Newly Diagnosed - Need Help!

[Sab142005]

Hi all,

I am a recently diagnosed celiac and still very much in the process of coming to terms with the disease. I started losing weight after the birth my son and pretty much had most of the classic symptoms of the disease. Grateful that it got diagnosed but the world seems like a much more difficult place now! Im very glad to have found this message board and to know that there are others out there in the same boat. Also want to thank everyone for taking out the time to share their experiences and advice. I have some basic questions and it would be great if anyone can share their two cents.

1. My son is 10 months old. I hope and pray that he never has to deal with this. How and when should he be tested. Is it just a blood test or would a biopsy be required (L). I read someplace that there is a DNA test that can be preformed to find out for sure if he will ever be at risk. Is this test very expensive / common?

2. Second, there seem to be soo many lists going around. Which is more accurate and up to date. How often do I need to call companies to check and see if there are any changes. What works for you all?

3. What is this controversy on distilled vinegar. Or more importantly, what is the verdict?

4. Can anyone recommend a really decent bread (closest to the real thing), a good cereal (closed to Kelloggs frosties) and a good chilly sauce (like those Chinese brands?)

5. Is the LaChoy soy sauce gluten-free?

6. Does anyone know any good gluten-free restaurants in the Chicago / Milwaukee area?

7. Is there anything one can order safely at a regular restaurant without the risk of being glutenized?

Thanks soo much for your help. And good luck everyone! This has got to be the most complicated diet ever. But on the flip side, I would rather be doing this than undergoing any painful surgery and taking any strong drugs. There are always those worse off than us.

Sab.

[tarnalberry]

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1. My son is 10 months old. I hope and pray that he never has to deal with this. How and when should he be tested. Is it just a blood test or would a biopsy be required (L). I read someplace that there is a DNA test that can be preformed to find out for sure if he will ever be at risk. Is this test very expensive / common?

He should be tested as soon as he shows signs, when he turns 3 (in my opinion, because this is when tests tend to start being more accurate in kids), and every few years (maybe every 5?) while he is NOT symptomatic (also, my opinion). This country does not have guidelines for these sorts of situations, aside from "test if you see symptoms", which is insufficient, given that a large number of cases do not manifest with GI symptoms.

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2. Second, there seem to be soo many lists going around. Which is more accurate and up to date. How often do I need to call companies to check and see if there are any changes. What works for you all?

I use the celiac.com safe/unsafe ingredient list, the list that KatieUSA puts on here of companies that will clearly label gluten containing ingredients, and ALWAYS read the ingredient list. *NEVER* just grab something off the shelf without checking the ingredient list unless you know it is a product being specifically marketed as gluten-free. Ingredients don't change often, but they change without warning, so there is no substitute for always reading labels. It takes a little while to get savy at remembering what ingredients are safe/questionable/unsafe. For those with questionable ingredients which I've called on and been told are safe, I'd say that a follow-up phone call once a year sounds reasonable, but not for any particularly pressing reason other than convenience.

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3. What is this controversy on distilled vinegar. Or more importantly, what is the verdict?

Controversial bits in what's safe/unsafe are best understood as to why they exist, so you can make a more informed decision for yourself. Of course, at the end of the day, it all depends on what HIS body is good with. Some people don't deal well with vinegar regardless of their celiac status. The controversy, however, is that vinegar can be made with wheat, but the distillation process is a physical chemistry process that doesn't allow molecules in the wheat which are as heavy as a protein molecult to pass through to the end process. Some people don't believe that last statement, some do. (Based on my chemistry background (my electives for my degree were mostly phyiscal chemistry), I believe that vinegar is safe.) The EXCEPTION TO THIS RULE is malt vinegar, where malt is added back in AFTER distillation. Any other vinegar that has items added AFTER distillation is a risk.

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4. Can anyone recommend a really decent bread (closest to the real thing), a good cereal (closed to Kelloggs frosties) and a good chilly sauce (like those Chinese brands?)

Bread - I'm not a huge fan of any of them. The Kinnikinnik stuff isn't bad, but I just opt to make things other than sandwhiches, or use corn tortillas. It's something I've adapted around, not substituted. gluten-free breads are notoriously expensive, and who prefers what varies widely.

Cereal - Nature's Path, Health Valley and EnviroKids both make a frosted flake type gluten-free cereal, as well as a number of other types.

Chili sauce - Thai Kitchen makes a good gluten-free chili paste, and if you read the ingredients on most chili sauces, they should be safe based on what's listed. I think there are a couple people on the board who can recommend a specific brand.

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5. Is the LaChoy soy sauce gluten-free?

Yeah, one variety of it is (gotta read the ingredients), but it sucks. :-) San-J makes a wheat-free tamari (gotta read the labels, they also make one with wheat) that is of significantly higher quality. You can also use Bragg's Amino Acids, which is slightly different in taste, and still better than La Choy.

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6. Does anyone know any good gluten-free restaurants in the Chicago / Milwaukee area?

I was there once for a business trip, so will chime in: Whole Foods has lots of gluten-free grocery stuff, and I believe there's PF Changs and Outback there. I also think there's a thread in the restaurant section of the message board that discusses gluten-free options in the cities. And finally, if you google "gluten free restaurant chicago", you'll find some pages to check through that should be helpful. (Works for most major cities.)

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7. Is there anything one can order safely at a regular restaurant without the risk of being glutenized?

Without the risk? No. Because they use the kitchen for things with gluten, there is no way to *eliminate* the risk. You can lower the risk to levels many of us consider acceptable by ordering things plain, having meat cooked separately, ordering steamed veggies or a baked potato, and being upfront with your waiter/waitress in telling them your restrictions (talking with the manager if you aren't confident they'll do everything that needs to be done).