Question For Non-Celiac Gluten Intolerants

[Aly1]

In the current issue of Consumer Reports onHealth there is a section "Should you avoid gluten?" in which I read the following statement:

"While gluten intolerance can be unpleasant, it's not harmful to long-term health and isn't as serious as celiac disease."

I am new to the NCGI diagnosis and gluten-free diet, and I have major health complications. Which should I glean from the above statement 1) Consumer Reports staff have no idea what they're talking about or 2) I probably have something else going on in addition to gluten issues (or was false negative for celiac).

Would love some input from the most experienced members of this board who have lived with GI and it's impact...

[pricklypear1971]

I'd go with 1.

What few people address (and this is a flaw in how we dx ailments) is that the testing for Celiac is not perfect, and there isn't a test at all for NCGI.

The medical community really doesn't know WHAT NCGI IS, or what it DOES.

For some reason, with NCGI, there is the thought that gluten makes you sick by ingestion but causes no harm. That just seems odd to me (and that's my anecdotal opinion).

I'm sure alot of people will disagree with me, but oh well.

As far as my dx, who knows. My ND thinks I'm Celiac but there are plenty of docs who would say I'm not.... Perhaps I'm just mental and have amazing control over my skin - so if I stop eating gluten and reduce iodine my bulbous rash is mentally transported away????

Personally, I like this article to explain Celiac v. NCGI:

Open Original Shared Link

[Aly1]

Hmmm, one part of that article says "Unlike celiac disease, gluten sensitivity hasn't been linked to intestine damage and long-term health problems". I've done tons of reading and the latter part of that statement is contrary to what I thought I'd learned... I guess I'm trying to find out from people who have Lived it, how bad it can be, and whether you think that's an accurate statement...

[Roda]

I guess you could call my oldest son NCGI. He has had negative blood work several times and had a negative biopsy. We decided to trial him gluten free to see if it made a difference.

Symptoms prior to gluten free: chronic constipation since birth(went down a long road with mineral oil, fleets enemas, apple juice and miralax), stomach pain/gas/bloating, nausea, slowed/stalled growth.

Since gluten free(end of Aug. 2011): all symptoms have disappeared and he has gained 6 lbs. and has grown about 1/2" so far.

He did eat some gluten over Christmas break to see what would happen. He didn't get a bad reaction, but rather mild stomach aches. He only ate it for three days though. If we would have continued it longer we might have noticed more symptoms. He has decided to stay gluten free. He likes the changes(for the better) that has happened/happening. We had our follow up with the GI just on Monday. She was impressed with his weight gain and growth. She says it is hard to diagnose kids like him with celiac, but acknowledges that he is better gluten free and to continue with it. I wonder though if she would be as open if his brother and I already didn't have celiac. It really doesn't matter, she is supporting my decision and is on board.

[pricklypear1971]

Hmmm, one part of that article says "Unlike celiac disease, gluten sensitivity hasn't been linked to intestine damage and long-term health problems". I've done tons of reading and the latter part of that statement is contrary to what I thought I'd learned... I guess I'm trying to find out from people who have Lived it, how bad it can be, and whether you think that's an accurate statement...

There is a study about serological + but biopsy - people going gluten-free and seeing benefit. I posted a link here a whole ago. I'll try to find it.

One thing to remember is that you can have "damage" to your villi/intestines and not be called Celiac. Celiac is a particular type and degree of damage (this is best explained by someone else). So, you can be blood -, biopsy -, but STILL HAVE DAMAGE AND RESPOND TO A gluten-free DIET. Or, any one of several combos I'm sure and still respond to a gluten-free diet.

I know you want someone to come out and give you their experience on your thread, but if you read between the lines on this forum (or sometimes its stated outright) you will find many, many cases of exactly what you are looking for - already said. It can be as bad or worse as dx'ed "Celiac". It can also be much milder (or perceived to be milder) just like some Celiacs have fewer associated symptoms and issues.

I am on my phone so I have limited ability to scroll up and look at your first post and readdress questions. Sorry.

Technically, Fasano or Greene would call me NCGI since I haven't been tested or biopsied. So in my opinion, NCGI can ruin your life. It can cause your skin to bubble up, your hair to fall out from vitamin deficiencies, your brain not to work, your hands to not work, your butt to get constipated, your joints to hurt, your muscles have no stamina, your heart to have irregular rhythms, your thyroid to stop working, and overall its depressing. Is that the kind of statement you are looking for?

