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It's Celiac!
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Exsplaining celiac to others is like talking to a wall.If doctors don't get it ,why would the general public.Wheat is only one of the things we are allergic to.It comes in so many forms.''Wheat allergy''makes it all seem tame.No one can grow out fo Celiac.its there for life.Look at foodallergybuddy.com for example.Thay have down lodeable food allergy cards.Whats there to ceck off under the wheat calum.Every thing but barley,rye,oats,ext.

There has got to be a way to shake up everyones way of thinking.Tv,radio comercels,newspaper ads,something.T-shirts are ok,bumper stickers yah,but do you pay any attention when your busy doing other things.Coeliac uk is five years ahead of us here in the US.YOU CAN'T BREATH WHEAT IN TO YOU BODY,BE AROUND A WHEAT MILL,OR USE IT.All will couse a reatsion.

It hi time people get the message that this is CELIAC not ''wheat allergy''.

:angry:

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While I get your point, some people still aren't up to speed on allergy. And some people treat allergy with more respect than intolerance. (Celiacs, even a bad case, is not at all likely to have you dead 30 minutes after a small exposure. Anaphylactic allergies are. So, people assume if it won't kill you right away, it's not awful if you get a bit.) Definitely more education is needed, and for those of us willing to answer the questions and take the odd looks, starting by saying "I'm gluten intolerant; eating wheat, barley, rye, or oats will make me very sick." is a good start.

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Although you all may not agree wth my way of getting the seriousness across I like it: I let my food servers, cooks, etc know that I have Celiac Disease and that it is a SEVERE intollerance to wheat, gluten, barley, and oats, and that even cross contamination can harm me. Then I ask them if they know what Celiac Disease is and if they understand it, if they do I leave it at that. However, if they don't I simply let them know that even the smallest amount of the ingredients I listed can kill me or make me violently ill very quickly, and that I would prefer my meals w/o garnish and everything served seperately and to please cross reference any "iffy" ingredients with my Celiac card. As far as the general public goes, all my friends, family and doctors are knowledgeable about it, and I'm always informing people about it when I can find a discussion starter.

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Doctors are not up to speed on CDd or DH.Its a food allergy to them.Meds have ''W''.Liqued & or pill.Its up to us to get the phormest to look it up if thay ever have the time.

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Hi! I'm PastorDave's wife. I love the way he tells people about his wheat "intolerence." He says, "well, it won't kill me at once, it will just kill me very slowly and painfully!" They get the idea!!!

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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