Gluten Intolerant Vs. Celiac

[Guest cassidy]

I had a negative blood test and negative biopsy (5 weeks gluten free), so I may not have Celiac. I know I have a 100% positive result from the diet, so I know there is a reason that I can't eat gluten. After about 7 weeks gluten free I really feel great. No more gas, bloating, D, stomach pain after eating, brain fog, shakiness, irritability, headaches.

My question is that when people are talking about how long it takes for their symptoms to go away after going gluten free, does it take longer if you have Celiac versus a gluten intolerance? If you have Celiac, then you have intestinal damage that has to heal (right?). If you are intolerant, do you have any damage that has to heal, or do you just get better because you aren't constantly feeding your body something that it can't process?

I am wondering if there are other things that I didn't realize are symptoms, and may go away over time, if I still need to heal. Like Gerd, I know people have said it is related. My gerd hasn't gotten any better so I don't know if mine is related. I'm wondering if after a year gluten free if it will just go away (I know that no one can predict this)?

Also, do people who are intolerant have different symptoms than those that have Celiac. I know most people have the usual abdominal symptoms, but the other the not-so-common symptoms like teeth with enamel problems (I had that) and gerd?

None of this will change my dedication to my diet, but I'm curious.

[Rachel--24]

.

My question is that when people are talking about how long it takes for their symptoms to go away after going gluten free, does it take longer if you have Celiac versus a gluten intolerance? If you have Celiac, then you have intestinal damage that has to heal (right?). If you are intolerant, do you have any damage that has to heal, or do you just get better because you aren't constantly feeding your body something that it can't process?

You can have Celiac and not have much intestinal damage or none at all. This could be the case if you are only in the beginning stages of the disease....damage may not have occurred yet or it may have been at a minimun alllowing you to heal quickly. Gluten Intolerance can cause intestinal damage but will not flatten the villi like what is seen in Celiac. Gluten intolerance can cause leaky gut and still lead to malabsorption and other food intolerances.

I am wondering if there are other things that I didn't realize are symptoms, and may go away over time, if I still need to heal. Like Gerd, I know people have said it is related. My gerd hasn't gotten any better so I don't know if mine is related. I'm wondering if after a year gluten free if it will just go away (I know that no one can predict this)?

It may or may not go away. Only time will tell.

Also, do people who are intolerant have different symptoms than those that have Celiac. I know most people have the usual abdominal symptoms, but the other the not-so-common symptoms like teeth with enamel problems (I had that) and gerd?

Symptoms alone cannot determine whether you have Celiac or an intolerance. The symptoms can be caused by either. You can always get gene testing to determine if you carry a Celiac gene. This still wont tell you if you have Celiac or not but if you did carry a gene and are symptomatic when eating gluten it would be safe to assume that continuing to consume gluten will eventually lead to Celiac....if it hasnt already.

[tiredofdoctors]

I agree with Rachel. I'm gluten intolerant, but because I produce other antibodies against perkinje cells, it is affecting the my brain, eyes and the nerves in my hands & feet. I'm celiac negative, but it just affects me in a different way, so I'm WAY gluten-free.

[Felidae]

My question is that when people are talking about how long it takes for their symptoms to go away after going gluten free, does it take longer if you have Celiac versus a gluten intolerance? If you have Celiac, then you have intestinal damage that has to heal (right?). If you are intolerant, do you have any damage that has to heal, or do you just get better because you aren't constantly feeding your body something that it can't process?

Also, do people who are intolerant have different symptoms than those that have Celiac. I know most people have the usual abdominal symptoms, but the other the not-so-common symptoms like teeth with enamel problems (I had that) and gerd?

I had many of the same symptoms as you and they eventually went away on the gluten-free diet. I don't know if I have celiac, but I am definitely gluten intolerant. It took about four months before I had normal bms, even though I had great improvements in all of my symptoms immediately. At four months I had to eliminate all dairy also. And, at six or seven months I would say I was as normal as a person can be. So, it may take time, but it is so worth it.

I had severely receding gums for the past six years and I also had a bad dentist who said don't worry about it. My current and great dentist mentioned something about my enamel, I don't remember what it was. My gums seem to have slowed their recession. My hair was falling out, not anymore. I had migraines and anxiety (probably due to constant D), not anymore.

[Claire]

I will drop in here and add comments to follow Lynne's.

A new GI recently told me what I have been thinking (out loud a lot) that gluten intolerance and celiac are two sides of the same coin. You can have intestinal damage with gluten intolerance and there are diagnosed celiacs who have none. The doctor felt that one day these two genetic disorders will be considered the same thing. Goodness, even celiacs don't all have the same symptoms.

Like Lynne, I have the neurological problems. I do not have the Celiac genes. However this new GI specialist was quick to point out that there are other genes being identified with celiac that are not yet being tested - so all a negative test proves is that you don't have the genes that are currently available for testing.

I recently went through SCA testing - but only 9 out of 26 possibles can be tested, I was negative for the 9.

Note that the gluten intolerance seems to be more correlated to neurological disorder than does celiac - though that is not a complete exclusion of celiac in neuro problems.

I get the small intestine biopsy at the end of this month. Hopefully if there was any damage it will not have healed. That takes upwards to two years. Then of course, if I am gluten intolerant, there may be no damage and without it no doctor will diagnose Celiac. I will be in the same spot as I was with the SCA. Claire

[tiredofdoctors]

The up-side to your story, though, Claire, is that you are a reasonable, educated person, and you know your body VERY WELL. So, regardless of what "label" they are going to paste onto your chart, in your heart, you know that you're gluten intolerant, given the symptoms that you have. I have so much admiration for you -- for your knowledge, for your perserverance, and for your ability to continue to remain objective about a VERY emotional issue. You are remarkable. And that's really all you need to remember . . .

[Guest cassidy]

My mother has dh, so I'm wondering the odds of being gluten intolerant, versus celiac since I know that celiac is genetic, and I don't know if intolerance is. I don't know if that would be a weird coincidence or not, but I did have a negative blood test and biopsy. I guess I'm still on the right track with being gluten-free and I look forward to feeling even better over time.

[Claire]

My mother has dh, so I'm wondering the odds of being gluten intolerant, versus celiac since I know that celiac is genetic, and I don't know if intolerance is. I don't know if that would be a weird coincidence or not, but I did have a negative blood test and biopsy. I guess I'm still on the right track with being gluten-free and I look forward to feeling even better over time.

Gluten intolerance is also genetic. I wrote in another thread that my new GI specialist believes that gluten intolerance and celiac are just different manifistations of the same inherited disorder. Someday, hopefully, it will be defined that way. This subject is mentioned in Dangerous Grains. Claire

The up-side to your story, though, Claire, is that you are a reasonable, educated person, and you know your body VERY WELL. So, regardless of what "label" they are going to paste onto your chart, in your heart, you know that you're gluten intolerant, given the symptoms that you have. I have so much admiration for you -- for your knowledge, for your perserverance, and for your ability to continue to remain objective about a VERY emotional issue. You are remarkable. And that's really all you need to remember . . .

Thank you, cheer leader!

I really would like a diagnosis - especially if this is a genetic problem. I will never get one family member to be tested without a solid diagnosis. I probably won't get many to be tested anyway - even with one. I raised ostriches! Imagine that - me who wants to know every detail - has children who don't want to know anything unless it is happy news or the Steelers won. Claire