Gluten Intolerant Or Not Gluten Intolerant - That Is The Question.

[Amzippity]

Hi everyone!

I've been lurking on this site for quite a while now. I finally have all my test results in and my doctor says I do not have Celiac. Can you please tell me what you think?

First, my symptoms: Since I was about 8 yrs old I've had diarrhea and severe abdominal cramping after eating (I have other symptoms, but these are primary). I was diagnosed with IBS. My mom also has had these symptoms since she was a child. In April 2004 I went low carb and my symptoms cleared up. Last summer (summer 2005) I was told about gluten and Celiac disease. I made an appointment with a GI for January of this year and resumed eating gluten. My symptoms did not come back as bad as they used to be (though they definately came back), but this is probably because I was not eating as much gluten as I used to and my general diet was more healthy.

The part that always confused me was that I got sick after eating milk products and fatty foods. Pizza, fried foods, pasta with alfredo sauce, burgers with lots of cheese, ice cream and things like that made me sick. This made sense once I heard of Celiac because of the lactose and fat malabsorptions. Also, I've always bruised easily, which relates directly to Vitamin K malabsorption.

Well, my test results have come back.

Lactose intolerance breath test: Negative

Fructose intolerance breath test: Negative

Celiac gene test: HLA-DQ2: Positive

HLA-DQ8: Negative

Biopsy: Negative

Bloodwork: tTG-IgA: 3 units (<20: negative): Negative

I thought I was going to have a full Celiac panel done, but this is the only test that I see on my bloodwork that is for Celiac. I had a lot of other blood tests done along with it like iron and calcium, which I can post if needed, but this is the only Celiac test that she did.

So I'm not sure what to think. My doctor says I do not have Celiac since the gene I am positive for is present in 40% of the general population. (??) My biopsy was negative, but although I was eating gluten leading up to it, I was trying to eat healthily so I may not have been eating as much as I used to or perhaps not enough. When I went low carb I only got sick twice in over a year (unheard of!!). Although I was low carb, I was not gluten free. I added vital wheat gluten to baked goods as is common in low carb cooking because I didn't know about gluten. It didn't seem to affect me too much, but I didn't eat it often (special occasions only).

Since my biopsy, I've gone back to not eating gluten (I have eaten it on occasion and I need to do better.) I have not been getting sick for the past few weeks.

What do you guys think? I've read a lot on this site and I'm pretty sure I'm gluten intolerant. My main concern is that although I don't seem to be Celiac, if I am gluten intolerant would I still have the same symptoms? Eating gluten itself does not seem to make me sick as much as eating lots of fats and milk products. This makes sense for Celiac - is it the same for gluten intolerance? Or if I was non-Celiac gluten intolerant would gluten itself make me sick (like for lactose intolerance)?

I would really appreciate any thoughts you guys have.

Thanks.

[Rachel--24]

First, without having the full panel done you really cant determine anything with one blood test (unless it was positive). For example your doctor didnt order the Total IgA so you may be IgA deficient and therefore would never show up positive on any kind of IgA test. Since some Celiacs have IgA deficiency its important to know this when ruling Celiac in or out.

Also having been off gluten and then back on it may have affected test results....especially if you werent eating alot of gluten.

The important thing is that you noticed improvement on the diet and a return of symptoms back on gluten...sooo basically you have your answer. Gluten Intolerance w/out Celiac can cause the same symptoms and it can be just as damaging to your health.

[aikiducky]

It sounds like you might also be casein intolerant. I say that because you get sick with milk products, but the lactose test was negative. That could mean that you react to the milk protein, casein, and not lactose, milk sugar. You can easily test it by not eating any dairy for a couple of weeks and then reintroducing it.

