Wheat Allergy Versus Celiac?

[Karen D.]

Hi All - I'm new to this board and celiac disease, so bear with me as I learn the ropes. I have a 4 yr old daughter who has chronic hives and chronic nasal congestion. ped. allergist/immunologist I now take her to did some RAST tests, looking for possible triggers for the hives she has. Two RASTs came back positive - showing mild "allergies" to wheat and peanuts. She showed some minor signs of celiac - occasional diarrhea after eating a wheat heavy meal, such as spaghetti, but otherwise no classic signs like growth problems, or chronic GI problems. BTW, I have an Aunt with celiac disease...

In response I tried to casually just remove obvious wheat products (breads, crackers, cookies, cerieals) - this had no effect on the hives. So then I went all out and put her on a strict wheat-free/gluten free diet - and the hives are dramatically reduced (though not totally eliminated). Not to mention improvemnets in her behavior!

I'd like to know the opinion of other parents here - should I go all out and have her tested for celiac?? Her doctor isn't pressing the issue - he seems satisfied that the hives are under control. However of course I worry - especially when I make those exceptions to the diet - but there's a big difference between the only consequence being an itchy hive, versus damage to the intestine! And also, when she is grown, she will have to be informed... But then what about our health insurance coverage - might we lose it if she is diangsed?? (We are both self-employed and purchase our own insurance)

Any thoguhts are most welcome!

Karen

[CarlaB]

I believe hives are a sign of an allergy ... I've never heard of them being a celiac symptom. If you just removed the obvious wheat products, maybe it wasn't enough since wheat is hidden in so many other products.

If you have a family history of celiac, you may want her tested for that reason, though.

I got tested by Enterolab and am having my kids tested through them too. It's not widely accepted (yet, I think they will be someday), so it shouldn't affect insurance. Of course, you can only see a gluten sensitivity, malabsorption, and an autoimmune response from them. You cannot get a celiac diagnosis because they don't do a biopsy of the intestine, but I think it's safe to say someone having an autoimmune response should never eat gluten, while someone without that response may be able to cheat ... like you say hives or other discomfort isn't the same as bodily damage.

[Ursa Major]

Actually, celiac disease can cause hives, it's one of the lesser known and more rare symptoms. It is definitely one of my symptoms when glutened. Also, improvement in behaviour when gluten-free is typical as well for celiac disease, especially in children.

Not all people have obvious GI symptoms. While hives, occasional diarrhea and behaviour problems may be the only outward signs, there could still be extensive intestinal damage. Some people who's only obvious symptom was anemia showed completely flat villi when biopsied!

So, I think testing her is definitely a good idea. But if you don't want to do that, just give the gluten free diet a good try (at least a month) to see what difference it makes.

[CarlaB]

Well, Ursula, I guess ya' learn something new every day!

Raw honey makes me break out in hives, I always found humor in that ... honey ... hives ...

[Ursa Major]

Raw honey makes me break out in hives, I always found humor in that ... honey ... hives ...

Yep, made me laugh for sure!

[wonkabar]

Not to mention improvemnets in her behavior!

Karen

Karen- My just 3 year old son's behavior is absolutely, positively AWFUL when he ingests gluten. (I, of course, mean that in the most loving way as only a mother could! ) But seriously, Zachary's behavior changed, as well as many of the other symptoms, within a couple of days of removing gluten from his diet. My husband and I were just talking about this a little while ago. The transformation in his behavior is unbelievable!

Celiac Disease and a wheat allergy are two very different things. Celiac Disease is an auto-immune response. If you're going to consider doing bloodwork and/or a biopsy, your daughter is going to have to be back on a regular diet for quite some time prior to these tests. From everything I've read independently and learned from this forum, it's clearly suggested that testing kids under the age of 5 is often inaccurate. My son has a wild reaction to gluten both behaviorally and from a GI standpoint, however his labs came back negative. We were not willing to pursue a biopsy because he's only 3 AND we saw such amazing dieatary results. Making the decision to pursue testing or following a strict gluten free diet is a very personal choice. We're not willing to put our son back on gluten for any further testing at this time. He's far too young to explain this to and also doesn't have the language at 3 years old to articulate exactly what's happening to him when he's had gluten. We don't think it's fair to do that to him now.. or if ever. Considering you've already started a gluten-free diet, you may want to keep your daughter on a strict gluten-free diet for awhile and monitor her behavior and other related symptoms. Just make sure you're removing all gluten from her diet; it's hidden in many things--not just foods. This includes shampoo, soap, detergent, play-doh, etc.

As far as your doctor not really "pressing the issue" goes-- I wouldn't hold my breath waiting for him to press the issue especially if there's been no failure to thrive. You'll be the one pressing the issue if you want to persue testing! My son has had many classic symptoms of Celiac Disease since he was about 18 months old. However, due to the fact that he's always been a big boy the ped GI told me that he was "just fine" and that the changes in behavior were "purely coincidental" when gluten was removed from his diet. This is the general scenario for many parents on this forum. I hope this helped!

--Kristy

[shai76]

I am allergic to wheat and oats, and I also have the celiac antibodies. Perhaps she has both, especially if the aunt is blood related. My son (2) get hives. I think he takes after me with the food allergies, and possibly the celiac disease. I put him on zyrtec and that helped the hives tremendously, but he got tired during the day. I hated how it effected his quality of life. I started him on singulair before bed and his environmental allergies and hives haven't retured. I guess it's something you could mention to your doctor.