crc0622

How will you be able to convince your patients to do things that are in the best interest of their health when you aren't willing to do so yourself? (Conjurs up pictures of big fat doc who chain smokes telling pt to lose weight and stop smoking. )

I don't mean to be critical to you in any way. I was always the type of person who thought anyone with any food restrictions (vegeterian, etc.) was just being picky and silly. And yet yesterday I was served a salad with a big pile of fried onions on top (after requesting it without). I was with a group of co-workers and the last thing I wanted to do was make waves, but I sent it back. Came out the second time with crumbs where they had just scraped off the onions. I found the waitress, explained the problem nicely and got a new salad. No one cared but me. We make a lot bigger issue of it than most people, and the ones who can't understand are jerks.

This is important to your long-term well-being. You are here on this forum asking the questions because you have doubts yourself. You know the right thing to do. You may hope someone will say "yeah, go ahead and eat what you want." But I don't think you'll find that here!

Celeste

Janine,

Do you have any problems with the green tea? I was still having the big D every weekday morning so this week I cut out my usual green tea (lipton w/caff) with honey and the hand full of almonds. No D for two days. I have no problem with dairy and still eat string cheese every morning with no problem.

I'm gonna give it this week and try adding back one thing at a time and see what it is. I just have a feeling it's the tea or honey. Hmmmm . . .

Oh, yeah, I drink coffee just fine, too. A couple of cups every day.

Celeste

Oh, yeah, Charlotte - never tell them!! There are quite a few of the gluten-free mixes that are great. I requested that the commissary get some gluten-free stuff (I'm a Navy wife) and they had them in about 3 weeks - 6 different kinds. They are actually pretty good and I'll bet your family would never know!

If you ask at your grocery store, I'll bet they'll get you some mixes and things (and in far less time than it took on base!). There are quite a few brand names - Gluten-Free Pantry, 'Cause You're Special, Pamela's - - there are others. I have seen the Bob's Red Mill gluten-free Flour Blend and pancake mix in the SuperTarget. (Make sure they are gluten-free, thought, because Bob's makes non-gluten-free stuff, too.)

Start looking around and you'll be surprised what you can find. My local grocery store (Publix) also has several gluten-free cereals. Look in the organic or specialty foods section. Also, in the Asian foods section you can find rice flour, rice crackers (wasabi flavor is yummy) and the Thai Kitchen noodle packets you add boiling water to. This is just an idea of some stuff you can get in mainstream stores. It is a pain to have to drive all over town.

I have mail-ordered from Gluten Free Trading Company and there are places you can get bakery breads, cookies, etc. too. Read as many posts as you have time for! I spent hours on three forums for a couple of weeks after diagnosis and I already feel like an old hand, just 7 weeks after dx! You can do it!

Celeste

Charlotte,

You have got to take the time to take care of yourself! Who is going to cook for your family if you are gone in three years?? Take the time to do it now while you still can. You are too young to be so miserable! My first recommendation is to check out this website: Open Original Shared Link

It is another forum similar to this one but one of the moderators is a chef/owns her own restaurant and posts lots and lots of recipes every day. You can go back through the archives and look at them. Most are not hard to do at all and it may give you some ideas for food you haven't thought of. Scroll down the home page and you'll see links for product lists (the best list I've seen), recipes, lots of useful information. This is a great site for support, but not much on recipes!

We cook for friends all the time and stay mostly with grilling meat, fresh veggies, potato salad, etc. There are so many good things to eat that don't come from a box! The processed foods will kill you even if they don't have gluten! If you can plan ahead and make more than one meal at a time, it really is easy. Cook a lot of meat one day and use leftovers for salads or casseroles another day. Make twice as much veggies, etc. Cook on weekends for the week.

If you can give me some ideas of what you used to make that you're having trouble with, maybe I can help you to convert it. Don't give up. It will get easier!

Celeste

Jacksonville,FL

OH NO - don't call Miracle Whip mayonnaise!!

just kidding . . .

There is a huge confirmed products list on delphi forums:

Open Original Shared Link

Just scroll down to the confirmed products list and there are sections on just about everything you would want! You can download this and save as a word file (I think you have to unzip).

Hope this helps. I find the delphi forum to be very informational.

