Wheat allergy - celiac testing needed?

[Cookieface]

I started noticing a pattern with stomach issues and body rash/eczema after eating certain foods. Around September 2017, my doctor referred me to an allergist and a celiac blood test.  I went for the allergy testing and was told that I am allergic to wheat, rye, barley, and oats. 

I began a gluten-free diet slightly before that, so around September 2017, and then around November 2017 decided to get the blood test so I started eating some form of gluten-daily.  Then, when I went to get a blood test I was told it would be $200, so I opted not too. My doctor said that either way I would have to avoid wheat. So from November 2017 I've been on a gluten-free diet.

My family and I went to a Hakka Chinese restaurant the other day and I stuck to rice, but was told by the waitress that "everything cornstarch" so I had some chicken (sweet & sour, chili, and curry).  After, I had terrible upset stomach and rash, and wondering if it was cross-contamination or maybe they don't understand wheat-free or gluten-free.

I guess I am wondering if, even though I need to avoid anything wheat/barley/rye/oats due to my allergy, should I go for celiac-testing? Would it be advantageous to know that I am celiac, and how so?  

And, if testing should be done, how long would I need to eat gluten for before undergoing the blood test? I've read 6 weeks and that seems a lot, especially as I am allergic to begin with and would be exposing myself to an allergen daily for 6 weeks...??

Thank you in advance.

 

 

[Lorjenn22]

1 hour ago, Cookieface said:

I started noticing a pattern with stomach issues and body rash/eczema after eating certain foods. Around September 2017, my doctor referred me to an allergist and a celiac blood test.  I went for the allergy testing and was told that I am allergic to wheat, rye, barley, and oats. 

I began a gluten-free diet slightly before that, so around September 2017, and then around November 2017 decided to get the blood test so I started eating some form of gluten-daily.  Then, when I went to get a blood test I was told it would be $200, so I opted not too. My doctor said that either way I would have to avoid wheat. So from November 2017 I've been on a gluten-free diet.

My family and I went to a Hakka Chinese restaurant the other day and I stuck to rice, but was told by the waitress that "everything cornstarch" so I had some chicken (sweet & sour, chili, and curry).  After, I had terrible upset stomach and rash, and wondering if it was cross-contamination or maybe they don't understand wheat-free or gluten-free.

I guess I am wondering if, even though I need to avoid anything wheat/barley/rye/oats due to my allergy, should I go for celiac-testing? Would it be advantageous to know that I am celiac, and how so?  

And, if testing should be done, how long would I need to eat gluten for before undergoing the blood test? I've read 6 weeks and that seems a lot, especially as I am allergic to begin with and would be exposing myself to an allergen daily for 6 weeks...??

Thank you in advance.

 

 

 

[Jmg]

Hi and welcome

1 hour ago, Cookieface said:

My family and I went to a Hakka Chinese restaurant the other day and I stuck to rice, but was told by the waitress that "everything cornstarch" so I had some chicken (sweet & sour, chili, and curry).  After, I had terrible upset stomach and rash, and wondering if it was cross-contamination or maybe they don't understand wheat-free or gluten-free.

Corn starch is fine, but most soy sauce contains gluten and it's widespread in chinese cooking. So they're rarely the best places to eat if you're sensitive. 

1 hour ago, Cookieface said:

I guess I am wondering if, even though I need to avoid anything wheat/barley/rye/oats due to my allergy, should I go for celiac-testing? Would it be advantageous to know that I am celiac, and how so?  

This may be of use.  

It may also be worth clarifying with the doctor what result you had on the original test. You mention allergy and celiac tests, the two are quite different. You've been told to avoid wheat, rye, barley which all contain gluten and oats which contain a similar protein but which many celiacs can tolerate. Do you have a copy of this test you could perhaps post here?

2 minutes ago, Lorjenn22 said:

And, if testing should be done, how long would I need to eat gluten for before undergoing the blood test? I've read 6 weeks and that seems a lot, especially as I am allergic to begin with and would be exposing myself to an allergen daily for 6 weeks...??

6-8 weeks is about standard for a gluten challenge. 

