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

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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.

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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.)

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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.

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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!! :)

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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!! :)

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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.

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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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