Gluten-free

[Nevadan]

I guess newbies are allowed to ask a few irreverent questions, so here goes. My question is "What is the downside of switching abruptly to a gluten-free diet?" In my experience most behaviorial decisions require trade-offs, so I wonder if there aren't some here (never mind the inconvenience factor, etc). I can't help being a bit suspicious when all I read is positive effects.

As a newcomer to this board, some of my observations are:

1. Many posters report feeling better immediately after going gluten-free (me included).

2. Some posters report improvement, but mention having stronger negative reactions to eating gluten after having been gluten-free for a period.

3. Many report having/progressing to various of celiac's "associated diseases" after going gluten-free.

Kind of makes me wonder if the shock to the body of being gluten-free usually after many years of gluten eating might not trigger some of these not so good reactions and results? Does anyone know of any studies that have been done regarding this?

I realize that the people who post here are not a random sample; most have a problem or they wouldn't be here, so that obviously skews the postings.

I have been tested by Entrolab to be "gluten sensitive" without the celiac genes, HLA-DQ2 or DQ8. I do have HLA-DQ1. Before testing I self-diagnosed the gluten sensitivity by changing my diet, and I plan to remain gluten-free mostly because my inards feel so much better, and in case, as reported in some early studies I've seen, the "gluten sensivitity" with a gluten diet may lead to some of the "associated diseases" without ever going thru the fullblown celiac disease stage.

Comments?

George

[celiac3270]

Yes--probably the main downside is that without the constant intake of gluten, you become more sensitive and reactive to it than you are when you have that steady stream. I don't know of any studies that have been done regarding an abrupt change, but one thing that might actually be good is that newbies often make a few mistakes in the beginning--and therefore go from full gluten --> low gluten --> gluten-free....not so abrupt.

Umm...about developing associated conditions--celiac left untreated for a long period of time will increase those risks...and they make appear post-diagnosis. I can't imagine why you would develop them due to a diet change if you don't actually have celiac.

[tarnalberry]

Physically, no there aren't really any downsides to just switching to gluten-free, because you're not necessarily making that big of a change. If it means that all of a sudden you're eating more sugar, or causing some other significant change in your diet, that's different, but eliminating four ingredients out of all possible ones isn't that big of a change.

I think the downsides are primarily social/psychological, as it can be a pretty significant change from that perspective and requires a change (even if only in understanding) from many OTHER people.

[dogear]

Well keep in mind that prior to the 1500's, all Native Americans were living on a gluten free diet. Aparently wheat was non existant in Lima, Peru and Quito Ecuador until nearly the 17th century. Many people in the highlands of New Guinea, were gluten-free until the 19th century and many tribal peoples probably still are. I was reading an article on what children eat, and one girl from South Africa said her favorite food was Wheatabix, but she could only have it a couple times a year. Otherwise her family ate corn, beans, vegetables, and meat.

In fact ALL people were gluten-free for most of human history. Not only was there the time before farming, but beans, lentils and some grains like millet were started before wheat. And that's in millenia. In fact, some scientists are now saying that most very ancient varieties of wheat and barley didn't even have gluten in the sense that they have in more recent centuries.

So no. There's no reason anybody-even a vegetarian or vegan-has any particular need to wheat, rye, barely, or oats. Peroid.

And I can't imagine that a gluten-free period could "sensitize" you unless, you already had some level of predisposition or asymptomatic sensitivity, that might have come out or affected your health in time anyway.

[gf4life]

I think that one of the reasons people "suddenly" discover that they have other health issues after they go gluten-free is that the symptoms of their gluten reactions were masking the symptoms of their other health issues. Once you eliminate the gluten and your body is healing, then you start to notice the other health issues. It doesn't mean that going gluten-free caused these other health issues. They could have been there all along and not be noticed until you eliminate the gluten.

Also I think that our bodies like being gluten-free and so once we are healed (for some people) the reaction to a tiny amount of gluten can be worse than their symptoms while they were eating a full gluten diet. But the symptoms should go away once the source of the accidental gluten is identified and eliminated. Does that make sense? I think I am saying it in a confusing way. Here is an example. My daughter used to vomit, suddenly, unexpalinably (at the time). That was her primary symptom (besides being borderline "failure to thrive", and just itty bity tiny as a newborn and toddler). After being gluten-free for a year she now develops DH when she gets a fair amount of gluten. A tiny bit of contamination will cause her to have a stomachache and diarrhea, but anything more will cause the DH to break out. I don't think that going gluten-free caused this, it would have happened eventually anyhow, it was just a matter of time.