Pauliina

[CMCM]

I'd suggest taking matter into your own hands and get the Enterolab full panel test....it will test for antibodies and autoimmine activity, and also for malabsorption. Plus you get a more detailed gene test, and one for casein sensitivity. I found out that I had both the celiac and the gluten sensitivity genes, AND more important, that I am casein sensitive. Although I definitely react to gluten, my greatest reactions come from eating dairy and now I know why. Whether gluten sensitive or celiac, you are still advised to not eat gluten. And if you are casein sensitive, you should not eat dairy because it could also damage your intestines same as gluten does.

And by the way, I had a poorly and incompletely ordered celiac blood test 5 years ago, ordered by my oh so ignorant doctor...and that test was totally negative.

Read the books "Dangerous Grains", "Against the Grain" and "Wheat Free, Worry Free" and you'll know how to approach things, and you'll also realize how incredibly little your doctors knows about this condition and how to diagnose it!

[Amzippity]

First, without having the full panel done you really cant determine anything with one blood test (unless it was positive). For example your doctor didnt order the Total IgA so you may be IgA deficient and therefore would never show up positive on any kind of IgA test. Since some Celiacs have IgA deficiency its important to know this when ruling Celiac in or out.

Thank you. I asked my doctor if I just missed this in my results of if it just wasn't tested. Hard to think the bloodwork was reliable if total IgA wasn't tested.

Also having been off gluten and then back on it may have affected test results....especially if you werent eating alot of gluten.

The important thing is that you noticed improvement on the diet and a return of symptoms back on gluten...sooo basically you have your answer. Gluten Intolerance w/out Celiac can cause the same symptoms and it can be just as damaging to your health.

Thank you. I wasn't sure if gluten intolerance w/out Celiac can result in the same symptoms. It's good to know.

It sounds like you might also be casein intolerant. I say that because you get sick with milk products, but the lactose test was negative. That could mean that you react to the milk protein, casein, and not lactose, milk sugar. You can easily test it by not eating any dairy for a couple of weeks and then reintroducing it.

Pauliina

I never considered this. After reading this yesterday I did a little research into it. Can gluten sensitivity create a sensitivity to casein? I don't believe I have a casein sensitivity because I eat a lot of dairy products and whey protein and they don't usually cause a problem. The only thing that routinely causes a problem is Dannon's Carb Control Smoothies. Their ingredients are: "Water, skim milk, cream, strawberry puree, milk protein concentrate, blueberry puree, contains less than 1% of whey protein concentrate, natural and artificial flavors, modified corn starch, sucralose, potassium sorbate (to maintain freshness), malic acid, sodium citrate, Red 40, Blue1. Contains Active Yogurt Cultures. " A casien intolerance would make sense based on my reaction to these smoothies. I'm not sure why I have a reaction to these smoothies and I'm not sure if I would have the same reaction after being gluten-free for a while. I'll keep it in mind. Thanks.

I'd suggest taking matter into your own hands and get the Enterolab full panel test....it will test for antibodies and autoimmine activity, and also for malabsorption. Plus you get a more detailed gene test, and one for casein sensitivity. I found out that I had both the celiac and the gluten sensitivity genes, AND more important, that I am casein sensitive. Although I definitely react to gluten, my greatest reactions come from eating dairy and now I know why. Whether gluten sensitive or celiac, you are still advised to not eat gluten. And if you are casein sensitive, you should not eat dairy because it could also damage your intestines same as gluten does.

And by the way, I had a poorly and incompletely ordered celiac blood test 5 years ago, ordered by my oh so ignorant doctor...and that test was totally negative.

Read the books "Dangerous Grains", "Against the Grain" and "Wheat Free, Worry Free" and you'll know how to approach things, and you'll also realize how incredibly little your doctors knows about this condition and how to diagnose it!

I considered the Enterolab tests, but it's rather cost-prohibitive right now. I'll look into whether my insurance company will cover part of the expense. I have "the gluten-free bible" (revised version of Against the Grain) but I haven't been overly impressed by it. Once upon a time I got Dangerous Grains out of the library (way back before I'd ever heard of gluten). I had gotten it out for reasons unrelated to Celiac disease, but I think it's worth checking out again. The doctor I chose to see had been recommended in "the gluten-free bible" so I had high hopes.