Of course, it can't be proven its gluten since I'm "NCGI" (and refuse to back in gluten for a test because I'm afraid my skin will boil up and fall off my body and my brain will stop working).

So no, I don't think Consumer Reports is accurate.

[Aly1]

Yeah I think that's what I want to hear . I've read so much on this board but honestly never paid much mind to whether a person was celiac or NCGI - if gluten was bad for them I believed it, in that context the DX wasn't very important.

I think today I am really second guessing myself because I put my 2.5 yo daughter through a rough blood test yesterday to rule out celiac, based on my own gluten issues (I tested negative) and her having vague symptoms of being tiny (5th percentile), pasty/pale and dark circles under her eyes since starting solids, occasional/sporadic loose stools and just the fact that she seems to really take after me, sharing my blood sugar problems... I wanted to rule out celiac before having her go gluten-free, but I didn't imagine she would have such a bad experience with the blood draw. So today I was having breakfast, feeling guilty and doubting myself when I read that consumer reports comment and it's set off a storm in me.

If its true that NCGI does not result in major health issues, then I have Not found the cause of my health problems (including neuropathy that's left me in a wheelchair). Since removing gluten i now am sensitized to it and get sick if i have it, but that in and of itself does not mean definitively its the cause. Which leads me to think, if my health issues and all thats happened to me over the past 10 yrs are not caused by gluten then I have just hurt my child unnecessarily and that sits like a pit in my stomach.

So I am just looking for reassurance that non celiac GI DOES cause major problems and It made sense to have her tested if I'm having issues with gluten...

[pricklypear1971]

Yeah I think that's what I want to hear . I've read so much on this board but honestly never paid much mind to whether a person was celiac or NCGI - if gluten was bad for them I believed it, in that context the DX wasn't very important.

I think today I am really second guessing myself because I put my 2.5 yo daughter through a rough blood test yesterday to rule out celiac, based on my own gluten issues (I tested negative) and her having vague symptoms of being tiny (5th percentile), pasty/pale and dark circles under her eyes since starting solids, occasional/sporadic loose stools and just the fact that she seems to really take after me, sharing my blood sugar problems... I wanted to rule out celiac before having her go gluten-free, but I didn't imagine she would have such a bad experience with the blood draw. So today I was having breakfast, feeling guilty and doubting myself when I read that consumer reports comment and it's set off a storm in me.

If its true that NCGI does not result in major health issues, then I have Not found the cause of my health problems (including neuropathy that's left me in a wheelchair). Since removing gluten i now am sensitized to it and get sick if i have it, but that in and of itself does not mean definitively its the cause. Which leads me to think, if my health issues and all thats happened to me over the past 10 yrs are not caused by gluten then I have just hurt my child unnecessarily and that sits like a pit in my stomach.

So I am just looking for reassurance that non celiac GI DOES cause major problems and It made sense to have her tested if I'm having issues with gluten...

I'm sorry you and your daughter had such a hard time. Parental guilt sucks.

Don't beat yourself up. You absolutely did the right thing by having her tested...and she will forgive you.

One thing you must do on the gluten-free route is to not give up. If you see health changes going gluten-free you're on to something. You may have other intolerances or conditions, too, but if you respond + to removing gluten you're probably on to something.

[Takala]

There are a great many undiagnosed celiacs who gave up on getting the medical profession to recognize that they really did have an auto immune disease process going on which could be relieved by giving up gluten, regardless of official testing status. They would fall into the category of 'non celiac gluten intolerance' and it appears CR Health has made the error of not acknowledging them.

[UKGail]

I have to admit that I get a bit annoyed about anyone, and especially doctors, being precious about whether someone is technically celiac or not.

With a significant level of negative blood tests (10% in the experience of one celiac specialist), which are later confirmed by biopsy, and with the biopsy itself a bit of a crapshoot as it is acknowledged that the areas of damaged villi can be patchy, or only below the area to where the endoscope can reach, I think the only thing a doctor should say is that they were not able to confirm celiac at this time.

They should then go on to say that the failure to confirm via biopsy does not completely rule celiac out, and that a trial gluten free diet would now be a useful aid to diagnosis and possible recovery.

