new to gluten free living

[washingtonmom]

Hi all
I do not believe I am celiac, but I do have some sort of wheat allergy. About 4 months ago I put myself on an antiinflammatory diet to try and help my asthma (no grains, no sugars, etc) I didn't make much headway with my asthma but did notice that my hand eczema was completely cured-wow! First time in 8 years or so that I've been eczema free on my hands in the winter, even with all the washing I do at work (I'm an RN-LOTS of handwashing!) then when I started adding things back in, I started noticing that wheat gave me heartburn every time I ate it, I got bloated, sometimes felt slightly nauseated, and generally didn't feel very well for a few hours to overnight. I cut it out again with good results, then I tried a sticky bun one fateful morning after nearly 2 months of GF-I felt spacey and weird that whole day, slightly nauseated, headache, then the next two days had runs of PVC's worse than I've ever had them before (usually I get them sporadically but no more than a few a day, these two days I was having runs where they would get as close as every other beat-I had had a heart checkup for these a few years ago so knew they were benign, but boy was it uncomfortable!) ever since then (that was in late october) I have been GF (a few questionable incidents after eating out where I developed a headache and nausea and my food might have had soy sauce in it-I will next time make sure none goes in) it seems that the more time I spend away from wheat, the nastier my reactions get. I never bothered to go in for a test because I don't want to go through those PVC's again-I've never had runs like that before or since-and I have no intention of eating wheat again. I do get skin itchiness with gluten free oats lately for 1-2 hours after eating it, so those are out for now, I will try again in a bit with sparse amounts. I also recently put my son, who is 6 1/2, on a GF diet to see if his eczema would respond-he was in the middle of a flare when I started him on it last week, and the flare is significantly better so we'll see how it goes. He states to me that he's less itchy without wheat and has been forward enough to tell others at school and sunday school that he doesn't eat wheat. He's very good at identifying crackers, cookies, bread and muffins already. His school teachers have been very good about making sure he doesn't get wheat items at snack time and one has a celiac friend so I didn't have to do much educating. Anyways, I wanted to see if any of my symptoms sound familiar, I don't know any celiacs and have so far not had the chance to chat with any. Thanks!
Becky

[celiacmaine-iac]

Hi! Welcome to the forum. I can't say whether you have CD or not, but am curious why you think you don't. My first indication that wheat was not my friend was when I started throwing PVCs in my teens every time I ate bread. That was my only symptom until I hit my early 50's, then things progressed into a downward spiral very quickly. FWIW, I also have a sister with CD who goes into A-fib with gluten.

It sounds like you might be on the right track as far as what's causing your problems. It is not for us to decide for you what you should do as far as formal testing, but here's my 2 cents. I believe if at all possible you should try for a formal dx for the sake of your children if for no other reason. As I'm sure you know, there is a genetic component to CD. An iron-clad dx might make your child's pediatrician more receptive to testing. There is a 1:22 chance that your first degree relatives will have CD if you do. Also, it is recommended that first degree relatives be tested at regular intervals to be sure that the disease hasn't manifested itself. Not everyone shows S/S's but they can still be very ill. Perhaps you could run all you sx's by your doctor to see what he/she recommends? Going through the testing could mean a few uncomfortable months while doing a gluten challenge, but you might be ultimately glad you did it. Only you can decide how far you want to take it. We have a thread somewhere on the 250+ sx's of CD. I'll see if I can locate it for you.

Whatever you decide, I wish you good luck. We're all here to help you in any way we can.
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Steph

[celiacmaine-iac]

There are a couple of threads here on why a formal dx is important. Here's a thread listing the many sx's of CD.

As an RN you might find the diagnostic and technical info section very interesting. Lots of good threads there posting the latest research on CD.
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Steph

[cruelshoes]

Hi, washingtonmom. I am from Washington as well. I see your mind is pretty much made up about not going back on gluten, so I won't try to talk you into doing the testing. You might consider doing the testing on your son, however. He hasn't been GF all that long from how you describe it. If you decide to try for a 504 plan for the school, you will need to have a diagnosis. We are able to get a GF school lunch and accomodations made for my son at school, so I am glad we have our diagnosis.

If you need to know about GF resources in the area, let me know. The Seattle area is really great for being GF. I would invite you to our support group, but it would be a it of a drive for you. We are just north of Tacoma. There is one that meets on the Eastside, I believe.
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-Colleen

Where are we going, and what am I doing in this handcart?

[washingtonmom]

There was great info in all your posts, thanks so much! Truthfully, I always thought of CD as being the full blown abdominal pain/anorexia/colitis stuff. But, celiacmaine, hearing about your PVC's piqued my interest-I had never heard about that being involved with CD before, I had just noticed it in myself. I read through that list, and remembered the many trips to the ER for "appendicitis" in my childhood (it never was) as well as all of my adult teeth growing in without the enamel closing properly. I was also anemic growing up, and would have many bouts with painful diarrhea, and run strange fevers for weeks at a time for no reason. *sigh* it's discouraging to think that perhaps if this had been caught I might be asthma free right now. I "grew out" of this for the most part, except for isolated stomach incidents, but I have grown steadily worse with my asthma/skin allergies. I will read over the testing info, and may go in and talk with my allergist about it. My children go to a small private school so the lunch issue isn't as much of an issue (there is no lunch program) but he will always have to be vigilant about contamination I suppose. I am more inclined to pursue diagnosis in him. My allergist has also seen him, so that would be another avenue besides the ped. He had a food allergy scratch test (all negative) about a year ago. His skin is healing rather remarkably fast
Becky

[celiacmaine-iac]

Just keep in mind that CD is not an allergy to gluten, so your allergist may well recommend you see a GI doc.

That list was a real eye-opener for me too! It explained a lot of things I never would have related to CD.
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Steph

[ostrich]

To add to what Steph said, you very well could have an allergy to wheat. However, like Steph said, CD and allergies are two separate things. You could get tested for both.
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Ostrich :>--O==={

Time falls away, but these small hours
These little wonders still remain