Gluten Intolerant, Not Celiac

[KarenLee]

OK, I know someone can help. I can't belive I am still confused about this.

EnteroLab told me that I am both genes gluten intolerant, do not have celiac genes. I have been gluten free since I found out(Oct.'06) and feel MUCH better. So, I told my sister to get tested(mother died colon cancer at age 49)so she (skeptically)went to Dr. in Dallas. test neg. for Celiac. He (Dr.) told her that if she was gluten intolerant, and she continued to eat gluten that she could not "get" Celiac later on. (He didn't tell her she may test neg. now, but could test pos. later) She said that he was a Dr. that does not support Dr. Fine. So, since seeing her Dr., she thinks it is not even important to get a stool test done, that it is not important if she is gluten intolerant or not! Am I wrong in thinking that if someone is gluten intolerant keeps ingesting gluten, that, even if they "feel fine"(with osteopenia and hypothyroidism)their health will delcine, that the gluten will cause them problems?? In the end, she is an adult and I cannot make her do anything...

thanks for reading..

[CarlaB]

I have mixed feelings on this. All the "non-celiac" genes are gluten intolerant genes except for DQ4 found in Asians. Because of that, I only tested my children who were symptomatic. I'm of the general opinion that gluten isn't really good for anyone ... but for some of us it's worse than for others.

[Yenni]

But doesn't gluten harm a non-celiak gluten intolerant person still? I am not sure I see the difference there. Seems no matter what genes you have (celiak or non-celiak) gluten still is harmful.

I am a little with Carla about Gluten not being that great for anyone, but people do not handle that opinion very well I have noticed.

I don't like the doctor she has seen.

I have given up on trying to convince my family about getting tested. My mom and aunt both have sumptoms and it seems my brother has them too (has also has ADHD and it seems to be common with with gluten intolerance having that). I have tried to explain to them about possebly feeling better and stuff, but they don't want to hear about it. I feel I can't do more than what I have done. Now it is up to them.

[CarlaB]

But doesn't gluten harm a non-celiak gluten intolerant person still? I am not sure I see the difference there. Seems no matter what genes you have (celiak or non-celiak) gluten still is harmful.

I am a little with Carla about Gluten not being that great for anyone, but people do not handle that opinion very well I have noticed.

I don't like the doctor she has seen.

I have given up on trying to convince my family about getting tested. My mom and aunt both have sumptoms and it seems my brother has them too (has also has ADHD and it seems to be common with with gluten intolerance having that). I have tried to explain to them about possebly feeling better and stuff, but they don't want to hear about it. I feel I can't do more than what I have done. Now it is up to them.

My doctor? I was tested by Enterolab after all the celiac testing came out negative. I'm not being treated by a doctor for my gluten intolerance.

I based my statement on having family members tested on the fact that if we don't have the celiac genes, we literally all have the gluten intolerant genes unless we're of Asian descent. So, since almost all Americans, except those of Asian descent, have gluten intolerant or celiac genes, and only a certain number of us have a problem with it, I think the genes are irrelevant in the case of gluten sensitivity -- we all have them!!

Of course, I think family members should be tested in the case of celiac.

Gluten intolerance apparently can cause some kind of damage. I seem to be digesting my food more completely.

[Yenni]

My doctor? I was tested by Enterolab after all the celiac testing came out negative. I'm not being treated by a doctor for my gluten intolerance.

I based my statement on having family members tested on the fact that if we don't have the celiac genes, we literally all have the gluten intolerant genes unless we're of Asian descent. So, since almost all Americans, except those of Asian descent, have gluten intolerant or celiac genes, and only a certain number of us have a problem with it, I think the genes are irrelevant in the case of gluten sensitivity -- we all have them!!

Of course, I think family members should be tested in the case of celiac.

Gluten intolerance apparently can cause some kind of damage. I seem to be digesting my food more completely.

No, I meant the doctor Karen's sister saw.

There was a doctor that was speaking on Dr Fine's seminar. He said he was gluten intolerant. He hadn't been able to get any children because his sperms wouldn't swim. 5 years after he stopped with gluten he now is becoming a father (of he probably is a father by now). He said it was because of the gluten, so it sounds like eating gluten and being gluten intolerant still do damage to me.

[ArtGirl]

Gluten intolerance apparently can cause some kind of damage.

I think so. I am *only" gluten intolerant and, based on Enterolab result of no malabsorbtion problem, I'm assuming that I have no villi damage. However, I have had fibromyalgia (no problem now), do have hypoglycemia, and possibly Sjogren's(self-diagnosed), and am overweight. So I think that the intolerant group can still suffer the consequences of keeping the immune system compromised by continual autoimmune response to gluten. Well, that's my theory, anyway.

[jacqui]

OK, I know someone can help. I can't belive I am still confused about this.