There seems to be a fair amount of interesting research going on into other proteins and other blood tests which might eventually shed some more light on the topic of gluten sensitivity, but that is not likely to be fast enough to help anyone suffering today.

Ali, I know what you mean about the blood test for children. I felt awful when I put my small 9 year old with tiny veins through it, and even worse when it came back negative. Fast forward 6 years and her indicators are now starting to accumulate. However she is a teenager I cannot simply just put her on a gluten free diet. It is something she will have to choose for herself. All I can do is try to provide an example, and give her the information when she is in the mood to listen.

Your daughter is still very young, and I would trust your instincts on this, after doing all the available testing of course.

[Aly1]

Thanks for the support, its hard to navigate all of this and separate logic and emotion, especially where my daughter is concerned. It sucks to have a medical problem where researchers are only just starting to figure out what's what. Comments like the one in CR just compounds the problem of people not taking gluten and it's effects seriously. Sigh.

[UKGail]

I completely understand.

Its hard for anyone to understand unless they are walking in your shoes. Only after seeing me flat on my back after a quick visit to the bagel shop (for my daughter not for me) did my husband begin to think that maybe I wasn't being overly cautious about the dangers of airborne gluten, which seems to affect me, but doesn't affect my newly diagnosed friend who seems immune to cross-contamination.

[Guest flowermom6117]

I completely understand where you are coming from, yesterday I spent the hour drive home from the G.I. in tears. Last week we put our 4 yr old daugter through all the testing, only to be told everything was negitive. No one in our family has celiac so my husband is not even supporting my decision to make her gluten free.

Good news is I started the diet anyway and am already seeing improvements, and can even tell if he gives her gluten when I'm at work.

All I can say is follow your heart. I truely beleave a mother knows whats best. I wish you good luck.

[Aly1]

UKGail:

I can't believe you have to worry about airborne contamination! I would fine that a bit overwhelming I confess. As for your newly diagnosed friend, you never know how she'll be reacting down the road - I've seen many people saying how overly sensitive their reactions get after a few months gluten-free, and that's been the case for me too.

Flowermom6117:

Thank you so much for your support and sharing your story. I have calmed down a lot since her blood test (her tiny arm is black and blue from it, I am keeping it covered because I start thinking all over again!). I asked myself what I would do differently if I could "erase" the test and decide again. I came to the same decision that I should test her now, so hat helped put things into prospective. I'm trying to protect her from what's happened to me and the best way to do that is take her gluten-free now and see how she does. And since I know I would never intentionally gluten her (if she does show reactions) in order to get a test result down the road, I have to test her now before she starts the diet. I knew all these things before her blood test but it was so awful that it shook my resolve. I am pretty much assuming she'll come back negative, but I had to do my part and get her tested nonetheless.

Good for you for going ahead despite your husband's opinion to the contrary! And I'm so glad you're seeing improvements too. Let me know how things go, I will be thinking of your little one .

[mushroom]

I'm sorry your daughter had such a rough time with the blood test. But the bruising will heal and it was done with the best of intentions. Don't beat yourself up over it.

There are so many of us on here who honestly do not know if they are celiac disease or NCGI, and I am one of them. Do I wish someone had thought to test me and that I had known before gluten free about celiac? Yes, of course I do. Would it have made any difference to my gluten consumption if I found out I was NCGI? Not a crumb!! I believe most of us do believe we are celiacs and it is just the inability of the medical profession to identify us. I have two other autoimmune diseases (hypothyroidism and psoriatic arthritis) which increases the likelihood of my having celiac disease and I have a doctor-diagnosed niece with her self-diagnosed mother (my sister)..

At any rate, all my posts at least come from the point of view that I have celiac, and I don't think you will find anyone here giving advice to celiacs based on being non-celiac gluten intolerant unless they clearly state they are doing so. This is a celiac forum, after all.

Best wishes for your daughter's health.

[Kamma]

The Consumer Report isn't accurate at all! Just to counteract it, here's an article I picked up from the Irish Coeliac Board that is talking about a new study into mon- celiac gluten intolerance. I'll pull a quote from it but its worthwhile to go and read the article fully as it contains a quick reference guide for the symptoms broken down for wheat allergy, gluten intolerance and celiac:

"Lisa Rayburn felt dizzy, bloated and exhausted. Wynn Avocette suffered migraines and body aches. Stephanie Meade's 4-year-old daughter had constipation and threw temper tantrums.

