Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

My Daughter's Celiac Testing Was Negative...but Allergy Testing +
0

7 posts in this topic

She had her biopsy last month and it was negative. However she was diagnosed with eosiniphilic esophagitus. I went ahead and had her get allergy testing yesterday and she was positive to wheat, barley and rye...along with peanuts, hazelnuts, cashews, corn, soy, sunflower and a few others. So since she knows "gluten" has bothered her she will be staying away from that. She's also had a reaction to nutella the last two times she's ingested it...she's staying away from it. The allergist figured it would be best to stay away from wheat, soy and sunflower (thinking those must have been the highest on her reaction). At least she has a medical reason to stay away from those things now. I will be calling her college to see if we can schedule a dietitian appointment to make sure she is finding foods in the cafeteria that she can eat. If she has a hard time we will push for her to get out of the meal plan and possibly dorm for next year.

Still happy our household is gluten free now. My other kids and myself are feeling so much better despite the negative biopsies.

edited to to add...I meant to post this in the kids section...but oh well. :P

0

Share this post


Link to post
Share on other sites


Ads by Google:

There is now a proven link between EE and Celiac.

You really had a stroke of good luck to have caught some sensitivities through allergy testing. That didn't happen for my daughter and we had to go through elimination diet to determine what foods "trigger". We have also noticed an airborn trigger, late fall in the mid west ~ probably ragweed.

My advice is to keep a very detailed journal. Eosinophils, once activated, can stay active for 12 days. So a person is trying to remember back almost 2 weeks what they have been exposed to. :blink: Knowing that some cases have airborn "triggers" you have to write the air quality and locations you have been to.

0

Share this post


Link to post
Share on other sites

While on tour at a potential college for my daughter, I personally stopped in the cafeteria and asked if they had gluten free items. I was assured they did and the manager even took time to speak to me. As we were talking, he said, "We make sure to have Semolina bread for anyone wanting gluten free sandwiches."

I stopped dead in my tracks. I firmly informed him that SEMOLINA is NOT gluten free and his jaw dropped. He said he was going to research that immediately after I left. (I somehow doubt he did but let's give him the benefit of the doubt.)

My daughter chose not to attend that college for other reasons, and was embarrassed that I'd stopped to talk to the chef, but hey, she's still my baby!

Schools are trying to get on board with this 'gluten-free mumbo-jumbo' but few really have a clear understanding of it. Absolutely be your child's advocate! If the school says they have gluten-free, nut-free, soy-free, etc. ask them for a tour and ask to be permitted to look at the ingredients of their product, even observe them preparing food for a gluten free meal during their busy period (just because they offer gluten free ingredients doesn't mean it is prepared gluten free!).

If they refuse, go to the campus department that deals with special needs (each campus has its own title for this). Request that they work with you on creating a 504 for her college years (yes, even your college student be on a 504, as can grandparents in a nursing facility), and make sure that she is placed in a dorm that allows her to have her own food supply away from other residents (my other daughter has a problem with rmates 'stealing' her food because it is sooo good--good yes, cheap NO!

Kudos to you for being willing to stand up WITH her! (I realize I only addressed the gluten issue, but your daughter has enough reactions to foods that she really does need to have her own meals purchased/made by her. It is far to risky in the college cafe' in which ingredients, personnel, and cleanliness habits change almost instantly.)

0

Share this post


Link to post
Share on other sites

Thanks for the replies. I did see that there is a proven link to celiac disease. One thing...being positive to wheat, barley and rye on the allergy testing at least solidifies the fact she needs to stay away from those.

I hadn't thought about a 504...I will have to look into that. I had a great talk with the college dietitian today. They are working diligently to come up with a database of what's in every food they offer in their cafeteria. So when a student comes in and has to stay away from certain things they can type that in and a list of safe foods will be provided. She said they have already listed over 3000 items ...so it's a work very much in progress...and hopes to be available soon. Next week she will meet with the dietitian and go over what she needs to steer clear of. I know the dietitian said that if it becomes apparent that she cannot safely eat at the college cafeteria they'll make arrangements for her to get off the meal plan and into an apartment.

Now I really have to think about this...you are not the first person to say she may not be safe no matter what eating in the cafeteria...and that we should push for her to make other arrangements right away.

0

Share this post


Link to post
Share on other sites

It may happen that she will have to get off the cafeteria meal plan and make her own meals. You have to consider cross contamination--are they washing their pans or boiling a fresh pot of water before making the gluten free food? If you boil your gluten free pasta in the same water you just boiled wheat pasta... that's no good. If your daughter stops eating at the cafeteria, I would recommend that you and your daughter spend some time in the kitchen getting some basic recipes down that are easy and can be made on the go or frozen in containers to whip out. Many wonderful people have posted recipes on this web site, and I found a few others on Adventures of a Gluten Free Mom blog. Just go to the search window up above and type in "buckwheat pancakes" or whatever you are looking for--people have posted their favorite recipes. You might be sending her a lot of care packages!! :)

0

Share this post


Link to post
Share on other sites




Thanks. Yep....I'm not sure she'll be safe eating in the cafeteria. She just won't have that many options. I hope the dietitian can work with her this week and come up with a plan. Otherwise...we'll have to push for some changes. I stopped at the grocery store with her before dropping her off. Anything gluten free either had soy or sunflower oil...I swear. We couldn't find any snacky type foods for her to have. We'll figure it out. It'll just be a bit difficult at first. I don't know how strict she needs to be either. The allergist wanted her to avoid wheat, soy and sunflower....and not worry so much about the others.

I'm in the process of creating a binder for her of recipes and a list of safe foods. That way when she's on her own it'll be a good resource.

I'm so sad for her. It just seems like such a difficult task ahead of herself :(

It may happen that she will have to get off the cafeteria meal plan and make her own meals. You have to consider cross contamination--are they washing their pans or boiling a fresh pot of water before making the gluten free food? If you boil your gluten free pasta in the same water you just boiled wheat pasta... that's no good. If your daughter stops eating at the cafeteria, I would recommend that you and your daughter spend some time in the kitchen getting some basic recipes down that are easy and can be made on the go or frozen in containers to whip out. Many wonderful people have posted recipes on this web site, and I found a few others on Adventures of a Gluten Free Mom blog. Just go to the search window up above and type in "buckwheat pancakes" or whatever you are looking for--people have posted their favorite recipes. You might be sending her a lot of care packages!! :)

0

Share this post


Link to post
Share on other sites

The dietitian sent me a message after reading up on EE that she doesn't think that my daughter will be safe eating in the cafeteria at the present time. :( I suspected it but it's hard. Only thing available as far as apartments on campus is a room available in a 3 or 4 bedroom apartment with upper classmen. Even that I would think would be difficult because she would have to use only her stuff in the kitchen and make sure nobody else does...and living in a kitchen that isn't allergy friendly would be hard. I might be looking at setting her up in an apartment off campus. Or she does what she can to survive the semester where she's at and then next year be put on the list for an apartment on campus.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,125
    • Total Posts
      919,501
  • Topics

  • Posts

    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,161
    • Most Online
      1,763

    Newest Member
    Jashan8534
    Joined