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keylimepie

So Excited To Get Allergy Testing !

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Hello. ;) I am new to this board.

( Story in a nutshell, sortof ! ) I have a positive ANA as of 2.5 years ago. Have inflamation in both knees, had them drained lots of times, fun... and an overall body aching. My other tests gave no spicific disease other than autoimmune, although my Rhum. Dr. loves to call it Lupus. Anyway been on Prednisone, Methotrexate and lots of ibprofin for 5 months now. FINALLY decided to go to a natural dr. to seek answers. ( mind you it costs 275.00 for just the consultation !) Wowzers !! After all these meds, i would have to say that i only feel about 50% better... My natural dr. says it is probably a food allergy. I would have never even thought of it if i didn't go ! Celiac doesn't run in my family. I have two kids and after each pregnancy, i felt worse.

I did a one week elimination diet on my own- cutting out gluten, dairy, eggs, preservitives, red meat, chicken, sugar, citrus and i forget what else. I started feeling great within two days !!! I had to stop that diet because i wanted the allergy testing to be "accurate" and besides, god it was hard to do !!!

Funny thing, my natural dr. wanted my previous labs sent to him. When i called my Rhum. Dr. to send me my lab blood test results she asked why? all suspiciously. Well, she never sent them !! Nice, huh ? Well i know they are legally mine. All i needed was my positive ANA number which is 1160.

Just wondering if anyone else experienced symptoms like mine and cut out gluen and felt better ??? I am so looking forward to this allergy testing next week !!! Thanks for listening.

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Celiac.com Sponsor (A8):

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Hi, and welcome to these boards!

Unfortunately, celiac disease is not an allergy, and won't show up on allergy testing. You need to see a GP or a GI for blood testing to find out about celiac disease. And in order for those tests to be accurate, you need to be consuming gluten.

Mind you, the diet trial is a valid test, too. I don't have an official diagnosis, but don't feel I need one. I know how I feel whenever I get glutened! That is enough evidence for me.

You have a right to your test results. Let them know you will be there on (whatever day you choose), and to please have copies of all your test results ready for you to pick up. Don't take no for an answer. They may have had proof you have celiac disease, and didn't tell you. You wouldn't be the first one here that happened to!

Don't ask for your test results, TELL them you are picking them up. Be firm, don't let them confuse you with why it won't be possible for you to have your test results. If you have to, threaten them with hiring a lawyer.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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As mentioned a dietary elimination and challenge is a valid way of diagnosing gluten intolerance. You can also go through enterolab for testing and you do not have to be eating the offending foods. For true allergy testing you do not have to be eating the offending substance, the way many test for true allergies is by injecting small amounts of the allergin under the skin and looking for a reaction. But gluten is not an allergy it is an intolerance. Gluten and at times soy, casien and eggs can be an intolerance reaction, that is a autoimmune reaction and not a histamine or allergy reaction.

A GI doctor would blood test you and then do an endoscopic exam. You would need to be consuming gluten for these to be accurate. Even then false negatives abound. If you want an actual doctor derived diagnosis you need to see a GI doctor.

However you do not need a doctors permission to go gluten free and if you do go the conventional route and go to a GI you should still go gluten free after testing for at least a couple of months to see if it helps. As mentioned you have a legal right to those test results AND to copies of your entire records. I would demand full copies of all records, including all test reports and doctors notes. You should get copies of these anyway.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hi. Thanks for replying back so quickly ! I am confuesed now on what to do. This allergy testing can cost up to $400.00 or more ! I am due to go there on monday for my appt. I guess i should have just stuck it out with my elimination diet and go from there. I have been reading all over the internet about food allergies/intollerences, ect... I just narrowed it down pretty much to gluten, that's why i looked up this forum. I could be wrong though... What do you think i should do ?? Maybe just go on monday to get this allergy testing over with? And if nothing turns up, go to the G.I. ? I just want to find an answer to all of this !! I kind of want to just go with the thoughts of my natural dr. since he seems to be leading me in the right direction. When i questioned him about the possibility of this being a food allergy, he said to me that it prob. is. I don't know :unsure:

And about my Rhum. dr. I know i can get a hold of my records, just amazing that she probably feels insulted that i might find the answer through someone else...

