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Is Going Wheat-free Enough?
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2 posts in this topic

Let me start by describing my 5 year old son's "reactions" to wheat ingestion. Within an hour or so his cheeks, chin and ears flush a scarlet red and are hot to the touch. This happens EVERY time he ingests wheat, no matter how tiny the amount. Sometimes he gets a rash on inner thighs, underside of arms, and on abdomen, depending on the amount of wheat he ingests, more than a trace amount of wheat = more chance of a rash. He has been known to get hives, but these are not a consistent reaction symptom. He gets stomach cramps, sometimes so bad he rolls on floor, writhing in pain and crying inconsolably. Before long he gets a couple of bouts of diarrhea. Often out of control hyperactivity accompany all of these things. When he was just over 2 years old, he would "test" potential food before eating it, by cautiously licking it and waiting to see how his tongue felt. These reactions to wheat are more suggestive of an allergy than of celiac. (Do you celiacs agree with this opinion?) Pediatrician ran one single blood test to see if it was celiac. (I am unaware of which test he did. He told me he did the only one covered by our health insurance, as the other one would be expensive and according to him, the one he did came back "negative" for celiac.)

So for the past 3 years we have become better and better at keeping the wheat out of Logan's diet. Now and again a mistake is made and a molecular amount of wheat is ingested, like in trace non-visible amounts, and Logan pays for it with a "reaction."

One of the very few wheat-free mainstream cereals he can eat is regular Rice Krispies, which contain barley malt. Because he is not diagnosed celiac, and his reactions suggest wheat allergy, versus celiac, he eats the barley containing Rice Krispies probably 2 or 3 times a week or more, for breakfast, or for snacks sometime through the day. He has never seemed to have any reaction whatsoever to Rice Krispies and their malt.

For about a month, he has told me EVERY day, several times each day, "I don't feel well.", acted genuinely like he was somewhat under the weather, and eaten less than a bird does. I believe he has lost weight, though I don't own scales to verify that suspicion. We become even more diligent than before, if that is even possible! determined to find out what's making him feel ill.

Thursday, after getting up at 12:35am with him, severe explosive liquid diarrhea, and complaining of cramps, it occurred to me that he might be reacting to milk, as he hasn't ingested ANYTHING that could possibly be contaminated with wheat, and I became lactose intolerant when he was 6 months old, and his older sister has been lactose intolerant, right since I first introduced cow's milk to her.

Friday, I don't let him have ANY milk what so ever, and ask him several times through the day, "How does your tummy feel?" to which he responds, all day, "Fine." Ditto that for Saturday!

I think I may be onto something! Hurray! However, my question is this. Would it be normal for him to become lactose intolerant after being able to drink milk for 4 years ( I nursed him exclusively until almost a year)? I guess I know that answer because I drank milk no problem until I was almost 31 years old!Would the small amounts of barley he consumes here and there, such as in his five year old portions Rice Krispies a couple of times a week, be enough to cause enough damage to the villi to flatten them, enough to cause Lactose Intolerance, IF he DOES have celiac disease? I've read that he'd need to be eating the huge (no joke intended! )amount of a full slice of bread a day for weeks to be "gluten-loaded." I think he'd nearly die from eating all that wheat!, his reactions would be systemic and severe! Could the odd dose of such a small amount of barley cause significant villus atrophy?Remember he has been totally wheat-free, as much as is humanly possible, and NEVER reacts unless to wheat specifically.

This detective work is SOOOOOOO tough, and the stakes seem so high, especially when your child tells you several times a day, I don't feel well, refuses to eat, but also says he's hungry!

If this is lactose intolerance , which I have really no idea whether it is or not at this point, does that point toward celiac for him, even though he's been 99.95% wheat free for the past 3 years? Or is it probably a coincidental lactase deficiency, that developed, unrelated to his wheat problems, like I did? I would be very interested in hearing what you who are experienced with and knowledgeable about celiac think about this situation.

P.S. He never eats anything that contains rye, as it's just not a common ingredient in my opinion. And we had to switch him over to the Mc Cann's Irish Oatmeal about a year ago, when we realized he was reacting to "regular" Quaker Oats, and to the oatmeal content in Granola Bars that listed zero wheat in the ingredients. So you see, even the trace amount of wheat present in "contaminated Canadian oats" is enough to set his system off.

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I agree that what you describe is more typical of an allergy than an intolerance, and your doctor can confirm that by doing an allergy test (different from the celiac test he ran). I would encourage that test too, since what you describe is fairly severe, and if his reactions could turn anaphylactic, you'll need to carry an epi-pen at all times.

If he is indeed celiac, however, even a small amount of barley malt would do damage, and you would want to avoid that as well. On the other hand, you've noticed that he's done better without milk. Now, if you've entirely eliminated dairy and dairy containing products, it'd be hard to say if it's lactose or casein that's the issue, but lactose intolerance is actually not uncommon, more so in some ethnic groups than others. There are a LOT of people who are lactose intolerant who are NOT celiac. The doctor can also test for lactose intolerance, but you can try a test at home to see if having him take lactaid before consuming dairy helps.

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    • Thanks.  This is very helpful.  Our first post diagnosis grocery store trip took several hours, just trying to read labels to make sure everything is safe.   Our son loves bread and this going to be the hardest part. 
    • i would agree with most of your assessment but overall the popular chefs are very aware. Ed Kenny at Town did have  gluten-free options on the menu.  Mavro's will fix something special given advance notice but its expensive.  excellent but very expensive.  Alan Wong is very aware and will have his staff prepare something as well.  We did find many options at both Oahu  whole foods -- mostly  with tofu. the only thing  there is to be aware of cross contamination with things  next to it.  they make a great gluten-free southwestern tofo dish which is great but not if its sitting next to anything with gluten. Its not whole foods but people use the smae  spoons and tongs i found more at   down to earth in peal city than by  University ave  
    • Hi,  I'm in KOna but my kaiser doctor just retired  who was pretty good about it. I dont know of a specialist here  but most of hte kaiser docs wil test you if thats when you need to talk to them about. good luck  
    • Yes.  And wouldn't it have been nice if your doctor had tested you for Celiac disease before you went gluten free? Then you would know if your issues are Celiac or not.  That would help you know how careful you need to be, what other illnesses and problems to look for, whether you might be passing a genetic disease on to your children, if you should look for another cause of your symptoms, etc  
    • I would be very careful in giving this kind of advice, she is in an advanced stage. I was there and one additional symptom that I was getting was a strong urge to commit suicide so eating gluten for three months might not be the way to go for some people. If a gluten free diet stop the problems them gluten is the problem or a least part of it. I eliminated MSG from my diet because I notice that the common denominator for some products that affected my well being was MSG. I eliminated oats because I notice that I would get canker sores every time I ate it. Wheat is what affect my brain the most, irritability gets uncontrollable, my mental capacity greatly diminish, rash in my arms appear, can't sleep,etc. Barley makes my stomach groan, and constipated. Will try testing how Rye affect me some later time. 
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