Some people claim that eating gluten products can cause health problems like body aches and chronic fatigue -- and even some behavioral problems in children. WSJ's Melinda Beck talks with Kelsey Hubbard about a new study that sheds light on what may be going on.

All three tested negative for celiac disease, a severe intolerance to gluten, a protein found in wheat and other grains. But after their doctors ruled out other causes, all three adults did their own research and cut gluten—and saw the symptoms subside.

A new study in the journal BMC Medicine may shed some light on why. It shows gluten can set off a distinct reaction in the intestines and the immune system, even in people who don't have celiac disease.

"For the first time, we have scientific evidence that indeed, gluten sensitivity not only exists, but is very different from celiac disease," says lead author Alessio Fasano, medical director of the University of Maryland's Center for Celiac Research."

Continued here: Open Original Shared Link

[pricklypear1971]

The Consumer Report isn't accurate at all! Just to counteract it, here's an article I picked up from the Irish Coeliac Board that is talking about a new study into mon- celiac gluten intolerance. I'll pull a quote from it but its worthwhile to go and read the article fully as it contains a quick reference guide for the symptoms broken down for wheat allergy, gluten intolerance and celiac:

"Lisa Rayburn felt dizzy, bloated and exhausted. Wynn Avocette suffered migraines and body aches. Stephanie Meade's 4-year-old daughter had constipation and threw temper tantrums.

Some people claim that eating gluten products can cause health problems like body aches and chronic fatigue -- and even some behavioral problems in children. WSJ's Melinda Beck talks with Kelsey Hubbard about a new study that sheds light on what may be going on.

All three tested negative for celiac disease, a severe intolerance to gluten, a protein found in wheat and other grains. But after their doctors ruled out other causes, all three adults did their own research and cut gluten

[sreese68]

I have to admit that I get a bit annoyed about anyone, and especially doctors, being precious about whether someone is technically celiac or not.

With a significant level of negative blood tests (10% in the experience of one celiac specialist), which are later confirmed by biopsy, and with the biopsy itself a bit of a crapshoot as it is acknowledged that the areas of damaged villi can be patchy, or only below the area to where the endoscope can reach, I think the only thing a doctor should say is that they were not able to confirm celiac at this time.

They should then go on to say that the failure to confirm via biopsy does not completely rule celiac out, and that a trial gluten free diet would now be a useful aid to diagnosis and possible recovery.

I totally agree with the above. I think if someone responses well to the diet, it's hard to prove they are NOT celiac since current testing is so poor.

I had - bloodwork. GI was ignorant of celiac and refused scope. Neurologist insisted I do a gluten-free trial since "I see a lot of false negatives." I reintroduced gluten after 2 months gluten-free, wrote all my unexpected and awful symptoms down, and showed my neuro. Asked him if I should get a biopsy done to prove celiac. He said that it wasn't necessary. Said biopsies often miss the area of damage: like looking for rust on a car but only looking at the hood and not lifting the hood to look underneath. He said in his opinion I clearly had celiac, and he put it in my medical records that way.

Celiac left with me a number of food intolerances. I can't imagine I'd have those if my stomach/intestines weren't messed up. And it took 8 months gluten-free for my brain to turn back on and my emotions to wake back up. A lot of people have noticed a big difference in me.

All this to say I consider myself celiac instead of intolerant even though I didn't go the traditional route for a diagnosis.

[domesticactivist]

There is a study from Fasano et al Open Original Shared Link

that talks about how Gluten Sensitivity is different from Celiac Disease. Just because the types of damage done may be different doesn't make GS any less serious.

I've been doing a gluten challenge for nearly two months now so I can get tested for celiac. I'm actually at my breaking point - message me if you want my journal of the whole thing. While I get some GI stuff, the scariest symptoms I have are neurological and mental. Whether I test positive for celiac or not, that's not something I want to mess around with any more.

