Help! I Am Really Frusterated And Overwlemed!

[lemonade]

Hello

I havent been diagnosed as of this second with celiac disease, because I just went for the blood work this morning, but I have many, if not ALL of the symptoms, related to celiac disease.

I have soooo many questions on Gluten free diets and I really need them answered. I was hoping that someone (if not many ppl) could give me there advice and answers. Thanks....

1. How careful do we need to be?

Can i get a reaction from cosmetic products, like soap, shampoo, etc...can tiny tiny amounts of gluten affect me? If this is correct, what products are safe?

2. What about milk products?

Are they safe? What is casein? What milk products are safe? Is philidelphia creamcheese okay?

3.Do any of you eat peanut butter? Could there be cross contamination?

4. Do any of you buy things in bulk?

5. Are soy nuts okay?

6. Do rice packages need to say GLUTEN FREE, in order for them to be SAFE?

7. Is cocoa powder okay? what brand names do u use?

8. Is soymilk okay? what brand names do u use?

9. What about spices?

10. If something that is a safe food, doesnt say GLUTEN FREE, is it really unsafe? such as tofu?

11. Is tofu safe?

12. Is becel safe?

13. What are other hidden ingredients that you have discovered in foods?

Thats all for the moment.

Thanks soo much for answering my questions.

Lemonade

[dlp252]

Hi and welcome! I'm fairly new to all this myself but I'll give my opinions on as many of your questions as I can.

1. You do need to be careful. A little bit of gluten can definitely hurt you...you may not feel the effects right away but you most assuredly will still be damaging your intestines even with a little bit, if you truly have celiac or an intolerance. As far as products, some people can react to products used if it is likely to get into your mouth in any way...think hand lotion and then touching any area close to your mouth.

2. Many people are also intolerant to either the lactose (which is the sugar) in dairy or the casein (the protein) in dairy. I am intolerant to both gluten and casein, so no wheat, rye, barley, oats or dairy for me. All diary has casein, but some people have been able to tolerate goats or sheep's milk products. I'm not taking a chance right now because I'm still having bowel issues.

3. Love peanut butter. I eat a natural kind with no added ingredients...just peanuts and salt.

4. I don't often buy in bulk. I've heard that the bulk bins can be a source of contamination because people often use one scoop for a couple of different items, or even if they don't if they've scooped flour then scooped nuts, it might be enough in some people to cause a reaction.

5. Soy nuts are okay if you tolerate soy well.

6. Packages don't necessarily have to say gluten free to be okay, but look for any added ingredients. I picked up a rice pilaf mix (the kind in a bag, not in a box) at the health food store and when I read the ingredients found barley in it.

7. I do use cocoa powder, but I have to be careful of dairy, so I read ingredients very closely...the current one is one I bought from Whole Foods but can't remember the name right now.

8. I use soymilk sparingly because I haven't yet determined if I'm sensitive to it. Silk brand is safe as are many others, but some do use malt in their processing so be careful.

9. Can't help on spices, I don't use anything excep salt.

10. Kind of the same answer as #6. You just have to look for unspecified ingredients such as "natural flavorings" those are the kinds of things that can be trouble unless they specify where the flavoring comes from.

11. I don't eat tofu so can't comment.

12. Sorry don't know what becel is.

13. Mostly anything that says flavoring unless it specifies where it came from...although there are many other things which are hidden.

[Guest stef 4 dogs]

Hi and welcome! I'm fairly new to all this myself but I'll give my opinions on as many of your questions as I can.

1. You do need to be careful. A little bit of gluten can definitely hurt you...you may not feel the effects right away but you most assuredly will still be damaging your intestines even with a little bit, if you truly have celiac or an intolerance. As far as products, some people can react to products used if it is likely to get into your mouth in any way...think hand lotion and then touching any area close to your mouth.

2. Many people are also intolerant to either the lactose (which is the sugar) in dairy or the casein (the protein) in dairy. I am intolerant to both gluten and casein, so no wheat, rye, barley, oats or dairy for me. All diary has casein, but some people have been able to tolerate goats or sheep's milk products. I'm not taking a chance right now because I'm still having bowel issues.

3. Love peanut butter. I eat a natural kind with no added ingredients...just peanuts and salt.

4. I don't often buy in bulk. I've heard that the bulk bins can be a source of contamination because people often use one scoop for a couple of different items, or even if they don't if they've scooped flour then scooped nuts, it might be enough in some people to cause a reaction.

5. Soy nuts are okay if you tolerate soy well.

6. Packages don't necessarily have to say gluten free to be okay, but look for any added ingredients. I picked up a rice pilaf mix (the kind in a bag, not in a box) at the health food store and when I read the ingredients found barley in it.