EnteroLab told me that I am both genes gluten intolerant, do not have celiac genes. I have been gluten free since I found out(Oct.'06) and feel MUCH better. So, I told my sister to get tested(mother died colon cancer at age 49)so she (skeptically)went to Dr. in Dallas. test neg. for Celiac. He (Dr.) told her that if she was gluten intolerant, and she continued to eat gluten that she could not "get" Celiac later on. (He didn't tell her she may test neg. now, but could test pos. later) She said that he was a Dr. that does not support Dr. Fine. So, since seeing her Dr., she thinks it is not even important to get a stool test done, that it is not important if she is gluten intolerant or not! Am I wrong in thinking that if someone is gluten intolerant keeps ingesting gluten, that, even if they "feel fine"(with osteopenia and hypothyroidism)their health will delcine, that the gluten will cause them problems?? In the end, she is an adult and I cannot make her do anything...

thanks for reading..

Sorry, but did you receive my message - I am new to using a forum and sometimes my stuff goes through and sometimes it doesn't...

[KarenLee]

Sorry, but did you receive my message - I am new to using a forum and sometimes my stuff goes through and sometimes it doesn't...

Yes, I did. Sorry, I am on the computer more during the day than at night...

Thanks again

[Rachel--24]

.

EnteroLab told me that I am both genes gluten intolerant, do not have celiac genes. I have been gluten free since I found out(Oct.'06) and feel MUCH better. So, I told my sister to get tested(mother died colon cancer at age 49)so she (skeptically)went to Dr. in Dallas. test neg. for Celiac. He (Dr.) told her that if she was gluten intolerant, and she continued to eat gluten that she could not "get" Celiac later on.

This Dr. is correct.

If your sister doesnt have a Celiac gene....it is very unlikely she will ever develop Celiac. Only about 1% of Celiacs dont carry a main Celiac gene.

In my opinion if you have "gluten sensitive" genes (non-celiac).....you do not have to get everyone in your family tested for Celiac. Only if there is a diagnosis of Celiac Disease should all family members be tested.

Enterolabs gluten sensitive genes are totally seperate....people do not "end" up with Celiac unless they are genetically susceptible.

I am skeptical of Enterolab's "gluten sensitive" genes. Personally, I dont think they mean much with regards to whether or not you develop sensitivity to gluten. Other factors play a bigger role in my opinion.

Celiac is a genetic Disease so there is no reason to test family members for it if the genetics are not there.

Ultimately, if gluten makes you feel bad....you should not eat it.

[Rachel--24]

I am *only" gluten intolerant and, based on Enterolab result of no malabsorbtion problem, I'm assuming that I have no villi damage.

Enterolab's malabsorption test isnt a true indicator of villi damage. You can have severe malabsorption and yet have NO villi damage. They are two seperate issues.

Malabsorption can be caused by many factors....whereas villi damage is specific to Celiac and happens as a result of the immune systems response to gluten. This is the genetic aspect....villi damage = Celiac Disease.

For example.....I do not carry Celiac genes...yet my Enterolab malabsorption score was 912. This is almost severe...but it doesnt mean I have Celiac. In fact my biopsy was perfectly normal. The malabsorption doesnt have to be directly related to gluten either...in some cases it is.....and in some cases it isnt.

[Yenni]

So I think I missunderstood this. I was thinking that she needed to get tested but those tests only pick up Celiac anyways. She could carry a celiac gene still though, getting it from a parent while you didn't get it. But maybe she should get tested by EnteroLab instead then maybe.

I think I am confused about the differences between Celiac and non-celiak gluten intolerance too. I know they are different and the non-celiac sometimes isn't as sever, but aren't there people with non-celiak gluten intolerance that has more syptoms and problems than some Celiacs?

Seems some people want to remove the differences and just look at these two as the same on a continum (sp?). Others think they are very different.

Oh well. I am just being slow.

[gfpaperdoll]

Karen Lee,

I have two DQ1 genes - the gluten sensitive genes. My mother died of colon cancer when she was about 75.

Having two DQ1 genes is very bad - you get all the intestinal stuff which can be diarrhea or constipation and you also get the neurological stuff, and you get the other autoimmune diseases. One of my sisters has rheumatoid arthritis among other problems, she knows she has it but does not want to go on the diet. My other sister tested positive thru a blood test at her doctors & also thru Enterolab & she also has two DQ1 genes. She had the "IBS" (I Be Stumped) diagnosis from another doctor. She has been gluten-free two months now & the IBS is gone, she is emotionally feeling much better & now has loads of energy. I also have her taking a B12 everyday. She is 52 & a retired radiology tech.

I have a friend that had a positive biopsy and then also tested positive thru Enterolab with two DQ1 genes. I think that most people that test positive thru biopsy do not test their genes, so it is my opinion that you can say that you have gluten intolerance until your villi become damaged, then you can say you have celiac disease.

This friend also had the intestinal problems and still has severe osteoporosis.

