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Question- The Difference Between Gluten Intolerance And Celiac Disease?
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Ok, after going 5 months gluten free and having sucessful results, my doctor says I'm gluten intolerant. However, he doesn't want me to do the Celiac testing because he says I would have to eat gluten, and he told me he doesn't think I have Celiac because we would have found out before now. He told me I have IBS and that a food intolerance may be linked to that, and that my gluten intolerance should likely go away on its own it a few years. I asked him the symptoms of Celiac disease and he said, people with Celiac are short and skinny. I kind of looked at him weird because I am about 4' 11'' and weigh a whopping 100 pounds. So I figured I would just call myself gluten intolerant because I may not have Celiac disease, however, I think its entirely possible that I do. Here are my questions:

1.) Does gluten intolerance cause intestinal damage as well as Celiac disease?

2.) Do people with gluten intolerance have the same symptoms as Celiac disease, but just not the long term risk?

3.) Does gluten intolerance actually go away?

I want to understand this as much as possible.

I feel like my body has been healing since I stopped eating gluten: I am no longer constipated, my allergies are better, I have more energy, my anxiety is better, I don't have heartburn anymore, and well, I can eat again! I just want to make sure this matches with just having gluten intolerance.

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I just got my bloodwork back and the endo doc said I do not have Celiac's. My holistic doc said I had a wheat allergy/intolerance. My endo doc had me eat wheat for 3 weeks. This is day 10 since I stopped eating wheat again and am finally beginning to feel better (today, so far, has been my best day in a month.)

From my short time here at this site, I can say that people's reactions seem to differ wildly. There are some who share traits while others aspects are completely different. For me, I would get these body buzz/rushes and get some pretty wild anxiety issues.

My holistic doc said it could take me a couple weeks or so to start feeling right again (since ending my wheat consumption). He told me to wait 4 or 5 months before re-introducing. He said when I finally decided to reintroduce (I''m going to wait 6 months) to have a bagel or slice a pizza, wait a week to see how you feel. Then wait a few more weeks and try having wheat twice in a week, then wait again and see how you feel. Essentially slowly reintroduce and monitor.

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I cannot answer all of your questions but I will say this...

Your doctor's assessment of symptoms of celiacs is dated thinking. By far the most frequent symptom is anemia. Many celiacs (myself included) have virtually no symptoms. I was diagnosed thanks to a perceptive doctor who saw the word celiac in my father's autopsy report.

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"gluten intolerance should likely go away on its own it a few years", your doctor says..... Wrong!

I would suggest finding a new doctor. He's wrong. It does not go away on its own. You could possibly have Celiac. I am not sure if intolerance causes intestinal damage, but it sure does cause many of the exact same symptoms.

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gluten intolerance should likely go away on its own it a few years

I disagree with this statement.

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Ok, after going 5 months gluten free and having sucessful results, my doctor says I'm gluten intolerant. However, he doesn't want me to do the Celiac testing because he says I would have to eat gluten, and he told me he doesn't think I have Celiac because we would have found out before now. He told me I have IBS and that a food intolerance may be linked to that, and that my gluten intolerance should likely go away on its own it a few years. I asked him the symptoms of Celiac disease and he said, people with Celiac are short and skinny. I kind of looked at him weird because I am about 4' 11'' and weigh a whopping 100 pounds. So I figured I would just call myself gluten intolerant because I may not have Celiac disease, however, I think its entirely possible that I do. Here are my questions:

1.) Does gluten intolerance cause intestinal damage as well as Celiac disease?

2.) Do people with gluten intolerance have the same symptoms as Celiac disease, but just not the long term risk?

3.) Does gluten intolerance actually go away?

I want to understand this as much as possible.

I feel like my body has been healing since I stopped eating gluten: I am no longer constipated, my allergies are better, I have more energy, my anxiety is better, I don't have heartburn anymore, and well, I can eat again! I just want to make sure this matches with just having gluten intolerance.

I would definitely find another doctor to get a second opinion. It would definitely be hard to diagnose you at this point, since you are gluten free. You would have to do a gluten challenge. Your doctors assessment of Celiac Disease is very outdated. I am 5'8 and at a normal weight, and I was diagnosed with it. It has nothing to do with being short, unless it affected you personally that way. Some people don't even develop full blown celiac until later in life. It will benefit you greatly to know whether you have celiac or a gluten intolerance, because a intolerance MIGHT go away. But celiac disease will never go away, gluten will always be toxic to your body. And if you reintroduced it thinking it was just an intolerance, you could experience no symptoms: Silent celiac, but the damage is still being done to your small intestine. So doing the gluten challenge and finding out for sure if you have it could prevent future disorders!

