Bending To A Near Break

[Razzle Dazzle Brazell]

I am finally feeling like I am getting close to breaking. I finally had all my food allergies tested and all came back negative, including the oats even though I was positive with a scratch test and had a clear reaction when I ate it.

Dont have a copy of results yet but Doc said I was negative for: wheat (obviously not just an allergy), oats, corn, soy, milk protein and yeast. I also had a c1 &c4 test done and they were both negative (and expensive). $500 down the drain.

I know for an absolute fact that my body does not tolerate wheat, or corn. Both make me bloat, wheat last days and corn will be resolved overnight. I also have tested and retested corn over and over and everytime I have it, in whatever isolated form, I have burning tongue tip and lips that burn, blister and swell with numbness and my skin is now splitting in the corners of my mouth. I then bloat and have abdominal cramps. Whatever the test says, I know it causes problems so I am definitely going absolutely corn free.

Can anyone shed some light on all this? Is it likely I am having allergies to these things and scratch AND bloodwork were negative. What about pos. Scratch and neg. Bloodwork?

Sidenote: My doctor is So sweet tho! I love em. He asked how I was over the phone and I said, "Uh good I guess." He sensed that wasnt so and asked if anything else has happened. Dr. Levine. In Chattanooga. I am thankful for a good thorough doctor this time. I am glad he listens and doesnt just think I am a hypochondriac.

[Jestgar]

Allergy tests for food are notoriously inaccurate. Think about it - the reaction happens in your intestine, and they are trying to test your skin or blood.

The only true test for food allergies (IMHO) is to do an elimination diet, and then add the foods back one at a time. Record reactions.

[veronika]

I'll have to agree with Jestgar, an elimination diet is probably the best way to figure out your intolerances. Listen to your body, if you get a consistent reaction from corn, oats, etc. then stop eating them.

Scratch or RAST (blood) tests will tell you if you are allergic to something, but this is not the same as an intolerance. You can still be intolerant to something without being allergic, as food intolerance is a digestive system response rather than an immune system response. Food intolerances present when a food irritates a person's digestive system or when a person is unable to properly digest or breakdown the food.

[Razzle Dazzle Brazell]

Allergy tests for food are notoriously inaccurate. Think about it - the reaction happens in your intestine, and they are trying to test your skin or blood.

The only true test for food allergies (IMHO) is to do an elimination diet, and then add the foods back one at a time. Record reactions.

Yeah ya know it makes sense to me that they may not get results in my bllodwork but then i ask myself why it is that others test positive for their food allergies. I was thinking maybe it is a different pathway or whether it is related to celiac in that it is autoimune reaction sort of thing rather than a typicall allergic reaction.

I'll have to agree with Jestgar, an elimination diet is probably the best way to figure out your intolerances. Listen to your body, if you get a consistent reaction from corn, oats, etc. then stop eating them.

Scratch or RAST (blood) tests will tell you if you are allergic to something, but this is not the same as an intolerance. You can still be intolerant to something without being allergic, as food intolerance is a digestive system response rather than an immune system response. Food intolerances present when a food irritates a person's digestive system or when a person is unable to properly digest or breakdown the food.

okay but do intolerances typically present with allergic like symptoms like the swelling and blistering lips? I just thougt ofr sure it was an allergy.

[veronika]

Yeah ya know it makes sense to me that they may not get results in my bllodwork but then i ask myself why it is that others test positive for their food allergies. I was thinking maybe it is a different pathway or whether it is related to celiac in that it is autoimune reaction sort of thing rather than a typicall allergic reaction.

okay but do intolerances typically present with allergic like symptoms like the swelling and blistering lips? I just thougt ofr sure it was an allergy.

It could still be an allergy, but bloodwork and/or skin prick tests can be inaccurate. Have you ever had intradermal tests performed? They are more accurate (I think) than skin prick tests but do have a higher false positive rate. Swelling and blistering lips are serious reactions, what does your doctor advise you to do (even though your tests are negative)?

[Razzle Dazzle Brazell]

It could still be an allergy, but bloodwork and/or skin prick tests can be inaccurate. Have you ever had intradermal tests performed? They are more accurate (I think) than skin prick tests but do have a higher false positive rate. Swelling and blistering lips are serious reactions, what does your doctor advise you to do (even though your tests are negative)?

He says there is no reason I should eat the foods I feel bothers me and that no one expects me to. I also continue to keep an epi pen with me at all times.

I did have intradermal tests for all the tree pollens and ragweed and grass allergies and such. They were ALL positive. My arm looked like a four-in-a-row board for about three weeks. It wasnt that pleasant because they stuck the needle in too far and drew blood everytime. They didnt realize my upperarm is like all muscle. I think intradermal is supposed to be just under the top layer of skin and shouldnt draw blood but maybe that is typical if your muscular. (not bragging the back of my arm is like all fat :lol:maybe that threw them off).