Here is an excerpt from the article mentioned above with a few of my thoughts/questions:

"Patients with GS do not present significant autoimmune or allergic comorbidities, and, as we also have shown here, the serology for common autoantibodies, including anti-tTG IgA, is negative. Interestingly, AGA IgA and IgG were positive in almost 50% of cases. Similarly, higher than expected titers of AGAs, signs and symptoms associated with non-celiac disease gluten sensitivity, have also been reported for schizophrenia [39] and autism spectrum disorders [40]. While in celiac disease there is a strong genetic association with the class II MHC haplotype, with about 95% of patients carrying HLA-DQ2 and the remaining 5% carrying HLA-DQ8, we have shown that only about 50% of patients with GS carry HLADQ2 and/or HLA-DQ8, a percentage slightly higher than that in the general population. This suggests a reduced level of involvement of MHC - dependentadaptive immune responses in GS relative to celiac disease. We have further shown that the GS mucosa contains increased numbers of CD3+IELs , even though these numbers were significantly lower than those in active celiac disease patients in the context of relatively conserved villous architecture, corresponding to the 0 and 1 stages of the Marsh classification"

I grasp at things because my son does not have a formal diagnosis (we went gluten free prior to learning about testing). He did have elevated IgG (we don't know about IgA as it wasn't tested prior to our discontinuing gluten) and does have rheumatoid autoimmune presentation and allergy issues, plus the genetics and leaky gut symptoms (and old ELISA test showing IgG for practically everything he ate, retest after a year of GAPS and gluten-free shows no IgG or IgA for most things). It seems that points us very much in the celiac disease rather than GS direction for him.

I'm also curious about the GS mucosa having increased CD3+IELs and falling between 0 and 1 on the Marsh scale. I didn't note how long ago this was and whether follow up was done, but sometimes I see things like this and wonder if those folks with the increased CD3+IELs weren't in early stages of celiac disease? I imagine after the study these folks stopped eating gluten rather than continuing on for years to see if they would develop classic celiac disease.

[Juliebove]

My daughter has an IgG allergy to wheat. Used to be gluten but she outgrew it. But when she did have the allergy she would get a rash and would get sick to her stomach from eating gluten. This could last for a couple of days. She also couldn't come into contact with gluten. But it also affected her life in many ways. The school thought she had ADD. Nope. It was the gluten and the other allergens. She could not pay attention in school because she was so miserable. Only she didn't know she was miserable because she had been that way her entire life.

I can relate. In my case the culprit was eggs. I used to be sick all the time. My parents knew it but back then apparently didn't know what to do about it. They just thought that was the way I was. And even now they really don't get it. My mom also has an IgG allergy to eggs but still eats them then complains when she is sick.

Because the type of allergies we have gives a delayed reaction it is difficult for us to know what the culprit is. I only know because when my daughter was diagnosed with the egg allergy (among other things) I gave up eggs (and everything else she was allergic to). This was just easier for me to do and I think on some level it made her feel better to know that I was eating as she was.

Then one day while she was in school, I went to the store with the salad bar. I bought egg salad. I ate some and the next day I got very sick to my stomach. I think it was somewhere around 12 to 18 hours later. I really can't remember the exact time frame now. I thought maybe it was food poisoning but really didn't know for sure. So I ate the rest of the egg salad and 2 hours later became ill.

Some time went by. I had bought a dozen eggs for my husband. He goes through periods of time where he eats tons of eggs and then doesn't. Well he didn't eat these. So I cooked them, made egg salad and ate some. Again got sick at about the same time period the next day. Still wasn't sure. Then it was Thanksgiving. I ate 1/2 an egg salad sandwich before going to my parent's house. 2 hours later I was sick enough that not only could I not help fix dinner, but I couldn't eat any!

I knew then for sure. There was something about eggs and it wasn't good. Then later it was confirmed with an IgG allergy test. I was also allergic to dairy and almonds. So you see... I was less ill because I wasn't eating eggs but I was eating a lot of almonds!

So now... Yes we will get sick if we eat what we are allergic to. And yes many people call what we have an intolerance because it isn't an IgE allergy. Yes, an IgE allergy can kill. And yes celiac can kill. Not instantly like an IgE allergy can. But it does damage to the body. And that damage can be permanent. I am not going to have permanent damage if I eat an egg. I am going to be very miserable and I will be cursing myself for days afterwards if I ever allow that to happen. My reaction to eggs is soooo severe that I will not eat anything if there is any doubt in my mind that there could be so much as cross contamination going on.