Celeste, Jacksonville, FL

I use the Tinkyada spaghetti noodles w/no oil and have not had a problem with sticking. I do put salt in the water and stir well after adding the noodles to make sure they don't stick at first, then let them boil away for 16 minutes. I don't even rinse them - just added pesto.

Celeste

Jax FL

I am no expert on diet and nutrition by any means, but my instincts and everything I have ever learned tells me that eating carbs all day and getting no exercise is just diabetes waiting to happen!

I probably have not had as much physical pain as many of you, but I did feel too crummy to exercise before going gluten-free due to not keeping any food in me. Once I went gluten-free and that problem got better, I started exercising again right away - nothing excessive, just 30 minutes 3 or 4 times a week. It is amazing how much better I feel. I think that this also stimulates the appetite but I would eat as much protein as you can digest without having problems. I eat cheese in the morning, tuna on salad or whatever was leftover from the night before (protein) at lunch and meat and veggies at night - sometimes with a boiled egg thrown in for good measure. I also eat fruit all day long (with peel). It's in season now and yummy. Peaches, grapes, plums, banana. All the processed, simple carbohydrates are not good for anyone, regardless of the state of their body. But putting that into an already-sick system is not good. And that's not the kind of weight you want to gain (fluffy, not firm!).

I am not saying never have a treat, because I do that too! Just not all day long!

Take care of that body - do what you can, when you can and put good stuff into it. It's the only one you're ever going to have and hopefully it will last a long time!

Celeste

I chew Dentyne Ice all the time. I would be very surprised if there is gluten in gum. Nothing I have read would indicate this. Perhaps they are having problems with the artificial sweetener if it's a sugar-free gum. This would be much more common. I believe that aspartame (nutra-sweet) is poison.

And I will add two more Celiac related forums that have been invaluable to me in the month or so since I was diagnosed:

Open Original Shared Link

Open Original Shared Link

I want to strongly suggest that you not start by buying a bunch if gluten-free substitute breads, cookies, etc. (junk food, basically) and stick with eating whole foods as much as you can: meat you prepare yourself (most pure spices are okay but watch out for spice blends), veggies, fruit. Simple at first, then you can start adding in other stuff. (The substitutes are all quite expensive, also, so that alone should discourage you to some degree!)

Read as much as you can. Not all of it will be applicable to you, but use your judgement to cull what you can use. The sites above both have great food lists and other info that, in my opinion, is much better than this site.

Post when you have questions. The forums are great!

Celeste

Jacksonville, FL

Best cocktail sauce there is: homemade.

ketchup (Heinz is gluten-free)

worchestershire sauce (Lea & Perrins)

lemon juice

horseradish - as much as you can stand!

Adjust quantities to taste. yummy.

Celeste

BamBam:

Annie's has small packets you can carry in your purse - you can get them at the Gluten Free Trading Company - web site is www.foodforceliacs.com.

A lot of Kraft dressings are gluten-free. Kraft is a company which will always list any gluten source clearly on the label, so you don't have to wonder. If you don't see wheat, barley, rye, oats, then it's okay. Wish more were like that.

Celeste

It is so refreshing to actually hear people say they'd just stick with the diet. We live in such a "take a pill and it'll be okay" kind of time that I expected more people would go with that option. I have to agree. I don't think a medication could be developed which could guarantee that I wouldn't have other problems in the long run. Same kind of reasoning I use in my decision to avoid artificial sweeteners-all of them.

Linda-Do you mind my asking what meds you take? Just curious, as I didn't know anything really helped except gluten-free.

Celeste

I chew the Dentyne cool mint gum - there are several flavors. I'm pretty sure all Dentyne gums are gluten-free.

I'll second that, richard. Sometimes you just can't help it, but limit eating out as much as you have the power to.

At first I didn't want to restrict myself any more than I absolutely had to

I feel the same way. I am only gluten-free for a month and I still drink a cup of decaf coffee almost every day, a Coke every now and then (maybe 2 per week) and any food I want as long as it's gluten-free - although we do eat healthy at home, mostly whole food, not much manufactured stuff. I eat a LOT of fruit since it's all in season right now and yummy!

Anyway, I hope I am not causing myself an extended delay of my healing because of this. Fortunately, I did not get a lot of bad pain with my symptoms - never did - just the normal frequent diarrhea, constant bloating (which was the most painful thing). And it is drastically better in the last month - almost normal again.