Thanks for your help, everyone. It's rather frustrating to feel like I'm going through this alone. I appreciate your help.

[par18]

Good Morning,

Just finished reading your post. I have a question for you. If you think you may be gluten intolerant or may have celiac disease or just feel bad when you eat certain things do you think the treatment would be different for any of the three? Would you feel better hearing some diagnosis from a doctor? It is my feeling after having been dx'd with Celiac in May 05 that I could have done so much more to have prevented my symptoms (weight loss, diarrhea) simply by reading this website. You can experiment with your diet at any time with no one's permission. I feel that a lot of people right now are suffering because they do not want to be diagnosed with celiac and have to alter their lifestyle. Some of those same people also will accept nothing less than a doctor's "expert " opinion. If eating certain things definitely affect your health then you should eliminate them regardless of any diagnosis. I am always skeptical when talking with people about this disease because I don't know how committed they are about truly wanting to feel better. My family doctor has had only two cases in his 26 year career. My case had the classic symptoms. The other case had only anemia as a symptom. You be the judge. If you eliminate gluten completely and feel good then what more do you need? Good luck.

Tom

[happygirl]

amzippity----some Celiacs are lactose intolerant until they are healed. Once they are healed, they can tolerate lactose. The intestinal villi have the enzyme "lactase" on the tips, which helps digest lactose. When the villi are damaged, the lactase enzyme suffers also. (I learned that on this board). So some people are lactose/casein intolerant, and others are only "temporarily" intolerant.

[CMCM]

re: "Can gluten sensitivity create a sensitivity to casein?"

I don't think so....you are either casein sensitive or you aren't. I belive the celiac situation can create a lactose intolerance, though, which seems to be a temporary condition...i.e. after the intestinal villi heal thru a gluten free diet over a period of time, then the healed villi can handle lactose (which is the milk sugar, not the milk protein).

If only one dairy product bothers you, perhaps it is one of the other ingredients in the yogurt you mentioned. You might want to try a different yogurt with fewer ingredients and see what happens.

[Amzippity]

Good Morning,

Just finished reading your post. I have a question for you. If you think you may be gluten intolerant or may have celiac disease or just feel bad when you eat certain things do you think the treatment would be different for any of the three? Would you feel better hearing some diagnosis from a doctor? It is my feeling after having been dx'd with Celiac in May 05 that I could have done so much more to have prevented my symptoms (weight loss, diarrhea) simply by reading this website. You can experiment with your diet at any time with no one's permission. I feel that a lot of people right now are suffering because they do not want to be diagnosed with celiac and have to alter their lifestyle. Some of those same people also will accept nothing less than a doctor's "expert " opinion. If eating certain things definitely affect your health then you should eliminate them regardless of any diagnosis. I am always skeptical when talking with people about this disease because I don't know how committed they are about truly wanting to feel better. My family doctor has had only two cases in his 26 year career. My case had the classic symptoms. The other case had only anemia as a symptom. You be the judge. If you eliminate gluten completely and feel good then what more do you need? Good luck.

Tom

I appreciate your response and since you don't know me from Adam I will try not to be offended.

I do not need a diagnosis from a doctor. I would, however, prefer to know what is wrong with me without question. I have altered my lifestyle to a significant degree and that is not a problem for me. I am not afraid of a diagnosis. However, perhaps my problem is with yeast and by eliminating gluten I am inadvertantly also reducing my yeast intake, which is reducing my symptoms. I am afraid of concluding my problem is gluten when it might in fact be something else. Maybe it's Candida? Maybe it's casein? In all honesty, I'm 95% sure it's gluten. I was posting this thread to hear what other people thought. I respect the opinion of the people on this board which is why I am posting my results here instead of taking my doctor's conclusions at face value. While I believe eliminating gluten from my diet reduced my symptoms, at this point I am viewing it as a correlation rather than cause and effect.

