Should We All Be Gluten Free? Undiagnosed Immune Response

[7vNH]

I was struck by a study of the mortality of people diagnosed with celiac disease that also had UC/CD. 68-fold increase compared to non-celiacs! The bottom line is that immune system disfunction is hazardous to your life! We already knew that, but perhaps what we didn't know is how many people have a "hidden" immune response to gluten/gliadin; a response that does NOT manifest in the small intestine (no celiac diagnosis). So, some of us could be eating a diet that includes gluten that is triggering an immune response that doesn't manifest in an obvious way. But since there is an immune response, no mater how minimally it manifests itself, does it, along with UC/CD, raise the mortality risk? The paper, which was written a long time ago (2003) doesn't say. Back then (the follow-up period was 1965-1994), they were doing biopsy to confirm celiac, but people with other gluten sensitivities were not part of the study. Even though it's $460, I might get the Cyrex Array 3 lab done, because giving up gluten is such a PITA, I don't want to do it "for nothing". But if I do have a sensitivity, I think it would be worth changing my diet by excluding things that cause an immune response.

Causes of death in patients with celiac disease in a population-based Swedish cohort.

 

[Justanothercp]

I've never been tested, but when I went Paleo, the difference in my day to day comfort was remarkable.

 

[SarahD]

I've just started reading a book called "The Immune System Recovery Plan: A Doctor's 4-Step Program to Treat Autoimmune Disease" which talks a lot about gluten and immune disregulation. In the past I took gluten out of my diet for several months and when re-introduced I didn't notice any difference in my symptoms. That's not to say it won't help some people, it just didn't help me.

 

[7vNH]

Thanks SarahD and Justanothercp for sharing your experiences. I thought I'd share another experience written in the "Wheat Belly" book:

Is It Celiac Disease or Not? A True Story

Let me tell you about Wendy.

For more than ten years, Wendy struggled unsuccessfully with ulcerative colitis. A thirty-six-year-old grade school tacher and mother of three, she lived with constant cramping, diarrhea, and frequent bleeding, necessitation occasional blood transfusions. She endured several colonoscopies and required the use of three prescription medications to manage her disease, including the hightly toxing methotrexate, a drug also used in cancer treatment and medical abortions.

I met Wendy for an unrelated minor complaint of heart palpitations that proved to be benign, requiring no specific treatment. However, she told me that, because her ulcerative colitis was failing to respond to medications, her gastroenterologist advised colon removal with creation of an ileostomy. This is an artificial orifice for the small intesting (ileum) at the abdominal surface, the sort to which you affix a bag to catch the continually emptying stool.

After hearing Wendy's medical history, I urged her to try wheat elimination. "I really don't know if it's going to work," I told her, "but since you're facing colon removal and ileostomy, I think you should give it a try."

"But why?" she asked. "I've already been tested for celiac and my doctor said I don't have it."

"Yes, I know. But you've got nothing to lose. Try it out for four weeks. You'll know if you're responding."

Wendy was skeptical but agreed to try.

She returned to my office three months later, no ileostomy bag in sight. "What happened?" I asked.

"Well, first I lost thirty-eight pounds." She ran her hand over her abdomen to show me. "And my ulcerative colitis is nearly gone. No more craps and diarrhea. I'm off everything except my Asacol." (Asacol is a derivative of aspirin often used to treat ulcerative colitis.) "I really feal great."

In the year since, Wendy has meticulously avoided wheat and gluten and has also eliminated the Asacol, with no return of symptoms. Cured. Yes, cured. No diarrhea, no bleeding, no cramps, no anemia, no more drugs, no ileostomy.

So if Wendy's colitis tested negative for celiac antibodies, but responded to - indeed, was cured by - wheat gluten elimination, what should we label it? Should we call it antibody-negative celiac disease? Antibody-negative wheat intolerance?

There is great hazard in trying to pidgeonhole conditions such as Wendy's into something like celiac disease. It nearly caused her to lose her colon and suffer the lifelong health difficulties associated with colon removal, not to mention the embarrassment and inconvenience of wearing an ileostomy bag.

