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peetred

I'm Discouraged... Need Some Advice

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We have been as gluten free as possible now for a few weeks. That being said DH and I have made mistakes and it also seems that no matter where we go someone tries to give my 2 year old food. It doesn't help that DS tries to sneak food when I tell him he can't have any, even if I have his own food. He wants what everyone else is eating and he doesn't understand. I feel that we aren't going to see as clear of results as we need to see if we can't have him totally gluten free, but I feel alienated from situations b/c I have to be so picky about my son's food...

The worst part is I can't say for sure if he has Celiacs or not. Blood tests are negative... DH and I are seriously thinking of ordering tests from that laboratory online just so we know for sure. I feel dumb when I don't know for sure.. otherwise I'd probably have allergy information for him to wear or something and I could be pushy to people about his food b/c it's a true disease. Right now I just feel stuck in the middle and not able to say for sure.

Also, does anyone have extra advice for a 2 year old with Celiacs out in public settings. I feel like I have to have eyes on him at all times so someone doesn't give him something he can't have. People just don't ask the parents, you know?

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We have been as gluten free as possible now for a few weeks. That being said DH and I have made mistakes and it also seems that no matter where we go someone tries to give my 2 year old food. It doesn't help that DS tries to sneak food when I tell him he can't have any, even if I have his own food. He wants what everyone else is eating and he doesn't understand. I feel that we aren't going to see as clear of results as we need to see if we can't have him totally gluten free, but I feel alienated from situations b/c I have to be so picky about my son's food...

The worst part is I can't say for sure if he has Celiacs or not. Blood tests are negative... DH and I are seriously thinking of ordering tests from that laboratory online just so we know for sure. I feel dumb when I don't know for sure.. otherwise I'd probably have allergy information for him to wear or something and I could be pushy to people about his food b/c it's a true disease. Right now I just feel stuck in the middle and not able to say for sure.

Also, does anyone have extra advice for a 2 year old with Celiacs out in public settings. I feel like I have to have eyes on him at all times so someone doesn't give him something he can't have. People just don't ask the parents, you know?

I don't have solutions for you about people offering him food etc. but I would say that if it would help you feel better or stronger, then by all means have the Enterolab testing done. I was skeptical about it (only because the work has not been scholarly reviewed/peer reviewed) but we did it for my son because he didn't want to try the diet without proof that he needed it. So, you are having the same doubts and Enterolab does give good info, especially when you have the gene test done too.

Best of luck.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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I have seen some really neat kids' t-shirts on the Web that say things like:

"Don't feed me! I have allergies."

or specific ones, like:

"I'm allergic to dairy!"

etc...

Here's a link to some gluten-free shirts and pins: http://shop.cafepress.com/gluten-free

If you're crafty, you could make your own with a plain t-shirt, stencils, and fabric paint.


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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Unfortunately I think we do have to be pushy and make everybody aware and keep our eyes on them in publlic places. I found it really hard around the holidays because our family didn't get it yet and kept trying to give her stuff and plus she was reaching for things. dd is four so she understands now and is very good about telling people about her many allergies when food is offered.

My husband and I both eat gluten-free when we are home so she doesn't feel different and there is nothing else to want. It's just easier for us and I think it has made it easier for her to accept. To keep the cost down we eat mostly meat, veggies and a grain in some sort of dish instead of buying specialty prepackaged food that is more expensive. At first is seemed like a lot more work but it's not a big deal now. I also discovered that I am gluten intolerant through this process. I would never have guessed that it affected me as well.

Good Luck to you!

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I have seen some really neat kids' t-shirts on the Web that say things like:

"Don't feed me! I have allergies."

or specific ones, like:

"I'm allergic to dairy!"

etc...

Here's a link to some gluten-free shirts and pins: http://shop.cafepress.com/gluten-free

If you're crafty, you could make your own with a plain t-shirt, stencils, and fabric paint.

I was going to suggest the T-shirts, too. The also have stickers that say the same thing.

As far as telling other people without having a diagnosis . . . I would just say that you suspect a problem with gluten and you are in the midst of a food trial and to not give him anything to eat (that doesn't come from you) or it will invalidate the test. (Makes it sound kinda official, huh?? :lol: ) Say it with confidence and let them know that they will cause a setback in your trial and possibly making your child ill!! . . . you may not have a diagnosis at this time, but I would tell them that the trial diet is part of the diagnostic process. Lots of intolerances can't be medically tested for. . . and for those, it's trial and error.


Janet

Experience is what you get when you didn't get what you wanted.

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