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Obstacles Faced By Celiacs
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29 posts in this topic

The primary reason for the higher price of gluten-free items is simple -- as with any other product, the more you can make and sell, the cheaper the price. Volume brings down the price ( I work in publications. 1,00 copies of an item might cost, say, $3,000, but 5,000 copies aren't $15,000, they're more like $4,500). Even the top selling celiac product in the world doesn't come close to selling as much as a mediocre or poor selling non-gluten-free product.

richard

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I think you have gotten a good idea of the obstecles.

I would like to reitterate that the bathroom think really is a problem. I am much better now. I don't have the emergency rush as I did before the gluten-free diet. But getting that thru to my head has been difficult at best. If not careful, I will find my self panicing for no reason. I never had a panic attack until this stuff hit and bathrooms were not always available. It is really a problem.

Eating out is also a great concern. I use to eat out all the time. Now when I do it is usually to the places I belive I can eat and not get sick. I try new places very seldom. Oh and if I know they have a nasty restroom, forget them - I may need it and no since in taking the risk.

thanks :D

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I've been at this for a long time, but the SOCIAL ISSUES are still a problem.

The isolation -- I often have to skip things (our first-of-each-semester potlucks at work, for example). Otherwise, I stand around with a diet beverage in my hand and people just have to know why I don't want to eat. (I've had too many bad experiences with cross-contamination, so I don't eat out anymore.)

And yes, I'd like to just go to a restaurant someday! ANY restaurant I want -- just walk in, sit down, and order! :rolleyes:

Another thing -- people (family and friends) tend to make far fewer invitations, since I'm such a "hassle" to prepare for (I also can't touch dairy, soy, and a few other common ingredients). More isolation. This has changed my life in so many ways. Yes, I always offer to bring my own meal -- I mean, I just like attending whatever the occasion is.

Finally, there are a few who do the raised eyebrows when you have to explain it for the first time and they haven't heard of it -- sort of disbelief, or maybe it's all in my head? Many people are just clueless about medical things, unless they have personal experience. Argh. I'd better quit ranting! :P

Patty

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Typical scenario;

I am out running errands with my family, it's getting too late to cook at home (everything takes longer to cook gluten-free since instant foods like hamburger helper aren't an option) so we'll find a place to eat. I look over the menu and find one or two things that <i>might</i> be gluten free. The waiter comes over and asks what we want. I mention that I'm allergic to wheat, rye and barley (it's easier than explaining what celiac disease is) and ask if the marsala sauce has any wheat flour in it. The waiter immediately response, "Oh, no- no wheat flour."

Now you might think this answer is adequate, but being more experienced with this sort of thing I ask again, "There is no flour in it? For thickening? How about in the seasoning mix?"

They respond sharply, "No, of course not!"

So I triple check, "So the chicken is not soaked in a marinade or seasoned with a seasoning with flour in it, there is no chance that any of the sides have wheat flour or barley or rye products in them?"

"No, I'm sure it's fine but if you are really worried I'll check with the kitchen staff"

They check with the kitchen staff and the answer is that it's fine. No wheat, no rye, no barley.

Okay, so I order the chicken marsala. Twenty minutes later they bring out the meal, and of course there is a big slice of bread on the plate that wasn't mentioned on the menu. I ask for them to make it again since I am "allergic" to wheat. They respond that it is WHITE bread, not WHEAT bread. Then I have to explain that white flour is made from wheat. You'd think that they'd know this, but I'd say at least 40% of the people in food service don't seem to make that connection.

So another 20 minutes later my family is almost finished eating and I am just getting my meal. I take a bite and find that the chicken has a bit of a crust. It's made with bread crumbs.

Now I can't eat it, it's been made over for me at least once already, and the kitchen didn't think it would be a problem because the chicken isn't coated with flour, it's coated with bread crumbs.

So I end up getting sick from the bite I took, I don't get to eat anyway because it's too late and too risky to try and have them make it again (who knows what else they'll mess up on) and so I just go hungry for the night.

I've had waiters tell me that their pasta is safe since it has no flour in it, it only has semolina.

I've had arguments with kitchen staff over whether soy sauce has wheat in it.

The people cooking the sweet potatoes don't even know that struesel is made from flour and oats. How is that even possible?

And how do you ask the waiter of a Mexican restaurant whether the enchilada sauce is thickened with flour when they barely speak 50 words of English? I am planning on taking up Spanish just so I can eat at Mexican restaurants again.

When I go to other people's homes for dinner, I bring my own- I don't even tell them about my restrictions because there is no way I can expect them to cook for me. I can barely manage to make a safe meal for myself after studying it for a year, how can I expect them to do it on a day's notice? My own mother still hasn't figured out that I can't necessarily have any brand of barbecue sauce you pick off the shelf... "But honey, I didn't even touch the flour canister when I cooked it!" :rolleyes:

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    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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