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Ok, after going 5 months gluten free and having sucessful results, my doctor says I'm gluten intolerant. However, he doesn't want me to do the Celiac testing because he says I would have to eat gluten, and he told me he doesn't think I have Celiac because we would have found out before now. He told me I have IBS and that a food intolerance may be linked to that, and that my gluten intolerance should likely go away on its own it a few years. I asked him the symptoms of Celiac disease and he said, people with Celiac are short and skinny. I kind of looked at him weird because I am about 4' 11'' and weigh a whopping 100 pounds. So I figured I would just call myself gluten intolerant because I may not have Celiac disease, however, I think its entirely possible that I do. Here are my questions:

1.) Does gluten intolerance cause intestinal damage as well as Celiac disease?

2.) Do people with gluten intolerance have the same symptoms as Celiac disease, but just not the long term risk?

3.) Does gluten intolerance actually go away?

Also from what I have read about, an intolerance does not cause damage, only symptoms. And many of them do go away after staying away from them for a long period of time.

I want to understand this as much as possible.

I feel like my body has been healing since I stopped eating gluten: I am no longer constipated, my allergies are better, I have more energy, my anxiety is better, I don't have heartburn anymore, and well, I can eat again! I just want to make sure this matches with just having gluten intolerance.

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1.) Does gluten intolerance cause intestinal damage as well as Celiac disease?

It can. It can also attack any other organ of the body.

2.) Do people with gluten intolerance have the same symptoms as Celiac disease, but just not the long term risk?

Yes the symptoms can be the same and there is the same long term risk.

3.) Does gluten intolerance actually go away?

No, although some with GI or Celiac can seem to tolerate gluten again, hence the thought that children would outgrow celiac, the autoimmune reaction will catch up with the system eventually.

I want to understand this as much as possible.

I feel like my body has been healing since I stopped eating gluten: I am no longer constipated, my allergies are better, I have more energy, my anxiety is better, I don't have heartburn anymore, and well, I can eat again! I just want to make sure this matches with just having gluten intolerance.

Yes this also matches with celiac. Celiac testing is quite unreliable unless a firm diagnosis is made through blood and biopsy. Unfortunately for some of us a blood test will never show positive and we have 22 ft of small intestine and damage can be patchy and get missed. Also some doctors fail to recognize the signs of celiac that precede total villi destruction and are told they don't have it when in reality enough damage just hasn't been done yet. They are commonly told to continue eating gluten and be rebiopsied later to confirm. IMHO this is medicine at it's worst. If you are seeing resolution of your symptoms gluten-free stay that way and don't get too hung up on whether it is GI or Celiac. IMHO they are both the same and the need to be strictly gluten free for life is the same for both. Personally I wish they would do away with the term gluten intolerance as it makes it seem it is less serious, it is not

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Thank you all for responding so far. I see many of you said my docs information was outdated, which I suspected too. I told him I had tried some wheat free rye bread a while back to see if it would make me sick and he said, "Well if there is no wheat in it there is no gluten." He means well but I don't feel like he knows a lot. My friend has the same doctor and she finally got referred to a specialist because she was having severe stomach problems that he was trying to convince her was IBS as well. She said she has no bathroom issues though. I think he just wants everyone to have IBS.

I'm not sure how to go about finding another doctor. I would have to go through my insurance.

Do you guys recommend a genetic test?

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It's really easy to get diagnosed 'gluten intolerant' (and IBS for that matter) by a doctor who is essentially throwing up their hands. In other words, this doctor does not know if you have celiac or not, because the current tests for it are really only helpful when positive (negative=inconclusive, not you definitely don't have it). But all they can be sure of (and you observed this yourself) is that your body does not tolerate gluten. I got the same shtick from my first doctor, who also told me I'd have to be much skinnier to be celiac (I suddenly gained weight, as some do with celiac).