God bless,

Mariann

[VydorScope]

Only down side I know of to add that has not been covered is COST. gluten-free diet cost more then non-gluten-free.

[tarnalberry]

But they don't have to - it depends on whether or not you get specialty items - or have other intolerances. For kids, I can imagine that it's much harder as there's more demand for food that's like what their peers are eating. I don't look forward to facing that challenge if it occurs. ;-)

[KaitiUSA]

The main downside is on the social scene for me. It's can be difficult to explain to people who don't get it.

The cost is more expensive for the specialty gluten free items too.

Physically, I don't think there is a downside

[skbird]

I think this is an interesting argument - the sudden quitting and that affecting your health in other ways, but then consider all the people who have been on the show Survivor, for example, and they don't usually get any gluten during their stay there.

In fact, thinking about that show, I always cringe when someone on the show wins a challenge and gets dinner for two or whatever with bread, etc, and alcohol. After several days of not eating right or getting enough water, can you imagine how horrible they must feel the next day? Especially because they usually overdo it? Yuck!

There are certainly other examples, like maybe there are certain prisons where people are in solitary confinement and don't get maybe any gluten (though I guess bread and water is common in those situations) and maybe prisoners of war, etc. It just seems that if the effects of extreme diet change are that harmful in the long run, then we'd know more about that.

I really think what Mariann said is on the target - it's just that when we get past one set of symptoms, we see the others that are left behind. I had an accupunctrist who called it "peeling an onion" - each layer reveals another layer just underneath... Also, I believe we develop a heightened sense for our health after improving some aspects. And that is what helps us to notice the difference.

Stephanie

[celiac3270]

I love Survivor ...my family and I always joke that I could go on that show since all they eat is rice and fish for 40 days...I know, I can't believe that they win a reward and go drink four beers and then compete the next day in a challenge--I would think they'd be drunk from so much after having none of it, sick from drinking so much, and further dehydrated--since alcohol does that to you. I wouldn't want to go on that show, anyway, but it's funny that we kinda could...as long as nobody got something gluteny as a reward and then cooked it in the same pan, lol. CROSS-CONTAMINATION!!!

[skbird]

Yeah, celiac3270, I've made jokes about that, too! Yeah, rice? Sure! Fish? Sounds more and more like my diet every day...

You totally cracked me up!

Stephanie

[ianm]

For me my food bill went way down. I don't eat any processed foods. I only eat whole foods. Because of this I don't need to eat nearly as much as I used to.

[Carriefaith]

wow dogear that was pretty interesting, where did you learn about that ot get that info?

[frenchiemama]

For me the only real downside is that I can't just walk into any restaurant and order whatever I want off the menu. Physically I dont' think there is a downside. The gluten reactions seem more severe, but that may be because we are used to feeling good most of the time whereas before we were feeling pretty cruddy most of the time and being sick from gluten is no longer the normal daily condition.

[frenchiemama]

Also, even if there are some downsides, isn't being constantly sick and most likely dying an early death worse than any possible downsides to the gluten-free diet?

[watkinson]

I think it may look as though poeple come out with more diseases and ailments after being diagnosed with celiacs because they educate themselves and tell thier doctor what they have.

I was always sick as a child, they just figured I was "sensitive". Started having severe back pain in Jr. high, then severe neck pain and daily headaches. Was told to see a chiropractor. Stomache problems started in high school, was told I have a "sensitive" stomach. Rashes and exzema started in late teens, was told by many different dermatologists over the years that I had "sensitive" skin!

Started having severe joint pain, muscle pain and sleeplessness in early 20's, doctors didn't know why, and I was went on my way time and time again. When the somach problems got so severe for over 6 years, and the joint pain was so bad it felt like my bones were broken, and my hands and feet would tingle, and feel numb like they were asleep, doctors checked me for every disease imaginable, but didn't know why

A couple years ago I found out about celiacs, went to my doctor and asked for the test. LOW AND BEHOLD!! Now they knew to look for vitamin deficienties, thyroid problems, fybromyalgia, peripheral neuropothy, ect.

