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Frustrated


ShayBraMom

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ShayBraMom Apprentice

for the last two adn a half weeks I've been trying to get the Bloodwork for Celiac-Panel with Prometheus done for both my kids! It was a back and forth with calling and so on! first the Lab said it shouldn't make a difference whith whom the Panel is done, I disagreed and insisted that they contact the Gastroenterologist since they had different Panels for the Celiac to offer, by the end of the week they still didn't have their answer because they where to slow. then last week I was in the hospital with my little one for Seizuretesting 4 days, on Friday we come home I get finally a call- yes we aranged ti so we can do the Test for Prometheus, the Gastro let us know what he needs, BUT we have to order the testkits first! Well, comes tuesday this week araound, they call in the afternoon and leave a messeage on the Aswermachine whic I saw Tuesday eve "The Test-Kits are in, make sure you come in no later then Friday! Ok, yesterday we hada n allday appt. for my son in tucson (which is almost 2 hours from here) for a Neuro-Psych-Evaluation (due to a Braininjury my son received) which took form 8 in the morning til 4 p.m., we didn't even get home until the evening, means we couldn't gho either. so I went first thing this morjning, only to find out that they got Training every Thursday (Military-Lab) and won't be in until 1p.m.- ok, I drive off Base again, come back int he afternoon, onluy to be told that I should hav e come in before 1.pm. :blink: AND that hey can't do it tomorrow because it would arrive at Prometheus until Saturday and they can take it because nobody is there on Saturdays- so they sent me back home and said "Come back Monday" :ph34r: .....

One question, since they say the bloodtest is m ore accurate when you are on wheat, or let me rephrase that- you have to be on wheat to have the bloodtest done and to be more accurately, is it going to make a big difference if you take my DD of wheat today and not put her through further misery through the weekend? I got superdelicious Pretzels from Glutino today ( I was amazed, they are REALLY good and taste not really different from regular snackpretzels)- they are actually Gluten,Wheat, Casein, milk and Egg free! Last evening she actually had gotten some crust off of a white toast (she's only 10 month old) and oh boy did we have to pay! she was ok for the first two hours after eating it, she wernt to bed at 8 and at about 9 or so she started waking up crying and passing gas closer and closer. By ten she was literally waking every two-3 minutes, bending her back, kicking, screaming, crying while dozing off in between again- this went on until 1.30 in the morning! I was awake holding her on my chest trying to calm her, massaging her tummy. I do not want to put her through more then this but I do need her dignosed too to rule out or in that she has that wheat issue! Should we still be ok if she does not get any more gluten amd then has her test on monday or could that already affect the accuracy of the test?

sure I can keep her glutenfree just on the suspicion but at school later for example or day care, the chance that they still will give her here and there something with wheat is big if it is only based on my suspicion, if I do have proof they will make sure that she doesn not ever get any wheat! that's why it is important for me to have papers on all of it!


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    • Scott Adams
      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
    • Tammy Pedler
      As soon as I see gluten free I read the labels. I always find stuff that I cannot have on the products them selfs. Like spices, when the labels says  everything listed and then after like say garlic salt then the next thing is spices. When it says that that can contain wheat and other things I can’t have.. 
    • Scott Adams
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    • trents
      Paracetamol, aka, acetaminophen (Tylenol) just does not do anything for me as far as pain relief. It does help with fevers, though.
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