As others have said here, your doctor is waaay behind on his celiac information. This stuff makes me so mad, it's so terribly irresponsible. In my own case, my mother is a diagnosed celiac, and I had the exact same symptoms as her. It seemed obvious to test me. But it was still early enough that I still had villi in my intestine

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Ravenwoodglass, you seem to know a lot about this. I agree with staying gluten free. The longer I go the worse it is when I eat gluten. It is not difficult to give up eating it. Actually one of the funny things is that I can still eat a lot of my favorite foods. My parents thought it was strange that I used eat weird foods, like I would make my own chicken and rice soup instead of using the canned kind (my kind was gluten free), and I used to hate breakfast food and while my family ate cereal I would eat a plain hotdog that I would dip in ketchup.

I also used to get hungry so much, and I mean like I was starving every 2 or 3 hours, and would get shaky. That has resolved itself. I think I may have gained a few pounds also (I think I weighted like 80-some pounds for a while in high school). I also became lactose intolerant about a month into the diet.

What do I do from here?

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Ravenwoodglass, you seem to know a lot about this. I agree with staying gluten free. The longer I go the worse it is when I eat gluten. It is not difficult to give up eating it. Actually one of the funny things is that I can still eat a lot of my favorite foods. My parents thought it was strange that I used eat weird foods, like I would make my own chicken and rice soup instead of using the canned kind (my kind was gluten free), and I used to hate breakfast food and while my family ate cereal I would eat a plain hotdog that I would dip in ketchup.

I also used to get hungry so much, and I mean like I was starving every 2 or 3 hours, and would get shaky. That has resolved itself. I think I may have gained a few pounds also (I think I weighted like 80-some pounds for a while in high school). I also became lactose intolerant about a month into the diet.

What do I do from here?

It sounds like you are already on the right path. Just stick with a gluten free diet and start feeling better! I was also very tiny in HS and then at about 21 I started to gain weight. I figured that it was just my body catching up with all of the crap that I ate and didn't put much more thought into it. Yesterday I had a follow up with my GI (I was a lucky one that got a positive diagnosis) and he is concerned with my weight loss since starting the diet. I also have some other things that showed up on my most recent blood work so he has ordered a CT Scan to look at my tummy, but I think he is NUTS that he is worried about weight loss. I am not obese by any means, but can definately stand to loose a few pounds without any ill effects on my body. I have drastically changed my eating habits, and have cut out most junk food. Only seems natural that I would lose weight, but I am trusting his judgement based on his concerns of the last round of bloodwork.

If you are unable to obtain a positive dx, then just do what makes you feel best. If Gluten Free helps you stay healthy then keep doing it. That is my 2 cents worth at least.

Good Luck and keep coming back here for ideas and support!!

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Ravenwoodglass, you seem to know a lot about this. I agree with staying gluten free. The longer I go the worse it is when I eat gluten. It is not difficult to give up eating it. Actually one of the funny things is that I can still eat a lot of my favorite foods. My parents thought it was strange that I used eat weird foods, like I would make my own chicken and rice soup instead of using the canned kind (my kind was gluten free), and I used to hate breakfast food and while my family ate cereal I would eat a plain hotdog that I would dip in ketchup.

I also used to get hungry so much, and I mean like I was starving every 2 or 3 hours, and would get shaky. That has resolved itself. I think I may have gained a few pounds also (I think I weighted like 80-some pounds for a while in high school). I also became lactose intolerant about a month into the diet.

What do I do from here?

Where you go from here is to the diet followed very strictly. I don't think I would persue genetic testing unless you can afford it and are being tested for all the genes. My daughter had genetic testing done after having both positive bloods and biopsy and has used the genetic results as 'proof' to me that she is not and never was celiac. Her doctors, at one of the best hospitals in the country, only tested for 2 of the 9 celiac associated genes. I got tested after she told me this and it turns out I do carry a double copy of a gene that is rare in the caucasian US population. It is not considered a celiac related gene by most doctors here, instead it is considered a gene for RA which I also had strong symptoms of. In the Far East is a recognized celiac related gene but not here. My arthritis by the way has been in remission now for 7.5 years. Makes me wonder how many RA patients should be on the diet.

Anyway I would advise you to get on and stay on the diet. Your body knows the answer.

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I disagree with this statement.

Jestgar- I was quoting from her original post, not agreeing. That is why I said she needed a new doc.

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I definitely will stay with the diet. I just want to know, though, if I do have Celiac disease. I feel like knowing that would be beneficial. I'm not sure what to tell my doctor though. Did anyone have a good experience with genetic testing? I was looking at the one given by Prometheus labs. Has anyone had a good experience with them?

