0
KarenLee

Gluten Intolerant, Not Celiac

Rate this topic

Recommended Posts

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.. :rolleyes:

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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. ;):blink:

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.

Share this post


Link to post
Share on other sites
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. ;):blink:

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. ;)

Share this post


Link to post
Share on other sites
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. :P

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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.

Share this post


Link to post
Share on other sites
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.. :rolleyes:

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...

Share this post


Link to post
Share on other sites
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 :rolleyes:

Share this post


Link to post
Share on other sites
.

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.

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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... :(

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   7 Members, 0 Anonymous, 206 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/23/2018 - If you’re looking for a great gluten-free Mexican-style favorite that is sure to be a big hit at dinner or at your next potluck, try these green chili enchiladas with roasted cauliflower. The recipe calls for chicken, but they are just as delicious when made vegetarian using just the roasted cauliflower. Either way, these enchiladas will disappear fast. Roasted cauliflower gives these green chili chicken enchiladas a deep, smokey flavor that diners are sure to love.
    Ingredients:
    2 cans gluten-free green chili enchilada sauce (I use Hatch brand) 1 small head cauliflower, roasted and chopped 6 ounces chicken meat, browned ½ cup cotija cheese, crumbled ½ cup queso fresco, diced 1 medium onion, diced ⅓ cup green onions, minced ¼ cup radishes, sliced 1 tablespoon cooking oil 1 cup chopped cabbage, for serving ½ cup sliced cherry or grape tomatoes, for serving ¼ cup cilantro, chopped 1 dozen fresh corn tortillas  ⅔ cup oil, for softening tortillas 1 large avocado, cut into small chunks Note: For a tasty vegetarian version, just omit the chicken, double the roasted cauliflower, and prepare according to directions.
    Directions:
    Heat 1 tablespoon oil in a cast iron or ovenproof pan until hot.
    Add chicken and brown lightly on both sides. 
    Remove chicken to paper towels to cool.
     
    Cut cauliflower into small pieces and place in the oiled pan.
    Roast in oven at 350F until browned on both sides.
    Remove from the oven when tender. 
    Allow roasted cauliflower to cool.
    Chop cauliflower, or break into small pieces and set aside.
    Chop cooled chicken and set aside.
    Heat 1 inch of cooking oil in a small frying pan.
    When oil is hot, use a spatula to submerge a tortilla in the oil and leave only long enough to soften, about 10 seconds or so. 
    Remove soft tortilla to a paper towel and repeat with remaining tortillas.
    Pour enough enchilada sauce to coat the bottom of a large casserole pan.
    Dunk a tortilla into the sauce and cover both sides. Add more sauce as needed.
    Fill each tortilla with bits of chicken, cauliflower, onion, and queso fresco, and roll into shape.
    When pan is full of rolled enchiladas, top with remaining sauce.
    Cook at 350F until sauce bubbles.
    Remove and top with fresh cotija cheese and scallions.
    Serve with rice, beans, and cabbage, and garnish with avocado, cilantro, and sliced grape tomatoes.

     

    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:
     

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au