[tboroson]

I know the official celiac line is "Spelt = wheat". But, there is such a body of anecdote attesting to people tolerating spelt, as well as barley and rye. Celiac.com stands behind that party line, but all their evidence is weak. With regard to spelt, it's based on the fact that the gluten protein is 98.5% similar to gliadin in wheat. That's a fairly logical leap... but there've been no in vitro studies to prove it.

For years, oats were thought to cause a reaction in celiacs also. The gluten in oats, avenin, did indeed cause a reaction in a petri dish. In more recent years, though, it's been found that avenin does not cause a reaction in most celiacs. It's thought that this is because avenin is more completely broken down in the stomach before the proteins reach the small intestine. Here's the kicker, though. While they don't seem to cause a reaction in most celiacs, they do cause a reaction in some. So, it would seem that some celiacs are more sensitive than others.

Another factor I'm considering is that there is a lot of anecdotal reports of people who react to the gluten in every grain, including corn, rice and millet. Despite the fact that the official celiac party line is that those grains are totally safe, some people find they have a very clear reaction to them.

So, I'm comfortable in believing that while the average celiac is in fact sensitive to the "normal" set of grains (wheat, rye, barley, plus their close relatives), some are far more sensitive. Why, then, is it difficult to believe that some celiacs might be less sensitive? That their bodies might not react to barley, rye or spelt at all? Hordein (the gluten in barley) and secalin (rye) are not gliadin. It's obvious that some people respond to gliadin and hordein and secalin. But, why can't someone respond *only* to gliadin?

Since a few people react to all glutens, and a bunch react to the usual suspects plus avenin, and a whole lot react just to the usual ones, is it that much of a stretch to believe that some might react only to gliadin? And, is the 98.5% similarity between wheat gliadin and spelt gliadin really enough to call them functionally identical?

I'm also contemplating the range of symptoms that people who are sensitive to gluten suffer. While the typical gut issues of celiac disease are very common, many people (myself included) never seem to suffer those symptoms. That wide range also seems to indicate that this issue is not as cut and dried as the official party line would lead us to believe.

It seems to me that the celiac/gluten sensitive community being not well served by oversimplifying this issue. By saying that "all celiacs adhere to this set of boundaries" and ignoring the possibility of variation, those who are more sensitive are being underserved and physically damaged; those who are less sensitive are unneccisarily restricting themselves. Given the emotional and psychological difficulty of such restrictions, loosening them where appropriate would be a great boon to them.

 

[flitters]

I'm just going to give a general response, since I don't have a whole lot of experience on the matter.

Also, I'm speaking from the point of view that my ds is gluten intolerant. I do not think he has Celiac's. He is on a GF diet for that reason, but I think his sensitivity is less than most people with true Celiacs...

I very much agree about the problems with one-size-fits all diets. Still, they are easier to prescribe than something more custom, especially if it really sucks to try something new and find that it is not tolerated. (For instance, I've never tried several kinds of nuts because for me it's not worth the discomfort if I respond to them as I do to others...)

For my son, we started by eliminating wheat. Chronic cough went away. Painful gas went away. (He never had rashes or swelling or scary stools). After a couple months, I noticed he would still cough at times, or have painful gas, and I started reading more. At that point, we eliminated barley (he was still getting quite a bit of barley) and all other glutens from the normal list. He has been completely symptom free and healthy and has even tolerated the accidental small ingestion of wheat a couple times much better than when his immune system was constantly being bombarded with glutens. He has never had a problem with oatmeal.

I have no plan to try to reintroduce glutens ANY time soon. When he is older, I'm sure we'll have more instances of accidental ingestions, and if he tolerates them well we will slowly (REALLY SLOWLY) start offering / testing with foods containing gluten. My plan then is to start with things like spelt and other grains that contain less offensive forms of gluten and see how things go. Then move to barley. Then to wheat.

So yes, I guess I do think there are different levels of gluten intolerance, but I don't know if that is the case for people with full blown Celiacs.

I'm not sure if you were asking a question, but surely I haven't answered it!

 

[tboroson]

I wasn't so much as asking a question, as throwing out a few thoughts for others to ponder and expand upon - which is exactly what you did

I know it's been easier to limit my daughter's diet than my own, since a) I'm in control of her diet, and b) she doesn't have the same deeply rooted social connections to food, being only two years old. But, some day she will - someday she'll notice that everyone else is eating a different birthday cake than her, or be upset that her sister gets her ice cream on a cone and she doesn't. So, it'll become an issue then.

 

[Pauli]

Ummm, I dunno. But here's a weird thing. When I tell people that my dd is allergic to wheat and rice a fair number say "Oh that's celiac disease and you shouldn't give her rye or oats either." I get tired of explaining that a wheat allergy is NOT celiac disease, so now I just say "Oh really?"
Our allergist said she shouldn't have spelt though since it was so closely related to wheat. Even if she tolerates it, the allergist thinks that in the interest of outgrowing the allergy it would be best to avoid spelt. If she doesn't outgrow the allergy she said we could try spelt and if she doesnt' react it would probably be ok to have it occasionally.

