How Do I Prepare?

[jenngolightly]

I have been gluten free for 2.5 years, but in the past year have noticed a recurrence of some of the issues that I had when eating gluten. I know it's a different food(s) that I'm reacting to because the symptoms are different than when I get cc'd, or when I was eating gluten before diagnosed.

I don't know what foods I'm reacting to, so my doc has referred me to an allergy and immunology clinic for further testing. I know they have me scheduled for skin tests, but I don't know what else I should prepare for the appointment.

Does anyone have suggestions please?

[jststric]

You really don't need to do anything. I went thru all that and none of the things I had discovered was bothering me showed up on the test. And a few things that did had never given me problems! To say my confidence in the medical community is pretty low is an understatement. In the end, it will be up to you to monitor and know your own body.

[jenngolightly]

You really don't need to do anything. I went thru all that and none of the things I had discovered was bothering me showed up on the test. And a few things that did had never given me problems! To say my confidence in the medical community is pretty low is an understatement. In the end, it will be up to you to monitor and know your own body.

So it would be helpful for a little guidance on that? I know something(s) is making me sick. How do I figure out what it is? I know that sounds dumb... but I'm at a loss because I think it's multiple things and I don't know how to test myself.

Also, my doctor gave me an epi-pen because some of my reactions include swelling, hives, itching...

[missy'smom]

I have been to two allergists and had skin testing done twice. The first was not helpful but the second has been very helpful-both allergist and tests- so embrace the process and see what comes of it. One allergist recommended that we bring an old T-shirt to wear after testing in case the ink gets on our clothes. Our second allergist was very careful and took good care of us afterward-cleaning up each spot and applying anti-itch ointment, so we found it unnecessary. Maybe bring something to read? One allergist(the better one)did more extensive testing(over two appointments-environmental one day and an extensive food panel the other) and more slowly so we had alot of time to kill. We were concerned about more severe reactions on a few for me so they just let the serum sit on my skin first and then after no reaction, pricked it. They also did just a few at a time for certain ones for the same reasons. The other allergist was just basics so we were done sooner.

After food allergy testing, our new allergist put us on an elimination/challenge diet to further help determine how/if we are reacting to the foods that we tested positive to.

[Fiddle-Faddle]

It depends on what you are looking for with the testing.

If you are looking for official confirmation of celiac disease/gluten intolerance, then allergy testing is completely useless, because those are autoimmune disorders, NOT allergies. They won't show up at all on allergy tests.

If you are looking for a possible wheat allergy, either in addition to celiac/gluten intolerance, or instead of it, then you might indeed find some answers with allergy testing.

But you can certainly narrow it down simply by your own experience? Do you react to barley and rye, or only to wheat? If you react to barley and rye, then even if you have a true wheat allergy, you also have some kind of gluten intolerance, possibly full-blown celiac.

Either way, the cure is the same. Stay away from gluten!

[jenngolightly]

I have been to two allergists and had skin testing done twice. The first was not helpful but the second has been very helpful-both allergist and tests- so embrace the process and see what comes of it. One allergist recommended that we bring an old T-shirt to wear after testing in case the ink gets on our clothes. Our second allergist was very careful and took good care of us afterward-cleaning up each spot and applying anti-itch ointment, so we found it unnecessary. Maybe bring something to read? One allergist(the better one)did more extensive testing(over two appointments-environmental one day and an extensive food panel the other) and more slowly so we had alot of time to kill. We were concerned about more severe reactions on a few for me so they just let the serum sit on my skin first and then after no reaction, pricked it. They also did just a few at a time for certain ones for the same reasons. The other allergist was just basics so we were done sooner.

After food allergy testing, our new allergist put us on an elimination/challenge diet to further help determine how/if we are reacting to the foods that we tested positive to.

These tips were very helpful. I don't know what to expect, so I'll bring some reading material and something softy to wear. I plan on going back to work the next day. I hope that's reasonable. My pcp expects that in addition to the skin testing they'll do the elimination testing. I think I'm allergic to lemons. But I only sometimes react to them. Weird. I hope this helps narrow things down.

[jenngolightly]

It depends on what you are looking for with the testing.

If you are looking for official confirmation of celiac disease/gluten intolerance, then allergy testing is completely useless, because those are autoimmune disorders, NOT allergies. They won't show up at all on allergy tests.

If you are looking for a possible wheat allergy, either in addition to celiac/gluten intolerance, or instead of it, then you might indeed find some answers with allergy testing.

But you can certainly narrow it down simply by your own experience? Do you react to barley and rye, or only to wheat? If you react to barley and rye, then even if you have a true wheat allergy, you also have some kind of gluten intolerance, possibly full-blown celiac.

Either way, the cure is the same. Stay away from gluten!

No, I'm sure I have celiac and I haven't eaten gluten for a few years - barley, wheat, rye, or oats. I'm looking for what else I'm allergic/intolerant of. Soy maybe? I'm pretty sure lemons... Maybe olive oil, too. But I'm having a tough time figuring out on my own because I'm not too insightful. I don't know what to ask the doctors, or what to prepare for them. I actually got a packet in the mail yesterday to fill out and bring with me. That was helpful.

