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Question- The Difference Between Gluten Intolerance And Celiac Disease?


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#1 passionfruit877

 
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Posted 30 March 2010 - 07:06 AM

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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#2 Brien

 
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Posted 30 March 2010 - 08:23 AM

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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#3 DougE

 
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Posted 30 March 2010 - 08:58 AM

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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#4 Wolicki

 
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Posted 30 March 2010 - 09:04 AM

"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 free is not so bad! If you are new, hang it there, it gets easier!

#5 Jestgar

 
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Posted 30 March 2010 - 09:09 AM

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

I disagree with this statement.
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#6 sannep77

 
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Posted 30 March 2010 - 09:28 AM

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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Sarah Anne

#7 sannep77

 
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Posted 30 March 2010 - 09:30 AM

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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Sarah Anne

#8 ravenwoodglass

 
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Posted 30 March 2010 - 09:46 AM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 passionfruit877

 
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Posted 30 March 2010 - 09:56 AM

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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#10 cdog7

 
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Posted 30 March 2010 - 10:10 AM

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 – but the endoscopy did show damage. I went gluten-free and within a couple weeks lost all the weight I'd suddenly put on, the scary dark circles under my eyes went away, I had enough energy to get up in the morning again, I didn't constantly ache all over, and I could eat and digest again normally! I was afraid I had cancer or something, I had no idea if it wasn't celiac, and I was overjoyed all this went away with the gluten-free diet.

I have pried and pried about this 'gluten-intolerant' thing, and I have yet to find a doctor that seems to know anything definitive about it – most admit it's something medicine is still trying to catch up with. There is no evidence that it is anything separate from celiac, and in fact there's good reason to think it actually is early-stage celiac (as with my case). That's how I'd treat it until proven otherwise!
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#11 passionfruit877

 
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Posted 30 March 2010 - 10:11 AM

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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#12 Bobbijo6681

 
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Posted 30 March 2010 - 10:44 AM

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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#13 ravenwoodglass

 
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Posted 30 March 2010 - 11:43 AM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#14 Wolicki

 
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Posted 30 March 2010 - 03:50 PM

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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Gluten free is not so bad! If you are new, hang it there, it gets easier!

#15 passionfruit877

 
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Posted 30 March 2010 - 04:56 PM

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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