So, do you "experts" think I'm hurting myself?

Celeste

This is just a theory, but perhaps the lactose free variety is not gluten-free? I had read somewhere to be very careful of the sugar-free, low-fat or otherwise different varieties of safe foods because their formulations are completely different. I know that the regular Breyer's full-fat stuff is gluten-free because I have eaten them (and the label is VERY simple on those - no big words!) but not so sure about the "altered" ones.

Celeste

The Yahoo forum for Celiac Disease, Open Original Shared Link , has over 100 restaurants listed and is also a good source of other information. You can log in as a member - it's very easy - and go to the files for an abundance of information.

Also, the Delphi Forum, Open Original Shared Link has some great information as well.

These are the three sites I use for information - - each has a very different flavor, different interests, etc. Try them out.

Celeste

I've been on ortho-novum 777 forever and it's one that is typically given out at clinics (I first got mine at a health dept 18 years ago). I have never had any problems with it, but have not checked it specifically with the manufacturer.

I will send an e-mail to Sam's today making the same request - power in numbers, folks. Just saw it in action with the allergy law just signed!

You can't absorb the gluten through your skin, so even if the adhesive had gluten, it would be okay - unless you are licking it, of course!

And I have seen quite a bit recently about envelopes not containing gluten anymore, but I'm not licking them if I can remember not to. Have a bit of a brain cramp on that one every now and again!

I have been on OrthoNovum 777 for 18 years - way way way before I knew anything about this celiac disease thing. But I think I am a lucky one that is not very sensitive to the hormones in there. There are a lot of people who just can't tolerate them, regardless of whether they have other health issues or not. You may be one of them.

I have an appointment with my GYN in a month or so and am going to ask about changing, too. That ring thing sounds interesting. I think 18 years of these drugs running through my body can't be a good thing (and I don't have to remember that little pill every morning).

Celeste

This link is to the best list I have found. I still contact most manufacturers directly by e-mail if I'm not absolutely sure. Most are great to respond right away. I understand that the CSA list is somewhat outdated. I started off using it, but this one seems to be more user-friendly:

Open Original Shared Link

If this link doesn't work for some reason, you can go here:

Open Original Shared Link

and scroll down to the gluten-free Products List link.

Hope this helps.

Cool - thanks, guys. I expected the gluten gestappo to yell at me for being so careless!

I appreciate all the information I receive on this site so much - I can't imagine how people coped in the "old days" before this was available! I feel much better informed than even my doc probably is (haven't seen him since diagnosis). I see a dietician tomorrow for the first time - I am sure that will be an adventure, based on some things I have read! Thanks again!

I had specifically e-mailed them about their Cajun seasoning and they told me it was gluten-free, and sent me a gluten-free list. I wrote back and asked them why the Cajun seasoning wasn't on the gluten-free list. This was their response. They were very prompt in their responses. So, just because a blend is not on this list does not mean that it's not gluten-free. Check with them.

Our Gluten Free List is a basic list. Many of our blends are gluten free but are not on the list because we prefer to check them on a case by case basis. Mostly what is on our list is just the single spices. We do not want to have dated lists in circulation in case any of our blends would change in their gluten status. All of our Cajun Seasonings are gluten free.

Valerie

Consumer Affairs

Spices are inherently gluten free. The ones listed below are safe for those who avoid gluten in their diet, because they contain only spices.

Gluten Free Spice List

Tone

Oops - there was more to the list:

Vodkas (00/00/00)

Bellevedere (one from potato - not from rye); Black Death (beet); Bushman's (Australia) (100% cane); Chopin (potato); Hamptons Vodka (made in USA is made from corn -- 877-937-5951); Jinro Soju (a Korean vodka made entirely from sweet potatoes); Kamchatka Vodka 80% (California only - corn); Luksusowa (from potato); Glacier Teton Vodka (made with 100% Idaho potatoes); Milshire Gin 80 proof; Monopolowa (Potato); Popov Citrus & Tangerine; Relsk Vodka 80% (corn); Popov 80%; Smirnoff 80% & 100%; Smirnoff Silver 90.4%; Smirnoff Vodka 80% (corn); Smirnoff Citrus Twist 70%.

Zodiac Vodka (000.000.0000) (vp=05/30/02) (www.zodiacvodka.com)