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Jestgar- I was quoting from her original post, not agreeing. That is why I said she needed a new doc.

I figured it was something like that, it just wasn't clear. :)

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Thank you all for responding so far. I see many of you said my docs information was outdated, which I suspected too. I told him I had tried some wheat free rye bread a while back to see if it would make me sick and he said, "Well if there is no wheat in it there is no gluten." He means well but I don't feel like he knows a lot. My friend has the same doctor and she finally got referred to a specialist because she was having severe stomach problems that he was trying to convince her was IBS as well. She said she has no bathroom issues though. I think he just wants everyone to have IBS.

I'm not sure how to go about finding another doctor. I would have to go through my insurance.

Do you guys recommend a genetic test?

Wow gluten is found in so many things, including barley and rye. Your doctor needs to stop talking about stuff he doesn't know about. Its also found in a number of mixed spices, and processed foods. Cross contamination is a big deal to.

Genetic testing does not diagnose celiac disease. BUT it will show if you have the genes for it, and if you do, then you are at risk of developing the disease or you might already have it. If you do not have the genes for it, then you do not and will not have celiac disease. check out this website, it is wonderful!!! http://www.celiacdisease.net/ they have so much information for newly diagnosed and for people with a lot of questions. They also sent me a gluten free care package, however you can only get it if you have had a positive biopsy.

The reason I strongly recommend being diagnosed is because celiac is way more serious then a gluten intolerance. It is a serious multi-disorder disease and needs monitoring by doctors who know what they are doing. Unfortunatly those doctors are hard to find in america. I had to ask my doctor to test me and even then, she was like " usually celiac patients have more diarreah then constipation" that statement is wrong, in fact studies have shown that more than half of people diagnosed with it have no diarreah at all. So basically she knew enough to diagnose me, but I won't be going back to her. That whole experience angers me, we need doctors who know there stuff, especially with a disease that is so common.

Im not sure where you live, but there should be a GLUTEN INTOLERANCE GROUP (GIG) around where you live. Just type it into google, and hopefully you can find one. On the north texas gig webpage they have a list of doctors who specialize in celiac.

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The reason I strongly recommend being diagnosed is because celiac is way more serious then a gluten intolerance. It is a serious multi-disorder disease and needs monitoring by doctors who know what they are doing.

Technically one would define me as gluten intolerant because I don't show up in blood work even though my wise doctors did diagnose me as celiac. I was literally laying on my bathroom floor bleeding from my intestines when I was supposed to be at the endo because of my severe reaction to the challenge.

I would disagree strongly that GI is less serious. If you want to know why look at my sig. My skin and brain were severely effected long before any gut symptoms seemed abnormal.

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I have Celiac Disease, and I'm not short or skinny. I did lose weight before diagnosis (went from 230lbs to 170lbs in a couple months) but i'm also 6 feet tall and back to about 215lbs.

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Definitely find a new doctor. With your condition you need medical professionals that at least have a decent clue of what they are dealing whenever you come in to see them. Be sure to let your doctor know why you are leaving him though. While his ineptitude won't be harming you anymore, letting him know that he is seriously lacking in part of his knowledge may help prompt him to refresh his info on this subject which could save someone else's life in the future.

And yeah, you don't have to be short and skinny. I'm over 6ft so it didn't affect me that way but I've always consumed around 4k-5k calories a day to maintain my bare minimum weight.

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"gluten intolerance should likely go away on its own it a few years."

This is what people used to think. I guess they still do. When my grandmother was in her mid 20s (mid 1940s), she went on a special diet because of her "wheat problems." Eventually the doctors told her that she had healed, and that the problems went away, so she went back to a normal diet. This was before people did biopsies.

When she died she was almost 86. When you read about all the associated conditions that go with celiac disease, she had quite a few. She had a couple autoimmune diseases. She had rheumatoid arthritis, thyroid issues, scleroderma, diabetes (type 2, then she had to inject insulin at some point), at least one miscarriage. I can't even think of all the other stuff she had, but I know her gall bladder and liver failed as well.

I strongly believe that most of these things would not have developed if she had stayed on the diet more than a few years.