[bartfull]

Razzle, I'm sorry you are feeling so stressed. I know how you feel because I was in the same boat. But I know you haven't been at it for very long and I would bet you are still healing and that is why you are reacting to so many things. Honestly, if everyone who is first diagnosed or who first suspects celiac could just stick to organic whole foods for a year or two, I think they would find that once they are healed, they would be able to tolerate a lot of the things that they can't at first.

Eliminate high and moderate sals foods, eliminate those nightshades, stay away from gluten of course, but also soy and oats. Go with well washed ORGANIC meats, low sal and well washed ORGANIC veggies, ORGANIC rice, and whatever "treats" you can tolerate. It'll be a pretty boring and sometimes depressing diet, but if you know it's only temporary, I know you can do it.

You will need to supplement because there isn't enough nutrition in such a limited diet. But if you can tolerate ORGANIC sweet potatoes and avocados, and make sure you eat LOTS of organic meat, I think you'll be OK.

I know everyone is different, but if you told me a year ago that I'd be eating corn with no problem, I never would have believed it. But the nutritionist I saw told me to go organic and she was right. Now, even though I prefer organic everything, I can still go to the grocery store and buy just about anything I want that is gluten-free, and I'm OK. I haven't tried adding nightshades back yet, but I will try them soon. And I try not to eat too many high sals foods per week. But my diet is expanding and it's wonderful!

The corn reaction you describe does sound like a true allergy. I'm wondering if you could be "cross reacting". I don't know much about it but I have heard that if you are allergic to tree pollen, there will be some foods that your body "thinks" is tree pollen and so you will have an allergic reation to them too.

Or it could just be that you ARE allergic to corn. Most of the corn in foods is GMO and I'm wondering if you MIGHT be OK with organic, non-GMO corn. If you are having lip burning though, I'd probably not take the cahnce and even try it. Your next reaction could be deadly, and even with an epi-pen in hand, that doesn't mean you would be safe. My father had an epi-pen and it didn't always work for him. So be careful!

[Razzle Dazzle Brazell]

Thx Bartfull for your encouragement, information and advice. I also have the hope that I will eventually be able to add foods back into my diet. Especially dairy and cheese. I do eat organic foods already and I have grown accustomed to the fresher and better taste. The meat at Earth Fare is fresh everyday so that will be an easy one for me.

I hear you lol I will definitely try low sals. I got a lot more to learn about that though. I know I need to make sure my veggies and things are very ripe and a lot of fruits are high sals and that is about it. I did eat some berries yesterday. I felt awesome but I bloated a bit. It was different because it did not hurt, cramp or feel like a lot of pressure. I wonder if it is antioxidant in it that is helpful but sals are bloating me? Hmm.

I really havent been successful looking for supplements that fit my needs around here (most important is gluten and corn free as whey is not a concern for me). I have looked at pills and shake mixes. The one I found online, called Vega, is gluten and top eight allergen free if I remember correctly and has no corn. I may pay to have it shipped I guess that is the only way I will find something to my needs.

[veronika]

Thx Bartfull for your encouragement, information and advice. I also have the hope that I will eventually be able to add foods back into my diet. Especially dairy and cheese. I do eat organic foods already and I have grown accustomed to the fresher and better taste. The meat at Earth Fare is fresh everyday so that will be an easy one for me.

I hear you lol I will definitely try low sals. I got a lot more to learn about that though. I know I need to make sure my veggies and things are very ripe and a lot of fruits are high sals and that is about it. I did eat some berries yesterday. I felt awesome but I bloated a bit. It was different because it did not hurt, cramp or feel like a lot of pressure. I wonder if it is antioxidant in it that is helpful but sals are bloating me? Hmm.

I really havent been successful looking for supplements that fit my needs around here (most important is gluten and corn free as whey is not a concern for me). I have looked at pills and shake mixes. The one I found online, called Vega, is gluten and top eight allergen free if I remember correctly and has no corn. I may pay to have it shipped I guess that is the only way I will find something to my needs.

Be careful about Vega. A lot of their formulations contain wheatgrass and / or alfalfa grass. These grasses may be problematic for people allergic to grass in general (which I think you said you were). I'm allergic to grass and definitely see some reaction to Vega products that I've tried. Go easy if you do end up trying them .

[~**caselynn**~]

Chin up Raz!! You'll figure it out, and you've got lots of people here to bounce questions off of, so it appears! Good luck!! ???

[GottaSki]

Been there....had several rounds of allergy tests over the years - both scratch and blood - all negative. Most recent round was insisted on by my allergist because I had such severe reactions to many foods on my elimination diet last August. Again all negative - doesn't mean I am tolerant of any of the foods I've removed. I still have to carry an epi pen everywhere because I've had two anaphalactic episodes from food and several from my severe intolerance of heat. Ok...that's the really bad stuff.

