<p>Consolation, I don’t know if it is Celiac disease that our friend has, but I also know a lady whose allergy is so severe that she becomes sick from using knives that have cut a piece of bread. I also know others with Celiac and their allergies are not as severe as hers.</p>
<p>There is a difference between gluten sensitivity and celiac disease. The uncharitable view is that the latter is a disease diagnosable by scientific means, and the former is a set of vague symptoms that may or may not actually be avoided by not consuming gluten. My personal view is that there are a lot of quacks and gullible people in the allergy world, but that some people really are deathly allergic to certain foods, and some people really are sensitive to certain foods.</p>
<p>I also have heard of people being very sensitive to even a crumb of gluten… but the level required to actually do damage to the intestine may be as Consolation has cited. Conversely, some people have no physical symptoms but the damage still occurs.</p>
<p>I have read that they are close to developing some sort of supplement that would replace the enzyme that is missing which breaks down the gluten in “non-celiac” individuals. How wonderful would that be!</p>
<p>Another point to keep in mind is that this disease is genetic. But this disease has gone misdiagnosed for many years that people may not even know that it runs in their family. Before they knew how widespread this disease is (perhaps 1 in 250 have the disease) many were given incorrect diagnoses.</p>
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Would you mind PM’ing me with the name of that website? This is the kind of information my husband keeps asking me, which I have been unable to find.</p>
<p>Oregonianmom, not sure if you are interested in support group forums, but this is by far the best. Helped me with medical issues, recipes, gf food listings…just to name a few. I couldn’t have made it the first year without this.</p>
<p><a href=“http://forums.delphiforums.com/celiac[/url]”>http://forums.delphiforums.com/celiac</a></p>
<p>^Thank you so much! :)</p>
<p>"There is a difference between gluten sensitivity and celiac disease. "</p>
<p>This cannot be stressed enough. Celiac disease is an intolerance to gluten, not just an “allergy” or “reaction”. In Celiacs gluten damages the villi of the small intestine to the point where nutrients cannot be absorbed. Malabsorption of vital nutrients such as iron, magnesium, etc. occurs.</p>
<p>Left untreated it can lead to intestinal cancer.</p>
<p>Not an allergy or sensitivity.</p>
<p>I was diagnosed a few months ago after a year of H***. It’s unbelieveable
how it is the last diagnosis even GI’s look at. Travelling across the country
with my twins on college trips with all my symptoms-- well, you can imagine.
Anyway- even though I miss all the carb goodies, at least it’s not a life threatening disease! The “silver lining” is that I’ve lost weight without the carbs. Oregonianmom-or others- if you want to PM me, go ahead. The next
year will be a process of further accepting the diagnosis, changing 51 year old habits, and learning more about where “hidden” glutens reside.</p>
<p>I am hoping a side benefit is losing 10-15 pounds. I met with a dietician this week, and she thought I would easily drop any excess weight. Let’s hope so! I cleaned out my kitchen earlier this week and have been eating gluten free for the past few days. I feel paranoid about everything, worrying about hidden gluten, especially when I am eating away from home. </p>
<p>Good to see you, cornmuffin! Have you had your boys tested? My D tested negative (antibodies) but my S refuses to be tested. I’ll leave that up to him.</p>
<p>oregonianmom - I was at Trader Joe’s today and just happened to notice that they also have quite a selection of gluten-free products (we have a friend who has celiac’s, so I notice things like this). I don’t know if there’s one around you, but if there is, it would be one more possibility.</p>
<p>teri, yes I love Trader Joe’s!!! They also have a list on their website that I printed out. So glad we have a couple of TJ’s close-by.</p>
<p>My stepson’s biological mother has it. Very healthy as long as no gluten sneaks in. If you live near Portland there are some great places that serve gluten free including Andina.</p>
<p>I think there is a learning curve at first so a support group is great. My husband (her ex) always thought there should be a website where anything you order is guaranteed safe, fresh and good. Perhaps there is by now. Good luck.</p>
<p>If you follow the Paleolithic diet or what I call the cave man diet, you don’t eat any grains at all. At a lecture I attended, the author of Deadly Harvest, Geoff Bond, calls grains for the birds literally. It isn’t that hard to cut back on all grains and bulk up on fruits, veggies, fish, meat. Actually, it is a healthier way to eat.</p>
<p>Oregonianmom- 2 1/2 weeks more…can you believe it…then one car trip to Syracuse, and back, and turnaround, and a drive to Oberlin and back. We are going to “chill” in Cleveland after the dropoff 'cos we have lots of friends there. Good luck in your son’s “launching”. About your question of getting the boys tested- no- but if they have symptoms, I would encourage them.<br>
By the way- my blood marker was “mildly positive” and the “gold test” (biopsy)
was negative, but the GF diet produces such dramatic results that I have to use the celiac label. (I had a year of other tests!) Even a little gluten sets me off. Just thought I’d mention that in case it helps others.</p>
<p>cornmuffin: noticed the LI location…FYI, not sure where you are, but there is a great pizza/Italian GF restaurant in Wantagh called Cafe Baldo on Jerusalem Avenue…It’s borderline North Bellmore…they have a full GF menu; pizza is great!!!</p>
<p>also, since I noticed you are heading to Syracuse, are you heading to SU? We are: I am contacting the SU food services peeps this week to find out if there will be GF food available for families since they are providing breakfast and lunch in the dining halls during orientation…I’ll let you know…</p>