Also, in terms of genetic testing: I personally don't read too much into it. I don't have those alleles, but several people in my family can't eat gluten, and several people in my family have problems associated with gluten intolerance (like multiple sclerosis, anemia, etc.). Clearly there is a genetic link there, but they haven't added other alleles or indicators into the definition of celiac disease. And you know what? I don't really care whether I fit into the narrow definition of celiac disease. The fact still remains that I feel like hell when I eat gluten, and I feel awesome when I don't. That's not to say you shouldn't get the tests; I'm just saying you shouldn't ignore how you feel on the diet if the tests do come back negative.

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This is what people used to think. I guess they still do. When my grandmother was in her mid 20s (mid 1940s), she went on a special diet because of her "wheat problems." Eventually the doctors told her that she had healed, and that the problems went away, so she went back to a normal diet. This was before people did biopsies.

When she died she was almost 86. When you read about all the associated conditions that go with celiac disease, she had quite a few. She had a couple autoimmune diseases. She had rheumatoid arthritis, thyroid issues, scleroderma, diabetes (type 2, then she had to inject insulin at some point), at least one miscarriage. I can't even think of all the other stuff she had, but I know her gall bladder and liver failed as well.

I strongly believe that most of these things would not have developed if she had stayed on the diet more than a few years.

Also, in terms of genetic testing: I personally don't read too much into it. I don't have those alleles, but several people in my family can't eat gluten, and several people in my family have problems associated with gluten intolerance (like multiple sclerosis, anemia, etc.). Clearly there is a genetic link there, but they haven't added other alleles or indicators into the definition of celiac disease. And you know what? I don't really care whether I fit into the narrow definition of celiac disease. The fact still remains that I feel like hell when I eat gluten, and I feel awesome when I don't. That's not to say you shouldn't get the tests; I'm just saying you shouldn't ignore how you feel on the diet if the tests do come back negative.

Thank you everyone for responding. It is nice to feel like I have support. First of all, I just wanted to express that I'm not doubting the diet. It has worked wonders for me! However, my concern is that if I have Celiac disease, I want to be diagnosed with it. My thinking was that if a genetic test came back positive, I would get more help from my doctor. Also, I don't know how to change my doctor. I will have to look into it.Unless he can referr me to someone.

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Thank you everyone for responding. It is nice to feel like I have support. First of all, I just wanted to express that I'm not doubting the diet. It has worked wonders for me! However, my concern is that if I have Celiac disease, I want to be diagnosed with it. My thinking was that if a genetic test came back positive, I would get more help from my doctor. Also, I don't know how to change my doctor. I will have to look into it.Unless he can referr me to someone.

Depending on your area it might be slightly different cause some GPs in heavily populated areas stop taking new clients occasionally due to overcrowding of their waiting rooms. Like minded people normally make for great associates so I wouldn't really take too much stock in a referral from an incompetent doctor, it'll probably just lead you to another incompetent one. Recommendations from family/friends/coworkers is a great place to start looking for a new one. Then get your insurance info in front of you and call up to the offices to find out if a) they're accepting new patients and B) they accept your insurance.

Alternatively a lot of insurance companies will actually provide you with a semi-detailed list of doctors in your area that take your insurance.

Don't simply take this as the last step though. In your first visit with the doctor let them know about your concerns of gluten in your diet and ask them to tell you right then and there what they knows about the associated conditions and treatments. If they only come back with sparse information you may want to look some more. No point in getting into a working relationship with yet another doctor who won't be able to properly treat you.

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Depending on your area it might be slightly different cause some GPs in heavily populated areas stop taking new clients occasionally due to overcrowding of their waiting rooms. Like minded people normally make for great associates so I wouldn't really take too much stock in a referral from an incompetent doctor, it'll probably just lead you to another incompetent one. Recommendations from family/friends/coworkers is a great place to start looking for a new one. Then get your insurance info in front of you and call up to the offices to find out if a) they're accepting new patients and B) they accept your insurance.

Alternatively a lot of insurance companies will actually provide you with a semi-detailed list of doctors in your area that take your insurance.

Don't simply take this as the last step though. In your first visit with the doctor let them know about your concerns of gluten in your diet and ask them to tell you right then and there what they knows about the associated conditions and treatments. If they only come back with sparse information you may want to look some more. No point in getting into a working relationship with yet another doctor who won't be able to properly treat you.

I have military insurance, which means they kind of assign me a doctor. I'll look into it.

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Do you normally see a GP about this or would it be better to see a GI specialist?

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    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
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