So it's not that I got these ailments AFTER being diagnosed, it's that they were FINALLY properly diagnosed.

The good news......Everything is sooooo much better now that I am gluten-free. In fact some problems are completely gone or have reversed themselves, I am no longer hypothyroid, the peripheral neuropothy is gone. the joint pain is nearly gone. Ect.

For me anyway...there has been NO downside whatsoever, life is finally good!!!!!

Wendy

[frenchiemama]

Wendy, you sound just like me. I was always "delicate" or "sensitive", my skin problems were either because I am a redhead and my skin is "sensitive" or because I had emotional problems. My aches and pains and headaches were from stress. On and on.

Anyway, like I said before, I think the positives of the gluten-free diet so overwhelmingly outweigh possible negatives that the negatives aren't even worth considering. Going gluten-free was not a choice for me at all, it was the only thing to do.

[mle-ii]

Actually 1 downside might be that if you cut out gluten you might also end up cutting out the vitamins that are added (fortified) to most breads and wheat products. So you need to make sure that you still get plent of those vitamins in your regular diet.

This goes the same for dairy and some other products that are fortified for one reason or another.

Another downside might be lack of fiber if you don't eat a lot of veggies/fruits already.

But the other major downsides for me are the social/resturant issues of having to make sure no gluten gets in.

[tarnalberry]

Actually 1 downside might be that if you cut out gluten you might also end up cutting out the vitamins that are added (fortified) to most breads and wheat products.  So you need to make sure that you still get plent of those vitamins in your regular diet.

Quite right, I forgot about that. There are studies that have shown that folks who follow a gluten-free diet by replacing wheat-filled items with their counterpart gluten-free items may have lower folate levels, because gluten-free breads and pastas are not fortified with folic acid. Just another argument for a well rounded diet! ;-)

[Nevadan]

Thanks to all for the good discussion. I am enjoying it and hope others are too. Where else can you have such a discussion with such an experienced group. I thought the point about vitamins and fiber very worthy of some extra attention. I agree about just feeling better being a major positive.

George

[skbird]

Wendy and Frenchiemama sound just like me, too. It's funny how you forget about how bad it was "back then" before going gluten-free. I mean not completely, but just some of the details. Esp. the "you're so sensitive" part. I get that ALL the FREAKIN' time... even now! Before it explained all these reactions, now it supposedly explains why I'm sensitive to gluten in the first place! It's the biggest catch-all, ever.

I guess I could take it as a compliment but I get tired of hearing how sensitive I am, how fair my skin, my red-blond hair... yeah, it's a real party being so "sensitive!"

Stephanie

[frenchiemama]

Yeah, what is up with that redhead = delicate thing that everyone always tosses at me? Seriously, are we just considered generally deficient in some way? I've even had doctors blame stuff on my being "a sensitive redhead", that's what everyone kept saying about my DH "sensitive redhead". Well my mom, her 4 siblings and my 2 siblings are all redheads, as well as my husband's grandmother, aunt, mother, brother and 2 cousins. And NONE of them have skin problems like I have or are what I would consider "delicate" in any way. And the only evidence that I have ever heard to support any of this is that redheads tend to have a lower pain threshold and usually require up to 35% more anesthetic than others.

Anyway, about the vitamin/fiber shortage. That is true, but I guess it seems so easily dealt with through proper diet and supplements that I don't really see it as a problem.

[tarnalberry]

I thought the point about vitamins and fiber very worthy of some extra attention. 

If you choose gluten-free replacements wisely, there shouldn't be a problem with fiber. (Many of the alternatives to wheat have *more* fiber.) But again, it's all about food choices.

[mle-ii]

If you choose gluten-free replacements wisely, there shouldn't be a problem with fiber.  (Many of the alternatives to wheat have *more* fiber.)  But again, it's all about food choices.

I agree, in fact since I've cut out wheat/gluten and have been watching what I eat I've found I eat more fiber and get more nutrients from my food. I've found fitday to be one of the biggest helps.

Here are a few other sites I found helpful:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

HTH

Mike