I went to another allergist for a second opinion after the first one dismissed my Class I result for wheat as a “false positive”. The only feedback I’d gotten from the nurse about this result is that the doctor thought it was too low to be a true positive. However, it was a firm Class I, with the result being right in the middle of the range. After doing some reading and research on this result was when I decided that it wouldn’t be a bad idea to seek the opinion of another allergist.
The new allergist definitely seemed more open to the idea that I was indeed having food allergy reactions. He did much more thorough testing. He decided to test my total IgE level as well as test wheat, barley, rye, and gluten via IgE blood tests. He also ran other blood tests. I had actually stayed off antihistamines long enough for him to perform skin testing as well. All the skin tests came back negative. My follow-up appointment was more than two weeks after this initial appointment, a long time to wait for all the results.
My follow-up appointment was on March 15th. The allergist went over my test results with me. Most everything came back normal. My total IgE level was in the normal range. My result for the gluten IgE test was negative. Among my abnormal results were the IgE results for wheat, barley, and rye. Wheat was still a Class I but was lower this time. It was actually at the very beginning of the range. Barley and rye were equivocal/borderline, Class 0/I. The allergist definitely felt that something was going on with these results. He didn’t suggest that any of these could be “false positive” results.
I asked him again about carrying an epi-pen just in case I needed one, in case I ever developed anaphylactic reactions. He decided to go ahead and write me a prescription. Another abnormal result was a low ferritin level. It was a 14 (normal range of 15-150). We discussed adding an iron supplement to my regimen. I also asked him about testing for vinegar and guar gum, and he seemed to feel the only way to test for these is through a food challenge.
In light of the test results and feedback received at the appointment, I made a few decisions concerning my reactive foods. I decided never to go back to gluten grains, even if I test negative for celiac disease in the future. With barley and rye also being out of the negative range on the IgE blood test, I feel better just erring on the side of caution by continuing to avoid these as well. I’m already gluten-free anyway, so it won’t change anything that I’ve been doing for the past three and a half years. I’ve also decided to continue avoiding vinegar and guar gum, even without allergy testing. When I discussed with the allergist about food challenges for these, he said he would have to set up an appointment with a facility that was a few hours away from where I live. While avoiding these has been annoying, it has not been so much of a hardship that I would want to go through a food challenge to test these to determine whether or not they’re allergies or if I can reintroduce these foods. With the facility being so far away and with all the time involved, it just doesn’t seem worth it. Also, if my reactions to these are true allergies, then I would not want to reintroduce these on my own in case I have severe reactions. I do have two epi-pens now, but I don’t want to take the chance that something might go wrong.
I’ve had issues with my iron level for many years now. I’ve always taken a multivitamin with iron, but my test results would always be too low or on the low side of the normal range. I’ve always been hesitant to supplement more because of how easy it seemed to be to get too much iron from supplements to the point of toxicity. I decided to try to find the supplement from a trusted brand with the lowest amount of iron and add that to my current regimen. I found a 27 mg ferrous gluconate supplement at CVS and decided to give that a try. I’ve used it for three days now and can tell that I feel better. I plan to keep going with it until my next appointment with my gastroenterologist near the end of next month. I plan to ask her to check my ferritin level again to see what kind of difference the supplement is making. Hopefully that will be a long enough period of time to evaluate any change due to the supplement. I’m now getting 45 mg a day of iron from supplements alone, which is supposedly the tolerable upper intake level for adults with healthy iron levels. Hopefully it will be enough to keep me where I need to be, and I certainly hope it won’t be too much.
I believe going to the second allergist was a good idea. I was able to get what I needed from him, mainly the epi-pen prescription and confirmation from him that I do have allergic food reactions. I was also able to decide how to handle my food issues from here on out. I’m going to continue to avoid the foods I’m avoiding now, even if future celiac disease testing comes back negative. For quite some time, I’ve wondered how I was going to handle reintroducing these foods, particularly the non-gluten ones. Now I believe I know what I need to do, and it feels good to have a firm decision in place. Also, trying an iron supplement has seemed to help over the last few days, and hopefully it will continue to help and will keep my iron levels where they need to be.
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