I understand how you feel about this subject, but please do not think that I am not trying my hardest to figure this stuff out on my own. I am currently gluten-free and I plan on staying that way until I learn otherwise.

Thanks.

amzippity----some Celiacs are lactose intolerant until they are healed. Once they are healed, they can tolerate lactose. The intestinal villi have the enzyme "lactase" on the tips, which helps digest lactose. When the villi are damaged, the lactase enzyme suffers also. (I learned that on this board). So some people are lactose/casein intolerant, and others are only "temporarily" intolerant.

I don't think I'm lactose intolerant, even when I'm eating gluten. I had lactose tests as a child, before I had ever heard of gluten and they were negative. I had another one a few weeks ago and it was negative again. When I first read about Celiac, I thought that this might be the case for me, but it doesn't look like it. I might be intolerant to casein, however. That's something I need to look into more thoroughly.

Thank you.

[penguin]

I appreciate your response and since you don't know me from Adam I will try not to be offended.

I do not need a diagnosis from a doctor. I would, however, prefer to know what is wrong with me without question.

I'm there with you. I needed some sort of signal from my doctor before I would go gluten-free. Trust me, I want to feel better, which is why I immediately went gluten-free after my dr said it was a possibility. There is no shame in wanting a diagnosis.

There are any number of things that act a lot like celiac, and a range of not connected symptoms that are celiac but don't look like it. That's why it takes so long to diagnose. Also, if you go gluten-free and THEN decide you want to do all of the tests, you're more likely to get a false negative. The tests are already not that sensitive.

And there are more serious things other than Celiac that could kill you on a more acute basis, so it's important to rule those things out.

I approach the voluntary gluten free diet with caution, because you're cutting out a huge group of foods. Gluten is poison to us, but to most people it's healthy, well, when it's not processed to oblivion. As celiacs, we've lost a massive source of slow burning complex carbohydrates. It's harder to get whole grains, and our starches like rice and corn and potatoes burn much faster. They also tend to spike the blood sugar.

Please don't flame me, because I do believe that the gluten-free diet is helpful to many many people, myself included. I also know that tests don't always show celiac or intolerance. I'm playing devil's advocate because this is a huge lifelong change and it should not be taken lightly.

If not eating gluten makes you feel better, then by all means, continue. Nobody knows your body like you do.

[par18]

I appreciate your response and since you don't know me from Adam I will try not to be offended.

I do not need a diagnosis from a doctor. I would, however, prefer to know what is wrong with me without question. I have altered my lifestyle to a significant degree and that is not a problem for me. I am not afraid of a diagnosis. However, perhaps my problem is with yeast and by eliminating gluten I am inadvertantly also reducing my yeast intake, which is reducing my symptoms. I am afraid of concluding my problem is gluten when it might in fact be something else. Maybe it's Candida? Maybe it's casein? In all honesty, I'm 95% sure it's gluten. I was posting this thread to hear what other people thought. I respect the opinion of the people on this board which is why I am posting my results here instead of taking my doctor's conclusions at face value. While I believe eliminating gluten from my diet reduced my symptoms, at this point I am viewing it as a correlation rather than cause and effect.

I understand how you feel about this subject, but please do not think that I am not trying my hardest to figure this stuff out on my own. I am currently gluten-free and I plan on staying that way until I learn otherwise.

Thanks.

I don't think I'm lactose intolerant, even when I'm eating gluten. I had lactose tests as a child, before I had ever heard of gluten and they were negative. I had another one a few weeks ago and it was negative again. When I first read about Celiac, I thought that this might be the case for me, but it doesn't look like it. I might be intolerant to casein, however. That's something I need to look into more thoroughly.

Thank you.

[par18]

I appreciate your response and since you don't know me from Adam I will try not to be offended.