7. I do use cocoa powder, but I have to be careful of dairy, so I read ingredients very closely...the current one is one I bought from Whole Foods but can't remember the name right now.

8. I use soymilk sparingly because I haven't yet determined if I'm sensitive to it. Silk brand is safe as are many others, but some do use malt in their processing so be careful.

9. Can't help on spices, I don't use anything excep salt.

10. Kind of the same answer as #6. You just have to look for unspecified ingredients such as "natural flavorings" those are the kinds of things that can be trouble unless they specify where the flavoring comes from.

11. I don't eat tofu so can't comment.

12. Sorry don't know what becel is.

13. Mostly anything that says flavoring unless it specifies where it came from...although there are many other things which are hidden.

Hey Lemonade,

partners in confusion!..... There is a great Gluten Free/Smart Food list and a Delphia List that are extremely helpful in determining what you can eat! Always check your labels and if your not sure call the 1-800 numbers on the back of foods and ask! Food Shopping is a challenge!~ I'm told it gets easier. Right now I'm at the no less than 3 hour mark for shopping because of label checking. I was not so happy at first with this web site, I didn't feel like anyone answered my questions! But then I was encouraged to stay on and I jumped in on chats just to listen to info. Hang in there. I'm 40 and Am un'doing alot of years of eating whatever the hell I wanted! I really am mourning some of my food losses. Any support you need, lots of people here can help.

stef 4 dogs

[IronedOut]

Hey Lemonade,

partners in confusion!..... There is a great Gluten Free/Smart Food list and a Delphia List that are extremely helpful in determining what you can eat! Always check your labels and if your not sure call the 1-800 numbers on the back of foods and ask! Food Shopping is a challenge!~ I'm told it gets easier. Right now I'm at the no less than 3 hour mark for shopping because of label checking. I was not so happy at first with this web site, I didn't feel like anyone answered my questions! But then I was encouraged to stay on and I jumped in on chats just to listen to info. Hang in there. I'm 40 and Am un'doing alot of years of eating whatever the hell I wanted! I really am mourning some of my food losses. Any support you need, lots of people here can help.

stef 4 dogs

Hey stef 4 dogs - Look at you go!! Glad you did hang with us. Great advice for Lemonade.

Here is the link to the lists on Delphi. It is another Celiac forum so you'll have to register but it is free.

Open Original Shared Link

Keep asking the questions. Folks here have been through a lot so there's a pretty good chance someone will have an answer along the way.

[lemonade]

Hi and welcome! I'm fairly new to all this myself but I'll give my opinions on as many of your questions as I can.

1. You do need to be careful. A little bit of gluten can definitely hurt you...you may not feel the effects right away but you most assuredly will still be damaging your intestines even with a little bit, if you truly have celiac or an intolerance. As far as products, some people can react to products used if it is likely to get into your mouth in any way...think hand lotion and then touching any area close to your mouth.

2. Many people are also intolerant to either the lactose (which is the sugar) in dairy or the casein (the protein) in dairy. I am intolerant to both gluten and casein, so no wheat, rye, barley, oats or dairy for me. All diary has casein, but some people have been able to tolerate goats or sheep's milk products. I'm not taking a chance right now because I'm still having bowel issues.

3. Love peanut butter. I eat a natural kind with no added ingredients...just peanuts and salt.

4. I don't often buy in bulk. I've heard that the bulk bins can be a source of contamination because people often use one scoop for a couple of different items, or even if they don't if they've scooped flour then scooped nuts, it might be enough in some people to cause a reaction.

5. Soy nuts are okay if you tolerate soy well.

6. Packages don't necessarily have to say gluten free to be okay, but look for any added ingredients. I picked up a rice pilaf mix (the kind in a bag, not in a box) at the health food store and when I read the ingredients found barley in it.

7. I do use cocoa powder, but I have to be careful of dairy, so I read ingredients very closely...the current one is one I bought from Whole Foods but can't remember the name right now.

8. I use soymilk sparingly because I haven't yet determined if I'm sensitive to it. Silk brand is safe as are many others, but some do use malt in their processing so be careful.

9. Can't help on spices, I don't use anything excep salt.

10. Kind of the same answer as #6. You just have to look for unspecified ingredients such as "natural flavorings" those are the kinds of things that can be trouble unless they specify where the flavoring comes from.

11. I don't eat tofu so can't comment.

12. Sorry don't know what becel is.

13. Mostly anything that says flavoring unless it specifies where it came from...although there are many other things which are hidden.

Donna,

Thankyou soo much for yor reply.