There is not yet any neat name to fit conditions such as Wendy's, despite its extraordinary response to the elimination of wheat gluten. Wendy's experience highlights the many unknowns in this world of wheat sensitivities, many of which are as devastating as the cure is simple.

 

[PatrickL]

First of all, to say someone's cured is extremely misleading and reckless. Everything we know about C&C says they cannot be cured.. they may go into remission.

Second of all, no we should not all go gluten-free. It's the most ridiculously overhyped cure-all out there right now. There are countless people that live 90 years eating all the bread they can get their hands on. And for C&C sufferers, there are many who eat wheat and other sources of gluten with no ill side effects.

One personal anecdote does not a solution make. Here's my personal anecdote - I actually tried to go gluten-free since this fall, and had an attack in early January. I went back to eating bread, crackers, and other starches, and my flare went away, GI tract returned to normal, and the extraintestinal arthritis calmed back down. I blame it on my gluten-free diet that consisted of more fresh fruits/veggies than normal, salads, and a lack of starches. There - should everyone start wolfing down bread because it worked for me and I feel great today when I couldn't get out of bed 3 weeks ago? See how ridiculous that sounds?

This forum has become more bloated than a C&C sufferer's stomach after a bowl of 5-alarm chili.

 

[MissCadenza]

First of all, to say someone's cured is extremely misleading and reckless. Everything we know about C&C says they cannot be cured.. they may go into remission.

Second of all, no we should not all go gluten-free. It's the most ridiculously overhyped cure-all out there right now. There are countless people that live 90 years eating all the bread they can get their hands on. And for C&C sufferers, there are many who eat wheat and other sources of gluten with no ill side effects.

One personal anecdote does not a solution make. Here's my personal anecdote - I actually tried to go gluten-free since this fall, and had an attack in early January. I went back to eating bread, crackers, and other starches, and my flare went away, GI tract returned to normal, and the extraintestinal arthritis calmed back down. I blame it on my gluten-free diet that consisted of more fresh fruits/veggies than normal, salads, and a lack of starches. There - should everyone start wolfing down bread because it worked for me and I feel great today when I couldn't get out of bed 3 weeks ago? See how ridiculous that sounds?

This forum has become more bloated than a C&C sufferer's stomach after a bowl of 5-alarm chili.

You're brilliant, I like you. It is ridiculous when people say 'OH IT WORKED FOR ME YOU MUST TRY IT!!!' I admit I do recommend things to people who say they are in a similar situation for me but if it doesn't work for them, meh, try something else.

Gluten free is totally pointless, unless you've been diagnosed as having a gluten intolerance or actual allergy. It's been a bandwagon diet for forever and I've heard so many people say to me 'YOU MUST GO GLUTEN FREEEEE' and my reaction has been 'oh so you're a medical expert now, are you?'

Gluten foods make up the majority of my diet. White bread, white pasta, rice, oats (in small doses), you name it, I eat it. I need the carbs to run - processed carbs keep me going. Slow release carbs clog me up (hello bowel obstruction). Gluten free anything a) tastes like tissue paper and b) doesn't keep me going. I'm hungry again five minutes later and feeling slightly cheated. Give me proper pizza or don't give me any at all.

I'd say just do what works for you and STOP googling 'remedies' for what ails you online. If we believed everything we read about every symptom we had we'd all be dead right now according to Google. And anyone who claims to have had a 'miracle cure' is probably a liar, deluded or a charlatan trying to con people who are desperate.

I'm now going to go eat some chilli because I am one of the lucky few who can stomach it. No beans, though, just meat and spice

 

[PatrickL]

Ha! Not sure "brilliant" is the right word. I think I'd go with "realist who can recognize BS when he reads it".

 

[7vNH]

Thanks PatrickL for reminding us that "n=1" experiences must certainly taken as they are...one person's experience. The study referenced in OP (which references the large, albeit old, study that showed very much increased mortality risk of UC/CD patients if they had celiac), plus the newer knowledge that gluten sensitivity often is present without upper GI damage, caused me to wonder if that same mortality risk would be present in the gluten sensitive non-celiac patients.

I agree that "cure" is a word that has various meanings, and is a touchy subject here. But it wasn't my choice of words; it was the book author's. Also, the italics were his.