I do not need a diagnosis from a doctor. I would, however, prefer to know what is wrong with me without question. I have altered my lifestyle to a significant degree and that is not a problem for me. I am not afraid of a diagnosis. However, perhaps my problem is with yeast and by eliminating gluten I am inadvertantly also reducing my yeast intake, which is reducing my symptoms. I am afraid of concluding my problem is gluten when it might in fact be something else. Maybe it's Candida? Maybe it's casein? In all honesty, I'm 95% sure it's gluten. I was posting this thread to hear what other people thought. I respect the opinion of the people on this board which is why I am posting my results here instead of taking my doctor's conclusions at face value. While I believe eliminating gluten from my diet reduced my symptoms, at this point I am viewing it as a correlation rather than cause and effect.

I understand how you feel about this subject, but please do not think that I am not trying my hardest to figure this stuff out on my own. I am currently gluten-free and I plan on staying that way until I learn otherwise.

Thanks.

I don't think I'm lactose intolerant, even when I'm eating gluten. I had lactose tests as a child, before I had ever heard of gluten and they were negative. I had another one a few weeks ago and it was negative again. When I first read about Celiac, I thought that this might be the case for me, but it doesn't look like it. I might be intolerant to casein, however. That's something I need to look into more thoroughly.

Thank you.

Hello again,

My intent is not to offend anyone. The comment about lactose intolerant I feel is right on. The tips of the villi are the first to go. I don't have a problem with lactose. When first diagnosed I abstained from dairy for the first two weeks on the diet. After that I drank milk with no problem. With so many things that can cause one distress from celiac (DH, weak bones, GI issues,anemia), there is no one definite set of symptoms. The treatment however is pretty much the same. Once on the diet most people I have talked to have responded pretty quickly. The amount of damage done will be the biggest factor in how long it takes to recover. I was pretty sick even though I did not have the classic symptoms all that long. The body can recover quickly once the offending agent (gluten) was removed. I was told that after two weeks on the diet I could have had another biopsy done and it might not show damage. Based on how quickly my symptoms subsided (36 hours) I don't doubt this would have been the case. Gaining back the 30 lbs I lost took almost 6 months of steady gluten-free eating. I have had no instances of accidental gluten ingestion. I say that because all of the previous symptoms ( bloating, indigestion,diarrhea) have "never" returned. I have had no "bad" days on the diet. It is however the most inconvenient thing I have ever done. The fact that I feel good physically is worth the inconvenience. We are better off today (internet, awareness) than those those people that went through this 10-20 years ago.

In closing let me say that when I went on the gluten-free diet I kept track of everything I ate for about the first 3 weeks. This was in case my symptoms returned. They did not so after that I just tried to read labels and watch as best I could. So far so good.

Tom

[ravenwoodglass]

Hi everyone!

I've been lurking on this site for quite a while now. I finally have all my test results in and my doctor says I do not have Celiac. Can you please tell me what you think?

First, my symptoms: Since I was about 8 yrs old I've had diarrhea and severe abdominal cramping after eating (I have other symptoms, but these are primary). I was diagnosed with IBS. My mom also has had these symptoms since she was a child. In April 2004 I went low carb and my symptoms cleared up. Last summer (summer 2005) I was told about gluten and Celiac disease. I made an appointment with a GI for January of this year and resumed eating gluten. My symptoms did not come back as bad as they used to be (though they definately came back), but this is probably because I was not eating as much gluten as I used to and my general diet was more healthy.

The part that always confused me was that I got sick after eating milk products and fatty foods. Pizza, fried foods, pasta with alfredo sauce, burgers with lots of cheese, ice cream and things like that made me sick. This made sense once I heard of Celiac because of the lactose and fat malabsorptions. Also, I've always bruised easily, which relates directly to Vitamin K malabsorption.

Well, my test results have come back.

Lactose intolerance breath test: Negative

Fructose intolerance breath test: Negative

Celiac gene test: HLA-DQ2: Positive

HLA-DQ8: Negative

Biopsy: Negative

Bloodwork: tTG-IgA: 3 units (<20: negative): Negative

I thought I was going to have a full Celiac panel done, but this is the only test that I see on my bloodwork that is for Celiac. I had a lot of other blood tests done along with it like iron and calcium, which I can post if needed, but this is the only Celiac test that she did.

