was that in addition to a high IgG? Does that show the gluten intolerance? My IgG in my initial testing came back high, but my IgA and TTG were normal.

My testing was done through Enterolab. My blood test was negative, but the doc only tested the IgA. For the Enterolab test I was already off gluten for three months.

kbtoyssni Contributor
kbtoyssni
Posted

I've seen a lot of references on this site lately that you don't have any of the KNOWN celiac genes. There may be more celiac genes out there that we just don't know about yet. If I were you, I'd stop eating gluten again. Your body clearly doesn't like it.

Guest cassidy
Guest cassidy
Posted

You said you were off gluten for 3 months then; did you feel better being off gluten? If so, then regardless of what the issue is - intolerance or a gene we don't know about yet, you shouldn't eat it.

I posted something wondering about if I think I'm intolerant to tomatoes do I really have to stop eating them. People wrote back and said if you eat something and it makes you feel bad, then you shouldn't eat it. I realize it is obvious, but not the answer we are looking for.

If you feel better off gluten and get sick when you eat it, then you can't eat it. It would be nice if we all knew exactly why we can't have it but I just don't think the medical community knows everything yet.

I don't know much about the blood tests - mine was negative - but I thought if any of it was high then you had a problem with gluten. Someone will come around that knows more about it.

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bklynceliac Apprentice
bklynceliac
Posted

I was told by Dr. Lee from the Columbia Celiac Center that you will, or can, get sick when returning to gluten after being gluten-free for a long period of time. She said it's very important to ease back into it slowly, as it's hard to digest even for people who tolerate it fine, and your body needs to relearn. So it could be that, or it could be that you're actually intolerant. I will say, according to "established" or "traditional" medicine that if you don't have the genes then you should be able to eat gluten just fine.

Chrisser Explorer
Chrisser
Posted
  • Author
You said you were off gluten for 3 months then; did you feel better being off gluten? If so, then regardless of what the issue is - intolerance or a gene we don't know about yet, you shouldn't eat it.

I posted something wondering about if I think I'm intolerant to tomatoes do I really have to stop eating them. People wrote back and said if you eat something and it makes you feel bad, then you shouldn't eat it. I realize it is obvious, but not the answer we are looking for.

If you feel better off gluten and get sick when you eat it, then you can't eat it. It would be nice if we all knew exactly why we can't have it but I just don't think the medical community knows everything yet.

I don't know much about the blood tests - mine was negative - but I thought if any of it was high then you had a problem with gluten. Someone will come around that knows more about it.

Well, I feel better in some ways and horrible in others. My digestive system is much happier off gluten, but my body also went haywire in other ways. I've been eating like crazy, have gained almost 20 lbs, my blood sugar is low and rollercoastering, I have no energy, my sleep is erratic, I wake up in the middle of the night to eat, I don't feel normal hunger or stomach upset, etc.

I've read more than once that you become more sensitive to gluten the longer you're off it, so I am wondering if I need to just reintroduce it slowly. But I also thought I was...one sandwich and a small piece of bread with a meal isn't much at all. So I really don't know what's going on, and sadly Thanksgiving is just days away...so I might not be able to enjoy it as much as I thought I would. I'm going to see how I feel tomorrow and maybe try something again.

Guest nini
Guest nini
Posted
I was told by Dr. Lee from the Columbia Celiac Center that you will, or can, get sick when returning to gluten after being gluten-free for a long period of time. She said it's very important to ease back into it slowly, as it's hard to digest even for people who tolerate it fine, and your body needs to relearn. So it could be that, or it could be that you're actually intolerant. I will say, according to "established" or "traditional" medicine that if you don't have the genes then you should be able to eat gluten just fine.

your body has to relearn to tolerate poison??? what happens is the body gives up trying to warn you if you continue to not listen to it.

Chrisser Explorer
Chrisser
Posted
  • Author
your body has to relearn to tolerate poison??? what happens is the body gives up trying to warn you if you continue to not listen to it.

Granted it's a little different, but think about alcohol tolerance...the longer you go without drinking alcohol the less tolerant you are and it takes less to get drunk. I kind of relate that to gluten.

I don't know for sure it was the gluten, but it really seems to be the only thing I did differently yesterday...aside from the yogurt-covered raisins. Like I said in my original post, it could be PMS symptoms. I think I'm just afraid that it's gluten because it'd be yet another emotional letdown after receiving the results of the genetic test.

lonewolf Collaborator
lonewolf
Posted

I don't have the genes either, but am gluten intolerant. Please think long and hard about going back to gluten if you're having symptoms when you reintroduce it.