I also agree that "gluten-free" is certainly over-hyped...no argument there. And SO much of the gluten-free foods available are complete junk, with a list of ingredients longer than my arm. Another point about the hype...I don't think that going "partially gluten free" is logical at all. You go completely gluten free or don't bother. A lot of the hype is about marketing companies putting "gluten free" on the label and getting someone who's not completely committed to pick it up in favor of some (equivalently bad for you) packaged product.

Your n=1, with the distubance likely from too many fresh veggies, I understand that too. Raw broccoli is my enemy.

Sorry if you think this thread is bloating the forum, or is BS. My thinking has been influenced by reading some of the well-designed studies mentioned in some popular books (like the study in the OP). I also read a few pubs from the mainstream press (ie the ones that still are hanging on to the USDA guideline from 50 years ago and today) and sometimes see a stark contrast. The companies of the center of the grocery store are fighting tooth and claw, using every tactic imaginable, including buzz marketing, to keep their market share.

Please let me appologize for the wording of this thread's subject (the "headline"). I'll admit it's a bit over the top! (BS?) Going gluten free is a dumb idea for those that have already tried it (in a complete way and for long enough) to re-consider it. Of course I didn't mean to imply that, but the headline suggests that.

Thanks, MissCadenza, for reminding us that only individuals proven sensitive to gluten should consider this alteration in their diet. Again, the headline for the thread was (see above). One caveat, though, is that there seems to be general agreement in the scientific press that the simplest (cheapest) gluten sensitivity test that has been done routinely in the past was not testing enough variations of wheat protiens, and so missed some gluten sentitive people. This is proven by the sensitivity and specificity of that older test, which, when compared to the gold standard of sampling the villi, shows that it misses quite a large percentage of gluten sensitive individuals. If I had an incomplete test (testing only for a single antibody), and I hadn't already tried going gluten free, I'd say get a comprehensive test or try going completely gluten free for three months. This would be especially true if you had DQ2 or DQ8 genetic markers.

And I certainly agree 100% that googling remedies is the wrong approach! I hope nothing I said here indicated that it was. Since all of human knowledge is on the interenet (so to speak), the legit and non-legit items are all in the results. The problem is that the charlatons use SEO to make sure you see the snake oil they're trying to sell. You need to be careful to read the actual papers published, both of the result you want to believe as well as the counter indicating study that you don't want to believe. Then, the really hard part, is to understand why they don't agree. The problem I have with our system is that, many times, monied interests pay for studies, and there's no study designed to counter it. So studies funded by food companies can be biased toward, shall we say, maximizing profits. And to make it worse, the popular press will sometimes report the headline hyped by the manufacturer rather than the real take-away from the study. But, alas, I realize I'm on a rant.

We share one thing, MissCadenza, we can both tolerate chili! My wife has been making this "white chili" lately. Tastes like "regualar" red chili, but is made with fresh green chili's. Not that we don't both like regular chili, but this has been a go-to lately. Yum!

 

[PatrickL]

7vNH.. unfortunately, yes, when someone uses the word "cured" in relation to a diet and Crohn's/Colitis, there's no other term that more succinctly encapsulates what is being said than "BS". And whether it was from the quote or not, it's on you to recognize something's not right when an author is talking about "curing" their colitis.

The gluten-free angle is something that is worth exploring for everyone, as wheat and other sources of gluten have shown to bring about an inflammatory response. On a case by case basis I would certainly expect some people to find relief with it. Just like some will find relief from eating a loaf of bread every day.

We have years of medical research indicating diet is not likely to correspond to incidence of C/C, or to have an effect on sufferers. But in the day of instant (bad) information, we have unqualified people with a website purporting to know for sure that our diets are killing us and we must try GF, Paleo, Hollywood, "Diet du Jour", and it will cure all of our woes. And that's.. you guessed it.. BS.

My advice - just don't be so reckless.

 

[7vNH]

I also would advise against recklessness. That's why I use the term "n=1" a lot, when referring to one person's experience. I expect the reader to take that into consideration. We even have an "n=3" with chili tolerance on this thread, which is meaningless, statistically. Maybe I give readers too much credit for knowing that one person's experience does not make it actionable. Of course, when people are desparate, and the risks and costs are low (like choosing not to eat wheat products), maybe air-tight proof would be nice, but not essential for action.

