• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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:
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
Ads by Google:


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
      106,751
    • Total Posts
      932,196
  • Member Statistics

    • Total Members
      64,213
    • Most Online
      3,093

    Newest Member
    rrwalter25
    Joined
  • Popular Now

  • Topics

  • Posts

    • I've had them about six or seven times at several different Starbucks locations.  My sister has, also.  Neither one of us have had any signs of getting glutened. They are served in a parchment paper bag that should be handed to you straight from the oven sealed.  I've heard many internet complaints about the bags being dusty, too many ingredients, unhealthy, etc., but honestly, they are pretty darned tasty! And, when you are traveling and hungry, they are even tastier.  They sell out quickly at most Starbucks, but I've been able to purchase one as late at 6 p.m.  
    • I wish they didn't use " gluten" as a headline.  People abuse and starve children for a variety of " reasons".  gluten-free was just one they picked, it could have been paleo or kosher or whatever... 
    • Ugh!  This again..... first ...it was one person...not a study... just someone's speculation. if I am remembering correctly - no one actually tested the retainer. The kid was a 12-16 yr old an drew could have gotten caught eating gluten, etc, etc, etc.   And then those internet folks who love to spread " bad news" or  use that stuff to further their purpose, jumped on it.  And then let's talk to a chemist or plastic scientist - if the plastic leaches our actual proteins, like gluten, wouldn't the plastic piece break down after a while? welcome to the world of Celiac internet myths.   adding - none of the Celiac Centers, Associations, etc have warned people not to use a retainers.
    • Ok, so, here goes. Today I had my teeth cleaned, and this was my first time there since I've been diagnosed. I double checked that their tooth polish is gluten free, and they told me it's safe. I feel fine. Tonight I was at Walmart looking at buying some mouth wash (I was scolded, as per usual), and I Googled gluten free mouth wash. I stumbled upon an article about gluten free products and dental stuff. The person mentioned a study that was released stating that a child's retainer was making her sick because it contained gluten - in the plastic. I had braces when I was a teenager and had them out about 12 years ago. I got one of those old school retainers. The kind with the plastic part for the roof of your mouth and the metal wire that goes around the front. It's cuuuuute. Let me tell you. Anyway, I decided to delve into this more, because I don't know if my retainer is safe now. I found an old thread on here where it looks like people were debating this, and for the most part, seasoned Celiac's agree that it's a bunch of bunk.  Do people have opinions? I know that many of you do a great deal of research into Celiac and that you may have some information. I'm looking for real science - not fear tactics. I wear my retainer religiously, My mom paid almost $5,000 for my teeth to look like they do, and I'm not about to let them get shnaggled again. I'm 29, but they still move if I don't wear my retainer. I've been debating getting a new one - one of the plastic ones that you can't really see, but I don't want to shell out the dough for that until I have to. I'm shocked mine has held up as long as it has.  When I was diagnosed back in November my TTG was >100. Two months later it was 12. So I assume that my little retainer isn't causing much damage, as that's pretty significant. I have to go back in July to have my blood tested again. In the meantime, is this something to stew over? I have no idea where my retainer was made, or who made it. It was a long time ago and I bet if I called my orthodontist to find out who the manufacturer was they wouldn't be able to tell me. Maybe I'm wrong. It was 2004 or 2005, so I'm assuming they won't know at this point. But I could check if people think I should. I feel fine, for the most part. But I was a silent Celiac when I was diagnosed so I don't trust my body to not tell me if I'm being glutened. I'll just say that.  Thanks!
    • They are awesome! But they are not available at Starbucks at some places--like hospitals. Pity!
  • Upcoming Events