 

 

[Lorjenn22]

yes!! soy!!!! anything w soy n chinese all together! unless u make it @ home w gluten-free soy sauce! hv you been to a gi specialist?? i don’t lnow your situation w your insurance but if you really concerned it doesnt seem like your fam doc is totally up on this and gi docs are! mine told me chinese food is number one culprit because soy sauce!! plus there your more likely hv cross contamination issues! i used eat that alot though never agreed w me now im like, oh!!! in general avoid bbq sauce unless its sweet baby rays, ranch dressing unless hidden valley , even some vinegrets hv wheat, or barly, avoid wheat, barly n rye, oats and read...lables like on pickles! i really think you should go to gi specialist bc they also give you more information!! goodluck

[Cookieface]

Thank you both.

 

My fiance suggested to be tested for a corn or cornstarch allergy because of the restaurant ordeal, but I reminded him that there was likely cross-contamination or maybe they just didn't know what I was trying to explain.

@Jmg thank you for the link. From what I read, the advantage of being tested for Celiac would mean a higher level of scrutiny and monitoring of potential intestinal/immune system side effects.

 

I will post back in the morning with the allergy test results (it may be in my purse or a drawer) - it was skin prick test and he just circled the allergens which included wheat, rye, barley and oats.

@Lorjenn22 yes that's true, my family doctor doesn't seem too concerned because since I have the wheat allergy, he said I have to be on a gluten-free diet anyway so celiac testing wouldn't really make a difference.

My fiance recommended I post here to see what the benefits are of undergoing the gluten-challenge, testing, etc. because from his point of view (as my doctor's) "you have to avoid wheat anyway".

 

ETA: I have not been to a GI specialist - only allergist and family doc who gave me the requisition for a blood test for "celiac profile", but I'd have to do a gluten challenge when I'm already allergic to wheat.

 

 

 

[cyclinglady]

I think you should listen to your doctor.  If you have a confirmed wheat allergy (IgE and NOT IgG), a gluten challenge could be dangerous.  Consider a second opinion from another board certified allergist.  That might convince you.  

Read up on celiac disease dietary tips, as they can help someone with a wheat allergy.  At this point, eating out could be dangerous, especially if you are not knowledgeable.  Were you issued an EPI pen?  Ask for a referral to a dietitian.  

A true wheat allergy could become deadly in minutes.  It would take a long time (years) to die from celiac disease......

[Ennis-TX]

The Newbie 101 sections here would have some good tips for avoiding wheat/gluten, dealing with a safe cooking enviroment etc. I would avoid eating out aside from chains that have dedicated gluten free menus and are trusted...many are gluten free/wheat free fad menus and the staff/kitchen can not truly deal with the whole CC issue with gluten/wheat.
I have a old food list here for gluten-free food brands and how to get them if you would like. PS if doing homemade Chinese look up Coconut Secret sauces, they make teriyaki, garlic, and a coconut amino sauce that works like soy sauce without any of the issues.

[Cookieface]

On 04/01/2018 at 1:29 AM, cyclinglady said:

I think you should listen to your doctor.  If you have a confirmed wheat allergy (IgE and NOT IgG), a gluten challenge could be dangerous.  Consider a second opinion from another board certified allergist.  That might convince you.  

Read up on celiac disease dietary tips, as they can help someone with a wheat allergy.  At this point, eating out could be dangerous, especially if you are not knowledgeable.  Were you issued an EPI pen?  Ask for a referral to a dietitian.  

A true wheat allergy could become deadly in minutes.  It would take a long time (years) to die from celiac disease......

Sorry for the very delayed reply - I got swept up in my baby's birthday planning and daycare all at once, and forgot to check back.

I was not issued an Epi-Pen and I can't for the life of me find the allergy paper copy he gave me, but it was just a list of food/environmental names circled where the skin-prick test indicated I reacted.  I tested mildly for milk and across the board for wheat, rye, barley, and oats.

@Ennis_TX thank you for that point.  I went to a restaurant with a friend a couple weeks ago and noted that although they offered "gluten-free" stuff, it was marked with an asterisk and note saying they use the same oil for wheat products!

So, from this thread, and please correct me if I am wrong, but because I have a diagnosed wheat allergy, I should NOT get tested for celiac?  That is fine by me, I just wanted to  clarify if there was any reason to get the confirmation apart from satisfaction in knowing one way or the other.  I wish I'd done that test before the allergy and going gluten-free.  It would explain a lot of symptoms I've had over the years!