The really good part that I hang onto each and everyday is -- I don't have an allergy and I haven't had these reactions to different foods my whole life SOOOOOO that should mean if I can heal my stubborn gut, I "should" be able to tolerate many of these foods one day.

You have every right to feel frustrated but can tell from all your posts that you won't let it get you down for long -- Hang in there

[Razzle Dazzle Brazell]

Be careful about Vega. A lot of their formulations contain wheatgrass and / or alfalfa grass. These grasses may be problematic for people allergic to grass in general (which I think you said you were). I'm allergic to grass and definitely see some reaction to Vega products that I've tried. Go easy if you do end up trying them .

Wow that is something I have to be careful about, is the sound of it. Thanks for letting me know. I definitely do need something else to make me ill.

Chin up Raz!! You'll figure it out, and you've got lots of people here to bounce questions off of, so it appears! Good luck!! ???

Aint that the truth I just hope no one gets a concussion from all the questions I have been bouncing around Thx for the encouragement caselynn

Been there....had several rounds of allergy tests over the years - both scratch and blood - all negative. Most recent round was insisted on by my allergist because I had such severe reactions to many foods on my elimination diet last August. Again all negative - doesn't mean I am tolerant of any of the foods I've removed. I still have to carry an epi pen everywhere because I've had two anaphalactic episodes from food and several from my severe intolerance of heat. Ok...that's the really bad stuff.

The really good part that I hang onto each and everyday is -- I don't have an allergy and I haven't had these reactions to different foods my whole life SOOOOOO that should mean if I can heal my stubborn gut, I "should" be able to tolerate many of these foods one day.

You have every right to feel frustrated but can tell from all your posts that you won't let it get you down for long -- Hang in there

That is very interesting. That is my hopeful conclusion. I really think that I may have a leaky gut and that is what my problem is for a lot of the seemingly indetectable allergies I have. Your reasoning makes sense. I once did not have allergies to all these things until I did a gluten challenge so it follows that it was caused by a leaky gut or just a reactive immune system. So if the initial cause is removed or alleviated, I should be able to eat certain things again.

Wow that sounds nerdy. I been hanging around too many philosophers at work.

[GottaSki]

Wow that sounds nerdy. I been hanging around too many philosophers at work.

Sounding nerdy is another symptom of Celiac Disease -- a while back at my one year follow up with my Celiac Doc we had such a lengthy discussion (well over 30 mins - crazy amount of time with a doc these days) about gut permeability in relation to fibromyalgia symptoms that I backed up by referencing medical journals he looks at me and says -- "where do you work? are you involved in medical research?" LOL - I'm in Real Estate, just have had to read way too many medical journals to try to figure out this silly body I've got.

[Razzle Dazzle Brazell]

Sounding nerdy is another symptom of Celiac Disease -- a while back at my one year follow up with my Celiac Doc we had such a lengthy discussion (well over 30 mins - crazy amount of time with a doc these days) about gut permeability in relation to fibromyalgia symptoms that I backed up by referencing medical journals he looks at me and says -- "where do you work? are you involved in medical research?" LOL - I'm in Real Estate, just have had to read way too many medical journals to try to figure out this silly body I've got.

Haha lmbo! That is funny!

Yeah I have not gotten to that stage with the doctor yet. I play dumb at the doctor's office so that they think they have figured out the cause of my symptoms. If you tell them straight out, they dont like it because it robs them of a chance to feed their god complex and then they will object to everything you tell them like youre a hypochondriac. It seems my psychology is working hehe. my allergist seemed to think from the get go that my problem was intolerance and not a wheat allergy.

[~**caselynn**~]

The first day I saw my gastro he looked at me and said " I promise I will fix you"...and that he did. He's awesome, and if it goes to his head, you'd never know it! Last time I saw him he put the questions to me about places to eat and favorite shops haha I guess that's paying it forward!?

[Razzle Dazzle Brazell]

The first day I saw my gastro he looked at me and said " I promise I will fix you"...and that he did. He's awesome, and if it goes to his head, you'd never know it! Last time I saw him he put the questions to me about places to eat and favorite shops haha I guess that's paying it forward!?

You do seem to have a neat doctor. We all appreciate the good ones.

[~**caselynn**~]

You do seem to have a neat doctor. We all appreciate the good ones.

I stumbled on him, my friend's mom had some bowel trouble and went to him and just loved him. So she told me about him, how he was so nice and knowledgable, so I requested him. My primary wasn't keen on sending me 4 hours away but I demanded and I'm glad I did. Having a great doc is well worth the travel time!

[Razzle Dazzle Brazell]

I stumbled on him, my friend's mom had some bowel trouble and went to him and just loved him. So she told me about him, how he was so nice and knowledgable, so I requested him. My primary wasn't keen on sending me 4 hours away but I demanded and I'm glad I did. Having a great doc is well worth the travel time!

Yes I would think so too. Four hours worth of gas cost a lot less than your health is worth. :-)