• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Is Going Wheat-free Enough?
0

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,339
    • Total Posts
      935,556
  • Member Statistics

    • Total Members
      64,996
    • Most Online
      3,093

    Newest Member
    Gfjeschef
    Joined
  • Popular Now

  • Topics

  • Posts

    • Spicely Organics lab certifies all their spices gluten-free. The turmeric and curry powder they have is safe, also Thai Kitchen Curry Paste is certified Gluten free....I like you do not trust the normal curry powders or most blends with it.
    • In 1978 Virginia Slims' magazine advertising spouted "You've Come A Long Way Baby". Well, in 2011 "WE" celiac/DH people can express those same words when talking about how far we have travelled since I was diagnosed as a brittle celiac/DH person 16 years ago. If the people with peanut allergies can become well known, so can celiac people! DID YOU KNOW: That 16 years ago gluten free foods were difficult to find, and upon finding the small frost-bitten white-gummy loaf of bread, which was even more expensive than it is today, one had to scrape it off the roof of your mouth with your tongue and chew! View the full article
    • I would be willing to bet that nothing changed in that product except the label.  A bunch of companies seemed to have decided that they need to put "May contains allergens " on the everything to be safe.  But I wouldn't buy it any longer.    
    • If you want testing for celiac you will have to go back on gluten for 2 to 3 months for the blood test. There is a chance that your biopsy will be positive but if not then a challenge is in order. It would be a good idea to have your son tested also to keep him safe in school etc. He would need to do a challenge also if his ped agrees to test. It sounds like the wooden items your father made have great sentimental value. Perhaps you could clean them very well and then give them a sanding. That might make them safe for use.  
    • I've assumed for the last 8 years that I have gluten intolerance, or NCGS as I see it's now called. I thought that I had testing done (blood tests) that indicated I did not have celiac disease, and proceeded to follow a gluten free diet, most of the time. I've had gluten different times for different reasons, mostly because I started thinking "This can't be true. I should be able to eat my delicious home made bread!" and I suffered the consequences. Mostly pain in my neck and upper back, burning between the shoulder blades, also bloating and cravings for sugar and junk food. Each time, it took longer to recover from having gluten in my diet. The last time was over the holiday season last Christmas. Now I'm having pretty persistent symptoms, with the addition of occasional severe epigastric pain. So, off to the doctor I went to get this severe pain checked out. I found myself having an EGD a few days later, and when I woke up from my propofol induced stupor, there was the nice gastroenterologist telling me that he'd done biopsies to check for h. pylori AND CELIAC. I was floored. He didn't know I'd been gluten free. He did find mild gastritis and reflux, and no sign of hiatal hernia, which is what I really thought I had. I've looked through all my test results from the last 10 years, and can find nothing about testing for gliadin antibodies, or any of the tests mentioned here for gluten issues. I did have allergy testing done that was negative for wheat but I know that's not the same thing. I'm assuming that my biopsy will be normal, but that would be meaningless because I've been mostly gluten-free. The only times I've had gluten since January is maybe five times when I've had a couple of croutons on my salad at Olive Garden, or had an egg roll or wonton soup. If it's positive, then I know I've not been as vigilant about eliminating gluten as I should be, and I will have to stop using my wooden spoons (that my Daddy made) and my wood cutting boards (that my Daddy made) and throw away my favorite plastic spatula. My wooden cooking things were in use long ago, when I was still cooking wheat pasta, etc. So I know they are contaminated. My husband is telling me that there can't be enough gluten in those utensils to make a difference, but I've always worried about it a little bit. My Daddy can't make me any more things to replace the ones I have... I think right now that maybe the best thing for me would be to actually have a formal diagnosis, because that would make it easier for me to stick to the gluten free business. Right now it's too easy to let it slide, and to let people convince me that it's OK "just this one time". But - I'm wondering if there are any drawbacks that I am not aware of, and if anyone here knows please tell me what they are! If the biopsy is negative, then is there another test that can be done to make sure I really don't have celiac? I really need to be sure because I have two children. One of them has anti thyroid antibodies (I have Hashimoto's thyroiditis) and that son also has alopecia areata and psoriasis. He is gluten free along with me.  
  • Upcoming Events