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Hi. Thanks for replying back so quickly ! I am confuesed now on what to do. This allergy testing can cost up to $400.00 or more ! I am due to go there on monday for my appt. I guess i should have just stuck it out with my elimination diet and go from there. I have been reading all over the internet about food allergies/intollerences, ect... I just narrowed it down pretty much to gluten, that's why i looked up this forum. I could be wrong though... What do you think i should do ?? Maybe just go on monday to get this allergy testing over with? And if nothing turns up, go to the G.I. ? I just want to find an answer to all of this !! I kind of want to just go with the thoughts of my natural dr. since he seems to be leading me in the right direction. When i questioned him about the possibility of this being a food allergy, he said to me that it prob. is. I don't know :unsure:

And about my Rhum. dr. I know i can get a hold of my records, just amazing that she probably feels insulted that i might find the answer through someone else...

This is only my opinion mind you but if I was going to spend $400 and I had a positive gluten response and I knew eliminating it made me feel better I would cancel the allergist appointment for now and contact enterolab. They do stool testing for antibodies which can be more accurate than blood testing. They can also check for the genes for gluten intolerance and celiac but just finding the genes is not diagnostic. However finding the genes, and anitbodies and a positive result to being gluten free is pretty diagnostic IMHO. You can also just continue being gluten free for a few months and seeing how much things improve. I don't know how much medication and supplements you are on but you need to be really careful to check them. The labeling laws do NOT apply to drugs, now how stupid is that.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hello. Question? If drugs, suppliments, ect... aren't labled for gluten, how do you find out if they are ? Can you call your local pharmacy to find out? I am so tempted to start going gluten free ( the day after Thanksgiving, of course ?) and to cancel or postpone my dr. appt. I really don't know. I did e-mail my Natural dr. to ask if by chance they do gluten testing there? They will prob. say the same as you as far as not being able to really tell if you are, without doing the elimination test for it. The lab that you mentioned, i never heard of. I am in NJ and i have only heard of Lab Corp Of America. Maybe they do the same kind of testing there. Thanks for all of your help ! I'm sure i will be asking more questions. :D

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Hello. Question? If drugs, suppliments, ect... aren't labled for gluten, how do you find out if they are ? Can you call your local pharmacy to find out? I am so tempted to start going gluten free ( the day after Thanksgiving, of course ?) and to cancel or postpone my dr. appt. I really don't know. I did e-mail my Natural dr. to ask if by chance they do gluten testing there? They will prob. say the same as you as far as not being able to really tell if you are, without doing the elimination test for it. The lab that you mentioned, i never heard of. I am in NJ and i have only heard of Lab Corp Of America. Maybe they do the same kind of testing there. Thanks for all of your help ! I'm sure i will be asking more questions. :D

Sometimes a pharmacist can tell you, sometimes you can get the info from gluten free lists on line, sometimes if you post someone else will have checked. Your regular GP can order a celiac blood panel for you if you are still eating gluten. Which I am assuming you are by saying you are going to wait till after Thanksgiving. I was diagnosed on Nov 20th 5 years ago, even that first year I managed to make a good gluten-free Thanksgiving dinner. We had turkey with wild rice stuffing, sweet potatoes, mashed garlic potatoes, corn, peas, relishes etc and I made a cheesecake with gluten free cookie crumbs.

Enterolab can be found over the net at www.enterolab.com They do everything by mail at this point.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thanks so much for the info. ! It's funny, a couple of people in my husband's side of his family has celiacs. My sister in-law is a pro, like yourself with making good meals glutin free. Your Thanksgiving dinner sounds good ! I have decided to go for the allergy testing and then do a glutin free diet. This way all the other bases are covered just incase. Honest to god, i hope i do have Celiacs so i can start eating correctly and get rid of this aweful authritis !! You are so lucky that it is working for you. Coincidentallly, my hands started hurting a few days ago for the first time... i just feel like i am on a downward spiral ! If this works for me, i will kiss everyone!! ( except for Dr. Silver, my Rhum dr. !!!) I will still look into the lab info. you gave me. Thanks !!!!!!!!!!