But when I read stuff like what you posted it does make me mad. I read something similar from Jessica Simpson. This was back when she was doing commercials for a pizza place. Word got out that she had a dairy allergy. She said that she did not. It was an intolerance. That made me angry. If you have an intolerance like that, you know you shouldn't be eating it.

That being said, I also know people who do have intolerances and do eat that which they shouldn't. Yes, I already mentioned my mom but there are others. And I really just do not get that. Not at all. They will make excuses. One woman said her husband ate the pastry at the catered event at work and didn't know it would have a cream filling. I was like... Hello! Pastry! Chances are it has dairy in it! Same woman had to take her daughter to the ER because she said the chicken nuggets she got her at McDonald's must have had egg in them. This girl not only should not have egg, but dairy, wheat, gluten, soy and a whole slew of other things. Um... Hello! If you don't know what's in it, you don't EAT it! Same woman said they couldn't follow their diet because it was a holiday weekend. Stuff like this makes my blood boil.

We eat out. We are limited to where we can go and what we can eat. We have had to decline food related invitations. We know how to take our own food. We know how to get safe food from the grocery store even if it is just some produce and a bottle of water to wash it with to tide us over.

But yeah. Stuff like that makes me really mad. And it is obviously written by people who either don't have food intolerances or who don't have ones as severe as I do.

Oh and another thing! One year I was put in charge of all the food allergy kids in my daughter's class. The teacher failed to tell me that one boy was allergic to corn and some yellow dye. We lucked out on the dye thing because I bought candies to decorate things with from the health food store and they used things like beets and spinach to dye. But the corn? Alas it was in some of the food I brought for my daughter. The teacher then said it was okay for me to give it to the boy because his only reaction was a skin rash. I was like... Um... Yeah. And you want me to give him a skin rash? I don't think so!

[domesticactivist]

Hello! If you don't know what's in it, you don't EAT it!

Words to live by!

One year I was put in charge of all the food allergy kids in my daughter's class. The teacher failed to tell me that one boy was allergic to corn and some yellow dye. We lucked out on the dye thing because I bought candies to decorate things with from the health food store and they used things like beets and spinach to dye. But the corn? Alas it was in some of the food I brought for my daughter. The teacher then said it was okay for me to give it to the boy because his only reaction was a skin rash. I was like... Um... Yeah. And you want me to give him a skin rash? I don't think so!

This is the crap that makes me SOOOOOOO mad!!!!!!!

I gave up eggs (and everything else she was allergic to). This was just easier for me to do and I think on some level it made her feel better to know that I was eating as she was.

We found the same thing. When I did my gluten challenge, not only did I accidentally gluten my son a couple times, but he also started having more trouble with the diet... thinking about the sadness of having to give up foods more. We'll all be happy to be back on the same diet again.

[Kamma]

That's the best news I've heard in 7 months!

You might also welcome the news that on the UK Coeliac website they specifically state that:

"Research has shown that some people with celiac disease who do not have obivious gut symptoms may not produce antibodies for transgluiminase 2 (TG2)...Antibodies for transglutaminase 3 (TG3) have been found in people with DH and antibodies for transglutimanse 6 (TG6) have been found in people with neurological manifestations. However, tests for Tg3 and TG6 antibodies are not currently available."

[domesticactivist]

You might also welcome the news that on the UK Coeliac website they specifically state that:

"Research has shown that some people with celiac disease who do not have obivious gut symptoms may not produce antibodies for transgluiminase 2 (TG2)...Antibodies for transglutaminase 3 (TG3) have been found in people with DH and antibodies for transglutimanse 6 (TG6) have been found in people with neurological manifestations. However, tests for Tg3 and TG6 antibodies are not currently available."

WOW. So, that begs the question... if tests aren't available, how did they detect the TG3 and TG6. I'd love to get tested for that TG6!!!

[Aly1]

As would I! Except, that would likely require a gluten challenge and I don't think I could make it through that.

[Kamma]

WOW. So, that begs the question... if tests aren't available, how did they detect the TG3 and TG6. I'd love to get tested for that TG6!!!

I'm not sure but I suspect that some of the research was done post mortem and/or the tests that they have used might be too cost prohibitive or in the development stages to be produced large scale.

[Marilyn R]

I think you'll find this recent article from the University of Chicago interesting, and it's a good one to print and take to your pediatrician to help promote celiac awareness.

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