If you are unlucky enough to get colon cancer before the villi atrophy or maybe they did already & no one checked, you can say that you "just" have gluten intolerance.

If you think you cannot get villi damage with the gluten intolerance genes, I think you are wrong. Maybe the thing is with us gluten intolerant people it really does not matter because by the time we get villi atorphy we are so sick with other stuff that we do not live much longer anyway. I mean if you have colon cancer what doctor in the world is going to be concerned about flattened villi? NONE of them is the answer.

[Rachel--24]

so it is my opinion that you can say that you have gluten intolerance until your villi become damaged, then you can say you have celiac disease.

Yes but there isnt any scientific evidence to back this up. People who dont have Celiac genes......no matter how sick they are....generally do not have positive biopsies. Only 1% of diagnosed Celiacs dont have DQ2 or DQ8.

When you compare that to the amount of people who are coming back as "gluten intolerant" through Enterolab testing...(and alot of people who do the test have been biopsied)....the numbers dont match up. If all of these people were at risk for damaged villi....there would be a whole lot more diagnosed Celiacs without a main gene.

Its not because the people without the genes are not tested...its because the people without the gene dont get Celiac.....except for that small percentage.

Also....from my time spent on this board....I can tell you that nearly everyone who is diagnosed gluten intolerant (non-celiac)....does not regain their health from the gluten-free diet alone. Eliminating gluten resolves some symptoms...it does help alot....but it does not resolve the health issues in the same way it does for a large amount of diagnosed Celiacs.

I believe this is because the gluten intolerance in non-celiacs comes from having a leaky gut. Anyone can develop leaky gut and for any number of reasons. Naturally in this case eliminating gluten will bring immediatte resolution of symptoms brought on by having gluten leaking out of the gut and into the bloodstream. However, this doesnt seem to resolve the overall health problems for individuals who do not carry Celiac genes.

Also, this group of people tends to have a growing list of other food intolerances....not just gluten....this is also indicative of Leaky Gut Syndrome. You can have Leaky Gut and every symptom that comes with it.....(gluten intolerance is a given).....your reactions can be very severe...yet the illness is not caused by Celiac Disease and the villi will stay intact....even if the symptoms are horrendous.

If you look at my Enterolab results....particulary the tTG and malabsorption...would you suspect damaged villi??

Positive IgA

Positive tTG

Gluten Intolerance genes DQ1 and DQ3

Malabsorption score 912

My biospy was "text book" perfect. I had nearly every symtpom across the board.....plus a 25 lb. drop in weight. Loose stools, undigested food, neurological symptoms, etc... I was VERY sick....if gluten intolerance leads to damaged villi...then mine should have been damaged. They werent. I'm quite certain if I carried either DQ2 or DQ8....it would be a different story.

I know of only one person on this board who had a positive biopsy without a Celiac gene.

I'm just going by what is known about Celiac at this point....and what "defines" Celiac is damaged villi.....and it is clearly genetic. The 2 main genes involved in Celiac are DQ2 and DQ8...except for a tiny percentage who seem to have DQ1.

Then there is Enterolab who has a huge amount of the population "at risk" for Celiac.....its just not "proven" at this time and there is no evidence to support that people who dont have the genes can get damaged villi if they dont follow the diet. Can they get sick? Yes. Can they get damaged villi? Not likely.

[CMCM]

I've been doing a lot of googling and reading tonight. A couple of things that I found interesting.....studies showed that with identical twins (hence identical gene markers), if one of them gets celiac disease, the other twin has a 70% chance of getting it, but then again, may not. A few people have gotten diagnosed celiac disease WITHOUT any of the presdisposing genes. The articles said obviously other, unknown factors came into play.

Will they ever know a lot about this??? Sigh...

[gfpaperdoll]

To the person that has DQ1 & DQ3, I think that if you will do some research that you will find that double DQ1 is worse than having only a DQ1 & a DQ3.

I repeat if you have double DQ1 you can get villi atrophy & I think it is more than 1% of the double DQ1 people..

And if you happen to be that 1% of anything it becomes 100% to you. Those percentages mean almost nothing.

My point is that if you have double DQ1 it is equal to or worse than a DQ2 & a DQ8.

[CMCM]

We just tested my mom (who has diagnosed celiac disease) and she turned up with two copies of the DQ2-0201 celiac gene. She's what someone referred to as a "super-celiac".

I queried Enterolab about this and also did some other research, and apparently this is the worst combination....greater likelihood of getting celiac disease, and possibility of greater severity of symptoms. That was certain true with my mom....she told me up until her mid 40's she had G.I. and other symptoms very much like mine (I have one celiac and one gluten sensitive gene). However, once my mom's celiac disease was triggered (seemed to have happened right after a hysterectomy), boy did she get sick! She nearly died before one smart doctor (this was in 1969) figured out her problem!