So I'm not sure what to think. My doctor says I do not have Celiac since the gene I am positive for is present in 40% of the general population. (??) My biopsy was negative, but although I was eating gluten leading up to it, I was trying to eat healthily so I may not have been eating as much as I used to or perhaps not enough. When I went low carb I only got sick twice in over a year (unheard of!!). Although I was low carb, I was not gluten free. I added vital wheat gluten to baked goods as is common in low carb cooking because I didn't know about gluten. It didn't seem to affect me too much, but I didn't eat it often (special occasions only).

Since my biopsy, I've gone back to not eating gluten (I have eaten it on occasion and I need to do better.) I have not been getting sick for the past few weeks.

What do you guys think? I've read a lot on this site and I'm pretty sure I'm gluten intolerant. My main concern is that although I don't seem to be Celiac, if I am gluten intolerant would I still have the same symptoms? Eating gluten itself does not seem to make me sick as much as eating lots of fats and milk products. This makes sense for Celiac - is it the same for gluten intolerance? Or if I was non-Celiac gluten intolerant would gluten itself make me sick (like for lactose intolerance)?

I would really appreciate any thoughts you guys have.

Thanks.

Have you considered having an allergist or other doctor guide you through an elimination diet? It can be time consuming but can help pinpoint other intolerances that may effect you. I was consistantly negative on testing and after being very, very sick for 15 years (daily D joint skin muscle and neuro problems) I was at last referred to a very old very savvy allergist who guided me through the process and we at last discovered the celiac.

[NOBREAD4ME]

Have you considered having an allergist or other doctor guide you through an elimination diet? It can be time consuming but can help pinpoint other intolerances that may effect you. I was consistantly negative on testing and after being very, very sick for 15 years (daily D joint skin muscle and neuro problems) I was at last referred to a very old very savvy allergist who guided me through the process and we at last discovered the celiac.

Hi, I am new to the whoe gluten-free life. Yesterday I was told I have Celiac. I cried and got angry then thankful, then confused. I was dx by a stool sample so immediatley I have requested my doc to do bloodwork. I wish I would have known what blood work to ask for though because Im not so sure my doc knows either. AQnyways...if you don;t mind me asking what were/are your symptoms. I feel like I am a classic case for this but I am having other symptoms I have not yet read about with celiac. Please Help me. Tomarrow I start a detox diet that will restrict every thing I eat except fresh veggies, fruit, fish, millet and a couple other whole foods. I will do this for three weeks then I cant resume normal eatting with out the gluten of course. I should have my blood test in 1wk to ten days....I'll let you know. In the mean time if you would I would llike to hear other peoples testimony of symptoms. Thanks!!

Have you considered having an allergist or other doctor guide you through an elimination diet? It can be time consuming but can help pinpoint other intolerances that may effect you. I was consistantly negative on testing and after being very, very sick for 15 years (daily D joint skin muscle and neuro problems) I was at last referred to a very old very savvy allergist who guided me through the process and we at last discovered the celiac.

Hi, I am new to the whoe gluten-free life. Yesterday I was told I have Celiac. I cried and got angry then thankful, then confused. I was dx by a stool sample so immediatley I have requested my doc to do bloodwork. I wish I would have known what blood work to ask for though because Im not so sure my doc knows either. AQnyways...if you don;t mind me asking what were/are your symptoms. I feel like I am a classic case for this but I am having other symptoms I have not yet read about with celiac. Please Help me. Tomarrow I start a detox diet that will restrict every thing I eat except fresh veggies, fruit, fish, millet and a couple other whole foods. I will do this for three weeks then I can resume normal eatting with out the gluten of course. I should have my blood test in 1wk to ten days....I'll let you know. In the mean time if you would I would llike to hear other peoples testimony of symptoms. Thanks!!