And lastly, whether or not I am "diagnosed" as celiac, because of the wheat allergy I do need to eat a celiac diet, correct?

 

Thank you again, everyone.

[Ennis-TX]

7 minutes ago, Cookieface said:

Sorry for the very delayed reply - I got swept up in my baby's birthday planning and daycare all at once, and forgot to check back.

I was not issued an Epi-Pen and I can't for the life of me find the allergy paper copy he gave me, but it was just a list of food/environmental names circled where the skin-prick test indicated I reacted.  I tested mildly for milk and across the board for wheat, rye, barley, and oats.

@Ennis_TX thank you for that point.  I went to a restaurant with a friend a couple weeks ago and noted that although they offered "gluten-free" stuff, it was marked with an asterisk and note saying they use the same oil for wheat products!

So, from this thread, and please correct me if I am wrong, but because I have a diagnosed wheat allergy, I should NOT get tested for celiac?  That is fine by me, I just wanted to  clarify if there was any reason to get the confirmation apart from satisfaction in knowing one way or the other.  I wish I'd done that test before the allergy and going gluten-free.  It would explain a lot of symptoms I've had over the years!

And lastly, whether or not I am "diagnosed" as celiac, because of the wheat allergy I do need to eat a celiac diet, correct?

 

Thank you again, everyone.

Correct, wheat is a allergy to you like corn is for me I imagine....it started off minor for me actually...just fever....it got worse over the years...now I get blood blisters in my mouth and s$#& blood when I eat it.....if it touches my skin I break out in a rash...>Allergies have tendencies to get worse or better as we get older and like celiac being reintroduced later to the culprit can cause different reactions. Worse case with a allergy is anaphylactic shock, this is why we mentioned a epi pen....PS I have a friend who works for a CVS, if you need a epi pen CVS has generics and coupons they can apply to checkout if they know how that gets you them for less then $15 each.

We said avoid the gluten testing for celiac btw because it involves eating gluten every day for weeks to ramp up your antibodies to be tested....if you allergic...well you see.

[cyclinglady]

Ennis is correct.  Doing a gluten challenge to get celiac testing could be dangerous.   However, your allergies might not be severe as your allergist did not issue you an EPI pen (most allergy testing is not very accurate.   You should discuss a possible challenge with your allergist and a GI.  

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If you are confident in your wheat allergy diagnosis, you need probably need to be extra vigilant on a gluten free diet.  No cheating and watch for cross contamination.  

 

[Awol cast iron stomach]

1 hour ago, cyclinglady said:

If you are confident in your wheat allergy diagnosis, you need probably need to be extra vigilant on a gluten free diet.  No cheating and watch for cross contamination.  

I second this statement upon my experience as the more strict I am it appears the more sensitive I am. I have read that others also became more sensitive once diagnosed and on the diet.  It was determined during my months of testing and under Dr care at a clinic, I am not IgE  mediated allergy for wheat, rye, barley, but my Dr did state I had a delayed reaction/sensitivity to a skin test for rye and barley that was confirmed. Despite being non IgE mediated, I was unable to finish a 2 week gluten challenge... I'll spare the details.  Ironically I did show to be wheat non IgE delayed skin hypersensitive, but I blow up like a macy day balloon if fed it , so something is up there just not medically named  

I also have the corn issues and cow milk too.  My children also appear to have my issues and my daughter is currently struggling with it (has lost much weight) as we work to heal her. I have a cousin diagnosed Gold standard Celiac. I was misdiagnosed IBS for 2 decades before finally being diagnosed  and a lifetime genealogical family history of GI illness, disease,problems including cancers. 

 

Good luck to you and keep us posted.

 

 

[Snoops]

Hey everyone...

Your comments are all really helpful as I too was considering the test for celiac. I went gluten free just over a year ago after being confirmed as wheat allergic (no Epi pen) and over 15 year IBS diagnosis, it was a process i was a little nervous about, having to go through the pain for that amount of weeks. It does worry me that I may be doing my body damage by not knowing though. I don't cheat, but am still learning, so I still get sick. And the whole cosmetic ingredients really confuses me !