Celiac Vs. Gluten Intolerance

[laura3377]

I have been tested for Celiac by my Dr. and was negative although my TTG was borderline positive (one point below a positive score). I also had a endoscopy and biopsy which were negative. I have been having trouble with gaining weight, floating stools, oil in water with bowel movements (not always), many vitamin deficiencies - potassium, calcium, iron, B12, Vitamin D and some other symptoms. If I don't have Celiac what could be causing these symptoms? Could a gluten intolerance cause malabsorption? I've been tested for other things that could cause malabsorption and they are all negatvie. My stool test ordered by my Dr. showed no malabsorption but I know that I have a problem. I was fine up untiil a couple of years ago and now my digestion and health are a mess. Any words of advice?

Thanks!

[C'smum]

I have been tested for Celiac by my Dr. and was negative although my TTG was borderline positive (one point below a positive score). I also had a endoscopy and biopsy which were negative. I have been having trouble with gaining weight, floating stools, oil in water with bowel movements (not always), many vitamin deficiencies - potassium, calcium, iron, B12, Vitamin D and some other symptoms. If I don't have Celiac what could be causing these symptoms? Could a gluten intolerance cause malabsorption? I've been tested for other things that could cause malabsorption and they are all negatvie. My stool test ordered by my Dr. showed no malabsorption but I know that I have a problem. I was fine up untiil a couple of years ago and now my digestion and health are a mess. Any words of advice?

Thanks!

[C'smum]

I have family members that have the same symptons as you with negative test results as well as some members including myself positve for celiacs.I can only suggest as long as you are not due for more testing is to go gluten free for a month and see how you feel.

[AndreaB]

If you aren't planning on further testing then go gluten free for some time (at least 1 month, preferrably 6) and see if you notice any changes for the better.

Other things can cause malabsorption but gluten free may be all the further you need to go. If symptoms don't resolve you'll need to dig deeper. For my family it was metals, but soy can also cause problems if you eat it.

If you can swing it I'd reccomend dairy and soy (if you eat it) free as well then add one at a time back in about 1 week apart, 2 weeks if you want to see if you have a threshhold that's crossed given time. Some people can eat foods that bother them on occasion (such as dairy) but not regularly.

[Rosebud710]

I'm relatively new at this, but here are my thoughts . . .

I consider myself gluten intolerant. I don't get immediate reactions when I eat gluten, it just slowly breaks down my immune system. So I just get sick easier if I keep eating gluen foods. If I eat too much gluten, like days on end, then I'll start getting a reaction. But I think celiacs have the immediate, digestive irritability than those who have an intolerance to gluten.

Hope this helps !

[ravenwoodglass]

I'm relatively new at this, but here are my thoughts . . .

I consider myself gluten intolerant. I don't get immediate reactions when I eat gluten, it just slowly breaks down my immune system. So I just get sick easier if I keep eating gluen foods. If I eat too much gluten, like days on end, then I'll start getting a reaction. But I think celiacs have the immediate, digestive irritability than those who have an intolerance to gluten.

Hope this helps !

Rosebud

The majority of people with celiac disease or gluten intoleance do not have symptoms that show up immediately. Gluten reactions are delayed for many whether 'celiac' or 'gluten intolerant'. Gluten causes an immune mediated response, this creates other autoimmune problems because the body starts to attack itself in the fight against gluten. The real difference between gluten intolerance and celiac as far as the medical community is concerned is villi destruction. If your villi are not destroyed you are considered gluten intolerant. Many are starting to realize that gluten effects the entire body and that the villi destruction is only one factor of the disease, and usually appears in the later stages. A lot of damage is done for many of us before we get to that point.

Laura, You should give the diet a try regardless of the outcome of your testing. You have nothing to lose and testing unfortunately misses a lot of us. Whether you are technically gluten intolerant or have progressed to full blown celiac the 'prescription' is the same, the gluten free diet. And the only way to know for sure if it will help you is to try it for a couple of months strictly.

Many of us do not show up in blood work, even folks who were diagnosed by endoscopy but you did. One point into positive is positive. Two of my family members had results that low and have seen fantastic resolution of their problems, I didn't show up positive at all and I am the one who was almost killed by this disease. Try the diet.

[Rosebud710]

Ravenwoodglass,

Thanks for clarifying that for me!

[ravenwoodglass]

Ravenwoodglass,

Thanks for clarifying that for me!

It is sooo confusing at first.

It doesn't help that in general the medical professionals know less about celiac than those of us who have been diagnosed and researching for years. Too bad many won't even take the time to look at valid research even if we shove it under their noses in black and white.

[JennyC]

I personally think that people are being diagnosed with gluten intolerance because of low quality testing methods. Classic intolerance is the inability to digest something and then digestive issues result from the overgrowth of bacteria or the osmotic activity caused by the undigested food in the gut. Intolerance is not an autoimmune disorder. If someone is intolerant they should have a low tTG and not show symptoms of autoimmune disorders. I think celiac testing must not be adequate. That being said, I don't know how to improve the testing methods. It seems to me that if serology numbers are elevated above normal mid range and there are symptoms or family history of celiac disease, then a person is most likely celiac. There are too many people on here with too severe of symptoms to be considered simply intolerant. In my personal opinion there needs to be research done to come up with more accurate testing methods.