Chrisser Explorer
Chrisser
Posted
  • Author
I don't have the genes either, but am gluten intolerant. Please think long and hard about going back to gluten if you're having symptoms when you reintroduce it.

Oh believe me, if it's is definitely the gluten I'm not going to continue eating it. But I do have to remain on it for 4-6 weeks because my doctor wants to do an endoscopy if I'm still feeling sick.

CarlaB Enthusiast
CarlaB
Posted
Oh believe me, if it's is definitely the gluten I'm not going to continue eating it. But I do have to remain on it for 4-6 weeks because my doctor wants to do an endoscopy if I'm still feeling sick.

I don't know why docs think six weeks is long enough ... it wasn't long enough for me! Dr. Greene says four months, the equivalent of four slices of bread a day.

I don't blame you for wanting an endoscopy, but I'd research on your own what the celiac experts recommend for a gluten challenge as it doesn't seem that all docs are up to date on it.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
I was told by Dr. Lee from the Columbia Celiac Center that you will, or can, get sick when returning to gluten after being gluten-free for a long period of time. She said it's very important to ease back into it slowly, as it's hard to digest even for people who tolerate it fine, and your body needs to relearn. So it could be that, or it could be that you're actually intolerant. I will say, according to "established" or "traditional" medicine that if you don't have the genes then you should be able to eat gluten just fine.

I know that this is the standard thought amongst the MD's--that it is hard on the body to reintroduce. But in my own experience, it just doesn't add up. I am one of those who had nearly silent digestive reactions--but other autoimmune problems. When I cheated (twice :o ), I didn't react at all. And that was several months into the gluten-free diet.

I suspect that if your villi have been damaged enough, you will react to reintroduction of gluten no matter whether you have "the genes" (the known ones) or not.. Those of us whose villi have likely not been damaged before going gluten-free might not have overt reactions--but we then risk our immune systems going haywire and attacking our skin, our thyroid, our joints, our brains, etc.

Not worth it to me (to eat gluten).

bklynceliac Apprentice
bklynceliac
Posted
your body has to relearn to tolerate poison??? what happens is the body gives up trying to warn you if you continue to not listen to it.

sorry. just to clarify - no, she said even a healthy, non-celiac body has to relearn digesting gluten if it's been off it for a while. Obviously, a celiac or gluten-intolerant system won't get used it no matter what.

Guest cassidy
Guest cassidy
Posted
Well, I feel better in some ways and horrible in others. My digestive system is much happier off gluten, but my body also went haywire in other ways.

That sounds like an answer to me. If you didn't have a problem with gluten then your digestive system would not get better being off of it.

It seems like once your body if off gluten you may find out you have other issues. I found out I had candida overgrowth, an amoeba, bad bacteria and almost no good bacteria. So, gluten really helped me but I didn't feel 100%. I have also figured out that I can't have nightshades, chocolate or citrus. I'm sure I had all those problems before going gluten-free but they were just noticable when I took the gluten out of my diet and the gluten effects were gone.

As far as the stomach issues, hunger and blood sugar, I have had problems with all that as well. I get gastritis if I eat these other foods I can't have and my stomach hurts with everything. I couldn't tell if it was hungry so I kept eating thinking that would help and I ended up gaining weight and still being in pain.

A lot of people have blood sugar issues - I get them when I get glutened. I have also been waking up in the middle of the night to eat - but I'm pregnant. I just wouldn't rule out that idea that your body is adjusting to having the gluten gone and other things are more noticable because you aren't constantly glutened.

You can try a low glycemic diet which should help with the hunger and blood sugar. I'm sure it feels like you are trading one problem for another but I don't see how your digestive issues would clear up if gluten wasn't an issue.

Also, if you don't have the genes for celiac then wouldn't the biopsy be negative? I thought you would only have a positive biopsy if you have celiac but the biopsy wouldn't show anything if you are gluten intolerant. If that is the case then the biopsy isn't going to be helpful at all.

Guest nini
Guest nini
Posted
Granted it's a little different, but think about alcohol tolerance...the longer you go without drinking alcohol the less tolerant you are and it takes less to get drunk. I kind of relate that to gluten.

well, a lot of people think that alcohol is a poison too and shouldn't be deliberately put into the body...

I think of gluten intolerance like being "the canary in a coalmine" the more sensitive of us letting the rest of the world know that something isn't right...

oh and 6 weeks is definitely NOT enough time to reintroduce gluten before a endoscopy, any Dr. that thinks it is, needs to update their education...

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