I hope nothing in this thread I've written encouraged anyone to trust a web site that was pitching some "known fact" (and product to go along with it) that was not substantiated by a well-designed study. And like I said before, even if there is a supporting study, the work is not over; any confounding studies need to be examined and the whole picture needs to be interpreted, including who paid for the studies and what they had to gain. This should probably be done by someone that makes it his or her business to know everything about it (like a good GI doctor). Too bad I probably know more about the clinical trials for digestive diseases than many GI doctors who, frankly, would simply like to continue doing colonoscopies so they can put their kids through college, lol!

 

[valleysangel92]

As someone who was completely gluten free (as a diagnosed coeliac) before my crohns symptoms ever appeared I don't think that this is the answer for many.. While going gluten free has helped some people's symptoms, it is rare for it to completely remove the symptoms and unless it was coeliac all along it won't repair the damage.

In fact, my doctors have voiced the opinion that the drastic change to my diet may of been the 'stress ' that triggered my crohns.

Gluten intolerance is one thing, but the gluten free diet is not something that should be undertaken without medical supervision. Most gluten free foods have added glucose and cutting such a lot out of the diet can result in a range of nutrient deficiencies. So, while it may be worth a try, it isn't necessarily something that everyone should be trying.

And as for the doctors wanting the keep doing tests etc to make money, I live in the UK. The nhs is crippled with financial pressure, tests are not done unless necessary and they certainly wouldn't keep prescribing £1000s of medications if a diet was the answer.

 

[CDJ]

PatrickL I whole heartily agree with you. If diet was the cure for crohns or colitis, then doctors would be using that instead of medication. I do get fed up with hearing that going gluten free is the answer [ it's my son who has crohns, not me ]. I wish it were that easy. For me to think that my son has to be on medication for life is really hard, if diet could cure him, then that is what I would try.

Yes, diet can help, but only to find the trigger foods that can make things worse. I do think that people forget that crohns/colitis can go into remission for long periods sometimes, but this doesn't mean it has gone away. So just because you change your diet and you feel that your IBD is now better, it usually means that it has gone into remission, but at some point will flare up again.

Like valleysangel92 we live in the UK, so don't pay for healthcare, so it is of no interest for doctors here to push for tests etc. The NHS here, as has been said, is under huge financial pressure, and they certainly wouldn't push for these tests unless they were absolutely sure that they were needed.

 

[PatrickL]

I saw a commercial last night that practically made me gag. It was for some cereal, and the mom in the commercial says something to the effect of "it has everything in it that's important to our family, like [blah blah blah], and it's gluten-free."

Really? Such garbage marketing in the US feeding on people's inability to think for themselves. I really do believe we are a nation of idiots. If it's the same for you across the pond, then we might just be a world of new-age crap-information sucking idiots. Gluten-free is now important to you and your family? Why? Again.. WHY??? Because you hear it's the latest cure-all fad?

Sorry to digress, it's just so aggravating. Being GF isn't going to cure anything if anything it's going to lead to a ten-fold increase in Type II diabetes because of the fat and sugars added to "GF" foods to keep them "GF". Seriously, you wanna be GF? Eat rice, potatoes, corn, fruits and veggies. GF isn't some revelation. It's just that this is America and no one can shop and figure things out for themselves anymore so they need a sticker on the box that tells their low-IQ brain that something's GF. GF=Healthy right? No you dolt - you think Betty Crocker double-fudge ultra-chocolate caramel artery-clogging brownies are good for you because the box says GF? Really?

Unbelievable. Rant over.

 

[my little penguin]

I think anything that's "different " must be healthy in most people's eyes

Fwiw gluten free , egg free milk etc none of it helped DS at all
He has lots of allergies so theory was food could have irritated things -nope

My funny on special foods
DS had a tree nut allergy as a preschooler
So we ordered his chocolate from a nutfree facility
Because it was "special" chocolate the preschool teacher thought it must be healthier.
-nope same sugar butter and cocoa as everyone else just no nuts

 

[MissCadenza]

Betty Crocker double-fudge ultra-chocolate caramel artery-clogging brownies are good for you.