I'm wondering, how does quinoa fit in with the "celiac" grains? I never hear it mentioned.

 

[tboroson]

Quinoa is taxonomically very distant from the glutinous grains. It is generally very well tolerated by celiacs. (But for those few anecdotal examples of people who don't tolerate any grain at all.)

 

[wendy1221]

The thing is, there are several different species of wheat. If you are going to say spelt isn't wheat, then where do you draw the line? Is durum wheat, or is common wheat wheat? B/c if you say spelt isn't wheat, b/c it's a different species and isn't 100% the same as the other wheat/s, then either durum or common wheat has to go, too, by that definition. Kamut is another species of wheat.

Quinoa isn't remotely related to wheat, barley, rye, etc.

http://en.wikipedia.org/wiki/Wheat
http://www.hort.purdue.edu/newcrop/n...m_spp_nex.html
http://www.foodallergy.org/allergens/wheat.html
http://www.csaceliacs.org/documents/Spelt12006.pdf

 

[tayndrewsmama]

: This whole thing is driving me nuts lately. The kids and myself have all been tested for celiac and were negative, but it's blatenly obvious that there is major reactions in all of us when consuming wheat products. To make matters worse, dd is starting up with chronic hives again and I don't know if we can handle another six month stretch of such miserable unknown. The docs won't do allergy testing, they say she's too young (5 in Oct). This probably doesn't even belong in this thread though. I am just clueless where to turn anymore and just want to cry.

 

[Pauli]

Quote:

Originally Posted by tayndrewsmama : This whole thing is driving me nuts lately. The kids and myself have all been tested for celiac and were negative, but it's blatenly obvious that there is major reactions in all of us when consuming wheat products. To make matters worse, dd is starting up with chronic hives again and I don't know if we can handle another six month stretch of such miserable unknown. The docs won't do allergy testing, they say she's too young (5 in Oct). This probably doesn't even belong in this thread though. I am just clueless where to turn anymore and just want to cry.

What kind of doctor have you gone to? I would strongly recommend a pediatric allergist if you suspect a wheat allergy. Wheat allergies are very common and your dd is NOT too young to be tested. My dd was tested at nine months. She has both blood and skin tests with accurate results.
Hives are an allergic reaction. Do you think she is allergic to something in the environment. You said six months....is always the same six months? Do you suspect pollen or mold or anything like that? Has anything else changed, like in your diet? Sometimes people are allergic to a food that has a season and is only around certain times of the year...
If you suspect a food, the obvious course is to eliminate it entirely from her diet and see if that helps.
Good luck, I know how incredibly frustrating it can be. Remember though, YOU are the one in a position to figure it out, not the doctors. If you can narrow it to a reasonable number of things it might be, they can narrow the test....

 

[tayndrewsmama]

We have seen a pediatrition, a homeopath and a naturopath.

Last year it started in the last week of July, this year it started three days ago. Granted, we do have 200C Apis and I gave it to her after the second hive appeared, so that had to help majorly, but last year we almost took her to the ER in CT. They were enormous then and all over her body too. I think that there is a certain amount of seasonal allergies involved, but that doesn't really explain why they lasted into February and even some in March.

 

[wenat]

DS1 got his first allergy test when he was 2.5 yo. I'm taking DS2 in for his when he turns 1 -- that's the earliest his doctor will refer me to a pediatric allergist.

So do find a pediatric allergist, because they can do reliable testing on 5yo's.

(I've been told that allergy tests aren't reliable until the kid is at least 2-3 years old, but I'm taking DS2 in anyways because I suspect a dairy and egg allergy, just like his brother has -- he's subtly reacting through breastmilk. And I want to know if there's anything else that I haven't yet figured out.)

 

[tayndrewsmama]

Hmmm, I think I will start looking into that then. I am sure they must have a few at Children's Hospital in Milwaukee.

 

[wendy1221]

My ds3 is the exact same age as wenat's ds2 (born same day.) We had him SPT'd when he was 6 months old. The allergist told me to bring him in when he was 6 mos when we took our 2 year old in for testing. Ds2, the 2yo, had no symptoms of allergy, but b/c of family history (both sides), I wanted him tested. (He tested neg to the top 8 foods, but allergist wants to see him when he's 4 for more testing b/c he has allergy shiners. Probably mild environmental allergies.)

Our ped didn't want to send him, but since the allergist wrote a note saying that both he and I wanted to test him, he gave us the referral. Ds3 tested very positive to eggs, positive to wheat, negative to fish, and he had tiny bumps for the remainder of the top 8, which the allergist said he would normally call neg, but since ds was so young, and the fish had NO bump, he told the ped that they MAY be positive and that as I'd seen definite reactions to soy and peanuts, we should treat him as allergic to shellfish, peanuts, nuts, and soy.