Lemonade

[Guest stef 4 dogs]

Hey stef 4 dogs - Look at you go!! Glad you did hang with us. Great advice for Lemonade.

Here is the link to the lists on Delphi. It is another Celiac forum so you'll have to register but it is free.

Open Original Shared Link

Keep asking the questions. Folks here have been through a lot so there's a pretty good chance someone will have an answer along the way.

Hi Julie! I really would be lost without all the encouragement from this site! FyI, Lemonade? Just found out Swedish Red Fish are gluten free. Yeah! Go junk food!!!!! chins up......

stef 4 dogs

[StrongerToday]

I think one of the things you need to remember is that every body is different and reacts differently to every food. My experience may be totally different then what you're having. (If you've ever been pregnant, it's very similar - everyone will give you their story but you have to sort through it all and find the best answer for you.)

Yes, read everything you can find. This board has lots of helpful discussions, articles and lists. Check into a local group too. Go to your library - you'll want to read Wheat Free/Worry Free, maybe Dangerous Grains and there are others as well as cookbooks to find good things to eat. Read every label on everything - shampoo (3 kinds of wheat in mine) lotions (in my foot lotion) and hairspray too!!

Don't hesitate to call companies and check their websites. Don't hesitate to ask us questions - even gross or personal ones.

Personally, I keep my diet fairly simple with roasted or grilled meats and fish, rice, veggies, potatoes and some fruit. I buy my bread on-line and eat a lot of nut butters. Sadly, I've given up dairy for the time being but plan to re-introduce it soon. (Some people do well with a lactose supplement too.) I try to avoid soy if I can, but will eat foods with soy in it. I do drink Almond Milk, but not Rice milk (my store only has the kind w/ gluten in it) and try to avoid soy milk... although I've been known to have some soy ice cream as I haven't found anything else like ice cream that I can have.

Good luck and happy reading!

[julie5914]

Hope I get all these right - I'm still struggling to heal myself.

1. Be as careful as you can. No "natural flavors" if you can't confirm with the manufacturer that it's safe. I do the same with "modified food starch" or "vegetable protein" or MSG. I am careful about cosmetics and hair stuff just because I'm being extra careful. I don't think you always have to do that if you don't have DH - the skin reaction.

2. Milk is only bad for some celiacs. If you go gluten free and don't notice improvements in your symptoms or they get a little better and then worse again, try cutting out milk. It could be either lactose or casein - it's hard to tell. Cream cheese is not ok if milk is a problem for you.

3. Peanut butter is usually ok, but always check ingredients for everything. Go to the site index for this site, and you should be able to navigate around and find a list of ingredients to look out for. I used to have to take this to the store before I had a handle on it.

4. YOu can buy things in bulk if the ingredients all check out.

5. Soy nuts are usually ok gluten wise.

6. Rice packages do not need to say gluten free, but you always need to check ingredients. The stuff with seasonings included is usually not OK. THe plain stuff usually is.

7. Cocoa is usually ok, but check with the manufactuer.

8. I drink soy milk a lot because I need the protein and milk is not ok for me. I think the brand I use most is Silk in vanilla flavor. I've found that the kind in the refridgerated section is often cheaper than the ones on the shelf for whatever reason.

9. Spices are ok unless it is a spice mix. Spice mixes make me wary because there are usually those vague ingridients like natural flavors or MSG.

10. Food doesn't have to say gluten free to be safe. That just helps you know for sure that you're good with that product.

11. Tofu is ok.

12. I don't know what becel is.

13. I check absolutely everything. Most soy sauces, some BBQ sauce, worchestire sauce, A1, stir fry and teryaki sauces are no good, but you can find them gluten-free. Dressings are always a pain in the tail too, esp. if you're avoiding milk too. Annies makes the best safe dressings I have had. I have learned that eating out is almost always a sure bet to get glutened no matter how hard you try. Sucks. Soups are almost never safe unless they are organic. Frozen dinners are almost never safe unless organic as well. Amys makes some gluten-free dinners that you may be able to find in the organic section of your grocery store. I love these.

[Kristen2Denise]

Hi there - I've been gluten free for about a year and my fiance bought me the Gluten Free Bible right off the bat and I love it --- it's a great resource and touches on almost everything - I highly recommend buying it!

Also, as you switch to gluten free stuff remember they just aren't the same and it will take a while to get used to the differences. My sister was diagnosed a year before me so I had figured some stuff out already when I went gluten-free, but I honestly recommend not overdoing with all the gluten free alternatives. Letting your body sort of forget what things used to taste like helps! That being said, a year later I have found all kinds of gluten-free alternatives that I really like!

Good luck

[dlp252]

Donna,

Thankyou soo much for yor reply.

Lemonade

You're welcome!