This is the most important part of this post, everyone. Ignore anything else around it :shifty:

:rof:

 

[7vNH]

valleysangel92, thanks for sharing your experience. As I had mentioned earlier in the thread, the poor wording of the thread's subject line doesn't help to foster a reasonable discussion of non-celiac gluten senstivity (NCGS). In your situation, where going gluten free didn't help, or might have hurt, I obviously wouldn't say to try it again. The "We All" of the thread subject should have said "all of us that haven't tried it before and don't know if we are NCGS"). I don't think a doctor is required to go gluten free "the right way", which is not to backfill your missing wheat with other refined foods. Backfill with whole foods and you'll get MUCH better nutrition than wheat. Wheat is "enriched" with vitamins and stuff because after they get done processing it, there's not much nutrition left, so I don't buy that there's nutrients there that can't be had in whole foods.

CDJ, thanks for your contribution on the subject. I went back to see if I said that "diet was the cure for crohns or colitis", or "gluten free is the answer" but didn't find anything like that. I did quote something from a book where one person who had not been gluten free in the past was "cured" of UC by going gluten free. I would not have used the word "cured", but I was quoting.

In the original post, I tried to use newer information (that gluten sensitivity has been underdiagnosed in the past) along with a study (that showed higher mortality in celiac patients with UC/CD). The reasoning went like this: If people with both UC/CD had increased mortality in the (old) study, then what about the people who tested negative back then, but if tested with a modern test, would test positive (NCGS). How would they fare? It was a question for thought.

With respect to the one-liner "...GI doctors who, frankly, would simply like to continue doing colonoscopies so they can put their kids through college, lol! " it did include the "lol!" UK budget pressures? I know nothing about those. Here, we have "standard of care" rules that say if "this diagnosis" then "that test at this interval". So here, depending on your diagnosis, you're supposed to get a colonoscopy every X years.

We are all on the same page with respect to the over-selling GF by the marking people of the large companies that peddle their billion and one ways to repackage refined foods.

my little penguin, thanks for sharing your penguin's experience with trying gluten free. Sorry that GF, and other diet "solutions", didn't work. We all know if it was as easy as diet, this forum wouldn't exist, and we'd all be healthy.

Like I said, my original thought for the thread was to explore NCGS by using the relatively new sensitivity testing. Would it be worth it to get a sensitive test? Probably not if a past GF experience produced no results. But what about people who have not done the GF experiment? If you test negative, no need to bother. If you test postive, but do not have any celiac issues (NCGS), that is the interesting question that I was trying to explore. Not saying you then MUST go GF. Just asking for why someone with bowel issues would or would not want to try GF, given new information about their sensitivity.

 

[valleysangel92]

I have to be gluten free. I have coeliac disease. My body WILL attack itself if I eat gluten. I was diagnosed when I was 14. If I wasn't gluten free then I'd be even more sick than I am..

My point was that a situation like mine shows that being gluten free will not necessarily stop or slow the progression of crohns. And while you can be gluten free without medical help it isn't actually that good an idea. I live like that 100% of the time and need regular check ups to make sure I'm not developing blood sugar issues due to the high sugar that's in a lot of gluten free foods (sadly that includes goods that are naturally gluten free in a lot of cases). So I would always advise seeking advice from a doctor or nutritionist to make sure you are getting the best from what your eating. Plus it always helps to have them know what your doing so they can watch out for changes in your condition. Also some medications contain gluten so if you're serious about being properly gluten free then you really do have to let them know.

 

[7vNH]

I will certainly defer to you, vallysangel92, for your advice on getting help and getting monitored for a drastic dietary change like completely removing gluten, especially when there are other underlying disease processes and medication situations that could be upset by the change.

For me, my diet has included very few refined foods for about 14 years. Except beer. But pretty much no bread, no pasta, no cakes/cookies/sweets (except dark chocolate occasionally). I tried to limit processed foods, but of course I got various sugars and added thickeners and starches. So for me, the change to remove gluten would be much more similar to my old diet than someone who currently gets a lot of their sustenance from bread, pasta, etc, which I simply have generally avoided for all these years.