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Question- The Difference Between Gluten Intolerance And Celiac Disease?


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#16 Jestgar

 
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Posted 30 March 2010 - 05:15 PM

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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#17 sannep77

 
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Posted 30 March 2010 - 07:35 PM

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 I see many of you said my docs information was outdated, which I suspected too.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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Sarah Anne

#18 ravenwoodglass

 
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Posted 31 March 2010 - 04:19 AM

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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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)

#19 DonaldandAlanda Evans

 
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Posted 31 March 2010 - 08:15 AM

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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#20 WheatChef

 
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Posted 31 March 2010 - 10:08 AM

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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Receiving a qualified diagnosis of Irritable Bowel Syndrome is as useful as a Psychiatrist giving you a diagnosis of "Doesn't Think Right".

#21 munchkinette

 
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Posted 31 March 2010 - 06:49 PM

"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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Gluten free since Feb 2006, Dairy and Soy free since 2009

Anemic off and on since 2003
Negative tTG Ab, IgA, Gliadin Ab IgA, wheat allergy (IgE) blood tests (Feb 2006)
Positive wheat allergy skin test(Apr 2006)and dietary response (Feb 2006)
Celiac grandmother (Dx in 1940s, "grew out of it")

Training for my first triathlon to support the Crohn's and Colitis Foundation of America.

~Amy

#22 passionfruit877

 
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Posted 01 April 2010 - 10:45 AM

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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#23 WheatChef

 
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Posted 01 April 2010 - 11:31 AM

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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Receiving a qualified diagnosis of Irritable Bowel Syndrome is as useful as a Psychiatrist giving you a diagnosis of "Doesn't Think Right".

#24 passionfruit877

 
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Posted 01 April 2010 - 01:05 PM

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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#25 passionfruit877

 
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Posted 01 April 2010 - 03:55 PM

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

 
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Posted 01 April 2010 - 04:58 PM

Which ever one has the better clue of it really. The medical "gold standard" of celiac is done with a biopsy however and that'll be administered by a GI. Any general practice doctor, endocrinologist or gastroenterologist would be able to give a decent diagnosis or order the correct lab work/procedures if they knew enough about the condition.

Not sure which type of doctor you were referring to in your original post who was so clueless, but if you're having difficulty getting another of that same type through your insurance then try one of the other types I mentioned above. Hell technically in a few years I hope neurologists will be decent at diagnosing this as well (not holding my breath).
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Receiving a qualified diagnosis of Irritable Bowel Syndrome is as useful as a Psychiatrist giving you a diagnosis of "Doesn't Think Right".

#27 lizzers

 
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Posted 01 April 2010 - 07:56 PM

From what I understand, gluten intolerance means that your body doesn't have the enzymes or whatnot for digesting - sort of like lactose intolerance- and that it isn't good for you to eat those foods. Celiac, on the other hand - is that when they can test for the specific igA in your blood to determine levels?

My situation is this - I'm overweight, have been for a while, probably PCOS. I grew up in a household where we ate no wheat, so a lot of my symptoms disappeared when I was 5, when my dad went on a wheat free diet. Before that I was thin, too thin, and had major problems with alternating diahrea etc.

So, I go to one doctor - I had tests for the antibodies done out of the country. Doctor one did a sigmoidscopy and a quick look in my esophagus (*ahem* not the right test *ahem*) and said I was fat and needed to lose weight. So, I was depressed for a bout three years, eating gluten, etc. Recently, I had a redo of the antibody test, from that they assessed that I was 90% likely to have celiac based on the bloodwork. The second opinion I got said that my intestine was sshowing some signs of damage, but not in line with a 34 year old (but she didn't know of my wheat free time, etc)... so she said, with the blood work/ my chronically low B12 and vitamin D levels, and the minimum amount of damage, she was happy to say I had celiac.

I think i was very lucky.

So, it would be up to you I think - either way, the gluten intolerance or celiac is life-long. For me i appreciated the diagnosis because now I *must* stay on gluten free diet - no more of this back and forth and wondering.



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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#28 WheatChef

 
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Posted 02 April 2010 - 10:34 AM

From what I understand, gluten intolerance means that your body doesn't have the enzymes or whatnot for digesting - sort of like lactose intolerance- and that it isn't good for you to eat those foods. Celiac, on the other hand - is that when they can test for the specific igA in your blood to determine levels?


Not really. In lactose intolerance you avoid dairy products because your body doesn't properly split the glucose-galactose bond and so the lactose molecule is passed further along your intestines where bacteria end up using it for fuel. In the process of the bacteria consuming lactose they emit gases which cause abdominal discomfort, bloating and gas which can be uncomfortable or perhaps slightly embarrassing however it's a problem localized completely in your intestines. With the gluten intolerance the gliadin molecules are altered by your enzymes but end up having a systemic effect on your body, not just your intestines, I think this is why some people prefer to call it gluten sensitivity over an intolerance which most often times just draws a simple parallel to other basic food intolerances like lactose.
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Receiving a qualified diagnosis of Irritable Bowel Syndrome is as useful as a Psychiatrist giving you a diagnosis of "Doesn't Think Right".

#29 Reba32

 
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Posted 02 April 2010 - 04:50 PM

one book I have says that Celiac disease is gluten intolerance gone horribly wrong, so I figured if you have gluten intolerance and continue to eat gluten, you may at some point end up with Celiac disease.

I did the gluten challenge last year (painful though it was!) because is wanted the definite diagnosis. One, because my husband is a jerk and wouldn' t believe me that food made me ill, and two, because I needed to know myself. The GI had me do 8 weeks of it, but in the final 2 weeks I had to taper off because I just couldn't stomach it anymore, so to speak! I still came up with a positive blood test (at 6 weeks) and positive biopsy (at 8 weeks).

One woman I know was told by her employer that unless she had a definitive diagnosis (ie: positive blood test and biopsy) then she would not ever be granted FMLA leave if she had to take time off related to gluten sensitivity symptoms. She was unable to continue the challenge though after 3 days, (which IMO should be positive diagnosis enough!) so whenever she gets glutened and has to take a time off, she gets grief at work. This to me is just not right!

I also wanted the diagnosis because I know it is genetic, and I know my sister's children have some GI problems, her son is Aspergian with migrains, and her daughter may also be (sans migraines). Since my own positive diagnosis I've been trying to convince her to have the kids and herself tested (she's definitely vitimin deficient, but has never been tested for celiac).
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#30 passionfruit877

 
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Posted 02 April 2010 - 06:56 PM

one book I have says that Celiac disease is gluten intolerance gone horribly wrong, so I figured if you have gluten intolerance and continue to eat gluten, you may at some point end up with Celiac disease.

I did the gluten challenge last year (painful though it was!) because is wanted the definite diagnosis. One, because my husband is a jerk and wouldn' t believe me that food made me ill, and two, because I needed to know myself. The GI had me do 8 weeks of it, but in the final 2 weeks I had to taper off because I just couldn't stomach it anymore, so to speak! I still came up with a positive blood test (at 6 weeks) and positive biopsy (at 8 weeks).


I like your definition. How bad was it to do the gluten challenge? I just don't know about that.

Ok, this is my plan. I'm going to do the genetic test through Prometheus labs, and see if I have the genes. If I don't, maybe I'll feel better calling myself gluten intolerant. If I do, I'll take it to my doctor and go from there. Surely they wouldn't ignore that.

PS- The ground was covered with pollen today, and my nose was fine. My husband even commented, asking how my nose was. I use to get sinus infections a lot. I used to have really bad allergies in general. I used to use that Flonase all the time. Can anyone relate? Maybe it had something to do with the gluten...
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