 

[onlyboys]

I am certain that there is a celiac continuum--some celiacs are more sensitive than others. I believe that. It's very frustrating to me, as a mother of a celiac child, to not know exactly what will make him react and what won't. Maltodextrin is bad, unless it's good; same with modified food starch, oats and spelt.

:

But what it comes down to for us is that Asher's life is so miserable when he gets even the slightest bit of gluten--cross contamination is usually the way this happens--so if there's a chance, then we avoid it.

 

[tboroson]

I was just thinking about this some more, and realized I hadn't really fleshed out one of my ideas about spelt (and barley, etc.)

Going back to oats, it was found that oats caused a reaction in a petri dish; that's why they were verboten for so many years. It was more recent studies in vitro that found that for most (but not all!) celiacs, they don't cause a reaction. Why would they stimulate an immune response in a petri dish but not in vitro? It's thought that it's because the stomach is able to adequately digest the protein, breaking it down into peptide fragments smaller than those neccisary to trigger the receptors in the small intestine. Apparantly some people's stomachs aren't able to do this, thus the percentage of celiacs in the study who still reacted.

Next, I read Enzymes for Digestive Health and Nutritional Wealth. The author had incredible results with enzyme therapy for her autistic sons - and for her own migraines and sensory integrative issues. She talked about using enzymes to help break down proteins and carbohydrates before they leave the stomach. I wonder, is the issue of celiac exacerbated by our current state of ill health in first world countries, such that more of us are failing to digest these proteins as well as our ancestors did? There's evidence of celiac disease going back milennia, but not at the current rates. So, no doubt the reaction to undigested gluten peptides is inherent and has always been with us; but, has the rate of not digesting them always been this high?

So, the hype about spelt is that it's easier to digest than other varieties of wheat. That is what rings interesting to me. Yes, the protein itself might not be that different than regular wheat protein. But, if the grain as a whole is less difficult to digest, why can't it possibly be true that, as with oats, the peptides that travel from stomach to small intestine are small enough not to cause problems? Same maybe with barley and rye, for some people.

I just can't help, though, observing that my good friend is *extremely* sensitive. She's been gf for a year, and still reacts to the tiniest contamination. OTOH, I've been eating spelt, oats and barley for about three months with zero reaction; but, a few days ago, I indulged in a splash of regular soy sauce with my sushi and instant reaction. In fact, worse reaction than I've ever had before. Since then, I've had spelt sourdough bagels and oatmeal cookies with barley flour, and I've been fine.

 

[tayndrewsmama]

:

It's so much to digest, no pun intended.

 

[JaneS]

More food for your philosophical thoughts, Tara: the idea that it's not just wheat in particular but how it's prepared.

Sourdough Bread Made from Wheat and Nontoxic Flours and Started with Selected Lactobacilli Is Tolerated in Celiac Sprue Patients
http://aem.asm.org/cgi/content/full/70/2/1088

The current issue of Wise Traditions, the newletter of www.westonaprice.org is all about celiac disease and the history of grain hybridization. And with respect to this study I posted, articles in that edition talks about the idea that traditional societies did not prepare bread like we do in modern times: with quick rise yeast. Slower rising with sourdough, or soaking or sprouting grains beforehand, neutralizes enzyme inhibitors which prevent anyone who does not have stellar digestion from digesting whole grains fully. Those practices also neutralize phytic acid, present in all grains, which binds to minerals and prevents us from absorbing them.

I fear more celiac in our society's future with the addition of "heart healthy whole grains" on every brightly colored package of toxic crap in grocery stores. Because high heat processing also adds more to the mix: acrylamides and rancid oils and proteins.

 

[tboroson]

Jane, I saw that link when you posted it elsewhere (in the celiac thread in Traditional Foods? In the sourdough thread? I don't recall...) Anyway, yes, it got me thinking, too. Even before reading that, I was hot in pursuit of sourdough recipes for my spelt

Even if I seem to be ok with spelt convenience products, there's no doubt in my mind that sourdough spelt is even better.

 

[JaneS]

French Meadow makes several kinds of spelt sourdough and a pizza crust version too (never had that one but the cinnamon raisin is yum).

 

[my2girlz]

My ds outgrew his wheat sensitivity, dh and dd2 are still wheat intolerant among other things. They tolerate spelt and oas just fine. DH has brought it in 3x to be tested (applied kinesiology) and was fine. I get tired of dh's family always saying spelt = wheat. We aren't gluten intolerant just wheat intolerant. It's so frustrating!

 

[tayndrewsmama]

Quote:

Originally Posted by my2girlz I get tired of dh's family always saying spelt = wheat.

I have no idea why, but the acupuncturist that I went to and my mom currently does go to, is always telling people that spelt is wheat.