Thank you for your help. I do wish I was more capable of interpreting my experiences.

[missy'smom]

I'm looking for what else I'm allergic/intolerant of. Soy maybe? I'm pretty sure lemons... Maybe olive oil, too. But I'm having a tough time figuring out on my own because I'm not too insightful. I do wish I was more capable of interpreting my experiences.

I felt much the same way. Just too much to process. Coming out of the allergist's office I at least had a list to start with and while I couldn't have come up with the list myself, many of the foods that showed up on it were not completely a suprize. I wouldn't have guessed them as being a problem but they made sense. It's been an eye opening experience that's given me unexpected insight into my problems. I hope it'll be helpful for you.

[mygfworld]

Sometimes a food log for 3 days to a week is very helpful for doctors. Just log everything you eat and any reactions you are having. Bring a good book or music. You may want to ask if they will do any allergy testing during that appt. If so, avoid any benadryl for a few days before.

BTW I have gone thru various stages of health and new diseases. It's not uncommon for me to become "allergic" to various foods for a little while until I get the new disease diagnosed. Then after a while I can eat the foods again. So it's not a real histamine type allergy reaction. And yes I'm a biopsy diagnosed celiac. I also reaction to touching wheat.

[Johnstan]

Something I found helpful, in my frustration, was to find a qualified naturopath that could test for intolerances and sensitivities to a wide range of things. This is how I found my gluten sensitivity problem. For years (and now that I have retrospect) my varied symptoms have screamed "gluten intolerance" and it took a naturopath spending 2 hours with me discussing my history and doing sensitivity testing to find it. This was then confirmed by a Dr(not an allergist!). It does make sense though. Dr.'s often treat symptoms and naturopaths go to the root of the problem. Dr.'s have very limited time to spend with you during a visit (I think the average visit is 7 minutes) and naturopaths have more time to spend. She was very thorough. It's been helpful for me to use both modalities in my health care. It might be helpful to find someone reputable in your community. Ask around? I tell you, you have to be your own best advocate, listen to your body, and pull out the CSI detective tricks sometimes to figure things out but you do know yourself best.

[jenngolightly]

I felt much the same way. Just too much to process. Coming out of the allergist's office I at least had a list to start with and while I couldn't have come up with the list myself, many of the foods that showed up on it were not completely a suprize. I wouldn't have guessed them as being a problem but they made sense. It's been an eye opening experience that's given me unexpected insight into my problems. I hope it'll be helpful for you.

I was very sick last week, but couldn't nail down the problem. Almost the same reactions that I get from gluten - almost... that's why I know it's not gluten. I'm hoping to get the same experience as you had. At least a list to narrow down the culprit(s)! My dr. said that after the allergy testing, we'll do elimination testing. Eeks. I'm not looking forward to that...

[jenngolightly]

Sometimes a food log for 3 days to a week is very helpful for doctors. Just log everything you eat and any reactions you are having. Bring a good book or music. You may want to ask if they will do any allergy testing during that appt. If so, avoid any benadryl for a few days before.

BTW I have gone thru various stages of health and new diseases. It's not uncommon for me to become "allergic" to various foods for a little while until I get the new disease diagnosed. Then after a while I can eat the foods again. So it's not a real histamine type allergy reaction. And yes I'm a biopsy diagnosed celiac. I also reaction to touching wheat.

I got a packet in the mail with a load of questions to answer. You're right. It also said not to take benadryl, claritin, etc.

I'm freaking out that I'm going to be incapable of going back to work the next day. I didn't realize that allergy testing is such a process. I hope I don't react too terribly.

I'll keep a food diary this week. Thanks.

[jenngolightly]

Something I found helpful, in my frustration, was to find a qualified naturopath that could test for intolerances and sensitivities to a wide range of things. This is how I found my gluten sensitivity problem. For years (and now that I have retrospect) my varied symptoms have screamed "gluten intolerance" and it took a naturopath spending 2 hours with me discussing my history and doing sensitivity testing to find it. This was then confirmed by a Dr(not an allergist!). It does make sense though. Dr.'s often treat symptoms and naturopaths go to the root of the problem. Dr.'s have very limited time to spend with you during a visit (I think the average visit is 7 minutes) and naturopaths have more time to spend. She was very thorough. It's been helpful for me to use both modalities in my health care. It might be helpful to find someone reputable in your community. Ask around? I tell you, you have to be your own best advocate, listen to your body, and pull out the CSI detective tricks sometimes to figure things out but you do know yourself best.

Sounds like you have a good doctor. I love my pcp! She suggested that I had celiac on one of my firsts visit to her! After all those years of being shuffled around, what a gem.

She wants me to do an elimination diet after the allergy testing, but under the care of an allergist. She's a big believer in specialists. I have doctors for everything - bones, neurology, gi...and so on, but she coordinates them all and manages my health care. I love it. It works for me. Also, since I have a complicated health history, I get to spend more than 7 minutes with her when I visit.

I don't know the CSI detective tricks, and feel quite bewildered about myself most of the time. If you've got the tricks up your sleave and care to share them, please do!