Sorry for the rant.

[grommet]

I personally think that people are being diagnosed with gluten intolerance because of low quality testing methods. Classic intolerance is the inability to digest something and then digestive issues result from the overgrowth of bacteria or the osmotic activity caused by the undigested food in the gut. Intolerance is not an autoimmune disorder. If someone is intolerant they should have a low tTG and not show symptoms of autoimmune disorders. I think celiac testing must not be adequate. That being said, I don't know how to improve the testing methods. It seems to me that if serology numbers are elevated above normal mid range and there are symptoms or family history of celiac disease, then a person is most likely celiac. There are too many people on here with too severe of symptoms to be considered simply intolerant. In my personal opinion there needs to be research done to come up with more accurate testing methods.

Sorry for the rant.

Jenny you raise some interesting points. I don't have answers by the way - just further musings

I've not been diagnosed with celiac disease (neg bloods neg biopsy). My Gastro did not recognise GI so I diagnosed it myself. wish I'd just gone gluten-free straightaway when i suspected it was that that was causing the problem. Any ho hum...

However I am very poorly when eating gluten. Not just S & D but aching joints, fuzzy head, extreme fatigue. migraines; these would seem like malabsorption issues. I also feel that my immune system is definitely affected ( I have another illness that is worse when my immune system is low).

I go round in circles with this - if I haven't got damged villi then how do I get the malabsorption. If intolerance is not an auto immune condition then why do i feel my immune system is affected etc etc.

This article is interesting : Open Original Shared Link

Also there are 3 other close family members with different symptoms - all better when gluten-free. So intolerance can be hereditary!?!

[hathor]

It doesn't help when definitions or diagnostic criteria vary, does it? I have symptoms, a dietary response, and the relevant antibodies (albeit it was fecal testing) but not the so-called celiac genes. Wouldn't the presence of antibodies indicate an immune response? My genes are linked to neurological damage due to gluten, which seems kind of autoimmune to me. I also have (or had in January ...) malabsorption, according to Enterolab.

But there are plenty of doctors who would tell me I cannot have a problem with gluten.

I've heard some people refer to this as gluten sensitivity, rather than intolerance, to try to draw a distinction with classic intolerance, like lactose intolerance.

Anyway, laura3377, you could have had false negatives. That happens. Or the damage just hasn't gotten bad enough to show, but it is bad enough for you to react.

If I were you, I would try the diet and get the Enterolab testing, which is supposed to be more sensitive and show a reaction to gluten earlier than the traditional celiac tests. (You also don't have to be eating gluten.) You can have them test for casein and soy at the same time. Also, have you been taking probiotics? Those can help with a variety of digestive issues and they can't hurt you.

Your reaction to the diet is the ultimate test. It isn't as if there is any danger from omitting gluten (dairy/soy -- if you choose to go that far). And it isn't as if changing your diet stops you from doing what your doctors are recommending, since it sounds like they don't have a clue or a solution. It sounds like a situation where a little self-help is warranted.

[laura3377]

Thank you so much for all of the great responses! I think I will try to the gluten-free diet and see if I notice a difference. I have been "gluten-light" off and on for the past couple of years while trying to get a hold on all of the health problems I have been experiencing. However, I haven't managed to stay off gluten totally for any period of time. I will have to do a lot more meal planning but if this helps me to feel better it will be worth it.

[SIBLING/DAD]

I have a father and sister both diagnosed with Celiac. I'm in the process of getting retested. I was tested 5 years ago but didn't come up positve. Have you heard how often family members should be retested?

Rosebud

The majority of people with celiac disease or gluten intoleance do not have symptoms that show up immediately. Gluten reactions are delayed for many whether 'celiac' or 'gluten intolerant'. Gluten causes an immune mediated response, this creates other autoimmune problems because the body starts to attack itself in the fight against gluten. The real difference between gluten intolerance and celiac as far as the medical community is concerned is villi destruction. If your villi are not destroyed you are considered gluten intolerant. Many are starting to realize that gluten effects the entire body and that the villi destruction is only one factor of the disease, and usually appears in the later stages. A lot of damage is done for many of us before we get to that point.

Laura, You should give the diet a try regardless of the outcome of your testing. You have nothing to lose and testing unfortunately misses a lot of us. Whether you are technically gluten intolerant or have progressed to full blown celiac the 'prescription' is the same, the gluten free diet. And the only way to know for sure if it will help you is to try it for a couple of months strictly.

Many of us do not show up in blood work, even folks who were diagnosed by endoscopy but you did. One point into positive is positive. Two of my family members had results that low and have seen fantastic resolution of their problems, I didn't show up positive at all and I am the one who was almost killed by this disease. Try the diet.

[ravenwoodglass]

I have a father and sister both diagnosed with Celiac. I'm in the process of getting retested. I was tested 5 years ago but didn't come up positve. Have you heard how often family members should be retested?

Are you symptomatic? In any way? If so get retested. In countries that screen their populations on a routine basis they usually test at around 4, again at puberty and then will retest when a person becomes symptomatic. If you are having issues of any kind your doctor should again run a complete panel. Then no matter what the results you should give the diet a good trial as blood testing does leave a lot to be desired and misses up to 30% of us.