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Thanks so much for the info. ! It's funny, a couple of people in my husband's side of his family has celiacs. My sister in-law is a pro, like yourself with making good meals glutin free. Your Thanksgiving dinner sounds good ! I have decided to go for the allergy testing and then do a glutin free diet. This way all the other bases are covered just incase. Honest to god, i hope i do have Celiacs so i can start eating correctly and get rid of this aweful authritis !! You are so lucky that it is working for you. Coincidentallly, my hands started hurting a few days ago for the first time... i just feel like i am on a downward spiral ! If this works for me, i will kiss everyone!! ( except for Dr. Silver, my Rhum dr. !!!) I will still look into the lab info. you gave me. Thanks !!!!!!!!!!

Glad to hear you are going to give the diet a try. Please bear in mind that the allergy testing WILL NOT give you any answers as to celiac. It will tell you if you have an allergy but it will not tell you if you are having an intolerance reaction. I was diagnosed by an allergist, MD not naturopath, he did the skin testing then put me on an elimination diet. I tested positve to 98 different substances with conventional skin testing. This actually clued my allergist into celiac, the only thing I wasn't positive for was beech trees. Some allergists might have simply put me on more drugs but this guy was very old and very smart. He realized my immune system was in overdrive, big time my body was destroying itself and he did not address all the allergies except to tell me they would likely resolve gluten-free. He was right they did.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Wow, that's great !! My dr. practices natural and is also a md as well . I am hoping he will do the same type of thing with me. This center where he is located is known throughout the USA. It is the Magaziner center in Cherry Hill, NJ. When you had authritis, where were you affected ? I have it bad in my knees and a little bit in hands. I also have butterfly rash on my cheeks, only when in the sun. I would be afraid to not take my medicine only to see what kind of bad shape i would actuallly be in... God, before i had kids, i was a- okay !!! Have any of your own ??? I read that pregnancy changes everything in your body.

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Wow, that's great !! My dr. practices natural and is also a md as well . I am hoping he will do the same type of thing with me. This center where he is located is known throughout the USA. It is the Magaziner center in Cherry Hill, NJ. When you had authritis, where were you affected ? I have it bad in my knees and a little bit in hands. I also have butterfly rash on my cheeks, only when in the sun. I would be afraid to not take my medicine only to see what kind of bad shape i would actuallly be in... God, before i had kids, i was a- okay !!! Have any of your own ??? I read that pregnancy changes everything in your body.

My arthrits was worst in my hands, hips, knees and back. The most obvious damage was done to my hands with deformities to the knuckles and joints in the fingers. The deformity is of course still there but I have no pain anymore and the progression has stopped completely. I also have problems with the sun, or I have previously, I worked in my garden for hours this year with not a single issue. Being in the sun used to make me feel weak very quickly. I have two live children, with each pregnacy I became sicker. Pregnancy is one of the most common triggers in women for celiac.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hello ! Just found out i have allergies to milk, eggs, soy and cain sugar. Not to wheat though ! My allergist said there's no need to do celiacs testing if i have no allergy to wheat. Does that sound right ? I am back to eliminating wheat as well as the other foods, just in case and plan to bring it back if i feel better in a couple of weeks. My dr.says i have leaky gut syndrome. Anyone know what kind of diet works well for them ?? Thanks and hi Raven !

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Hello ! Just found out i have allergies to milk, eggs, soy and cain sugar. Not to wheat though ! My allergist said there's no need to do celiacs testing if i have no allergy to wheat. Does that sound right ? I am back to eliminating wheat as well as the other foods, just in case and plan to bring it back if i feel better in a couple of weeks. My dr.says i have leaky gut syndrome. Anyone know what kind of diet works well for them ?? Thanks and hi Raven !

No it is not right. An allergy to wheat is different than Celiac. A person can have both, but NOT being allergic to wheat does NOT mean you don't have Celiac!

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Here are some links which at some point explain the difference between a wheat allergy and celiac or gluten intolerance. They are not the same:

http://www.nowheat.com/grfx/nowheat/primer/intro.htm

http://www.foodallergy.org/allergens/wheat.html

http://www.celiaccenter.org/faq.asp#allergy

http://americanceliac.org/celiac disease.htm

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