Newly Diagnosed And Confused

[MikeM]

I just got diagnosed last week at 40 (small intestine biobsy, blood tests all positive).

My doc snail mailed me a pamphlet produced by CHEKMED Systems (Camp Hill, PA). As a newby I have been scouring this site prior to its arrival as I try to go gluten free. There are may discrepencies btween the "do not eat" foods listed in the pamphlet and on this site. While I do not have blind faith in Internet sites, I do believe they are more likely to contain current information.

The pamphlet's "Do Not Eat" list includes buckwheat, millet, amaranth, quinoa, distilled white vinegar, gin, whisky, and rye just to name a few. This site contains recipes that not only contain these ingredients, but actually call for using some of them as direct substitutions. I bring up the vinegar because there is a news release on this site regarding distilled vinegar that leads me to believe it might be more up to date. Also, this site lists all distilled beverages (whisky, rye) as safe for gluten free consumption.

It's hard enough changing the basis of everything I eat (pizza and beer as staples ), but to get conflicting information is making it even harder. Can anyone shed some light on the best place to get "the forbidden list" of ingredients?

[Ursa Major]

Hi Mike, and welcome to this board.

I have no idea who compiled your list, but it seems that somebody was very misinformed (and passing on this misinformation, via doctors, no less! ).

Buckwheat isn't even a grain, why would it be forbidden? And Amaranth, millet and quinoa are fine with a gluten-free diet as well. Wheat (all kinds, including spelt), rye, barley, triticale (a hybrid between wheat and rye) and oats are the ONLY forbidden grains on a gluten-free diet, as they are the only ones containing gluten.

I don't know about any alcohol, since I don't drink it anyway (I hate the taste).

Your best source for everything you need to start with is Nini. If you send her a PM, asking for the 'Newbie survival kit' (give her your e-mail address), she'll send you all the information you need to make it safely until you get the hang of the diet.

[CarlaB]

Distilled alcohol is supposed to be okay. Obviously, potato vodka, tequila and rum are not made from gluten containing grains, so are okay. The distillation process removes the gluten from grain alcohol, so all others should be okay as long as they don't add sour mash back in after distillation.

Both times I've tried distilled grain alcohols, I've had a reaction. However, both times I ate out in a restaurant, so it could have been the food.

Wine should be fine, too.

Welcome to the board ... I got diagnosed at 42, so I understand completely what you're going through!

[tiffjake]

  MikeM said:

I just got diagnosed last week at 40 (small intestine biobsy, blood tests all positive).

My doc snail mailed me a pamphlet produced by CHEKMED Systems (Camp Hill, PA). As a newby I have been scouring this site prior to its arrival as I try to go gluten free. There are may discrepencies btween the "do not eat" foods listed in the pamphlet and on this site. While I do not have blind faith in Internet sites, I do believe they are more likely to contain current information.

The pamphlet's "Do Not Eat" list includes buckwheat, millet, amaranth, quinoa, distilled white vinegar, gin, whisky, and rye just to name a few. This site contains recipes that not only contain these ingredients, but actually call for using some of them as direct substitutions. I bring up the vinegar because there is a news release on this site regarding distilled vinegar that leads me to believe it might be more up to date. Also, this site lists all distilled beverages (whisky, rye) as safe for gluten free consumption.

It's hard enough changing the basis of everything I eat (pizza and beer as staples ), but to get conflicting information is making it even harder. Can anyone shed some light on the best place to get "the forbidden list" of ingredients?

I agree with Ursula, but I just want to add that I read an article tonight about Millet, amaranth, quinoa, and other grains and how they are not gluten filled, but that they are simular, and may cause some people to get sick. BUT, I don't know of anyone who gets sick from these things. And I don't. And I eat things made from them. So perhaps the info you have was channeled through the same company/doctors as the article I read. They were looking at foods that contain gliadin, and drawing parallels, and talking about refractory sprue (the celiac disease that does not respond to a gluten free diet). Anyway, my whole point is that those grains are "in question" to some sources, but as far as I know to people on this site, those are ok. I only worry about wheat, oat, barley, malt, and rye. (ONLY? LOL).

And about buckwheat, the article said that it is OFTEN contaminated by wheat.

And I have gotten sick from Vinegar before, but I think that might have been a fluke. the more I learn, I am seeing that the distillation process SHOULD render it gluten free. It was vinegar in a condiment packet, so that packet might have been old or something, I have no idea. But as a rule, I do not avoid vinegar, and I do not get sick.

And alcohol.....I thought that vodka would be safe, therefore I could drink Smirnoff Ice. And I got soooo sick. Then I found out that Smirnoff Ice is a MALTED BEVERAGE and that is what made me sick! So plain vodka should be ok for you. (I haven't had the balls to try plain alcohol after that LONG NIGHT of sickness).

[Ursa Major]

Okay, I just googled chekmed, and the Jackson Gastroenterology site is their site. And here is some info I copied there from their diet information, which is directly opposed to what you say your pamphlet says.

  Quote

* Do not eat anything that contains the following grains: wheat, rye, and barley.

* The following can be eaten in any amount: corn, potato, rice, soybeans, tapioca, arrowroot, carob, buckwheat, millet, amaranth and quinoa.

* Distilled white vinegar does not contain gluten.

* Malt vinegar does contain gluten.

Here is the link to the site: Open Original Shared Link

Which is very accurate information, indeed.

[MikeM]

  Ursula said:

Okay, I just googled chekmed, and the Jackson Gastroenterology site is their site. And here is some info I copied there from their diet information, which is directly opposed to what you say your pamphlet says.

Here is the link to the site: Open Original Shared Link

Which is very accurate information, indeed.

Thanks Ursula! I guess I should have taken my own advice and checked their web information before I took their paper version seriously. Guess the Internet isn't such a bad place to get info afterall.

You mentioned in your first post that I could get a "starter kit" from Nini. Who is she and how do I get ahold of her? Sorry to be so clueless, but this is all happening so fast I'm just trying to keep up (and not get depressed when I open the fridge).

[Ursa Major]

Mike, you click on the link in the bar on the top right corner of this page that shows how many messages you have (if any). That will bring you to your control panel. You click on 'compose new message' on the left. You put 'nini' (without the apostrophies) into the 'recipients name' window. Into the message title you put 'newbie survival kit', and into the message window whatever you want. Don't forget to give her your e-mail address to send her kit to!

She'll reply to you soon I am sure. Her kit will be a life saver, I promise.

And until you get the hang of it, just eat stuff that is naturally gluten free! Any meat, vegetables, fruits, nuts etc. you don't even have to worry about. Do you have a health food store nearby? They have gluten free bread, cookies, pasta (tinkyada is the only one worth eating, don't bother with the rest) etc.

You'll be fine! I know it's hard at first, but it gets easier soon. And it will be worth it when you feel well again.

[Rusty]

I'm with you Mike...I'm 40 and recently diagnosed. I've been on the diet for about 3 weeks and feel at least 10 years younger already.

I recently purchased the "Gluten-Free Resource Guide = Delaware Valley Edition" for my area from the National Foundation for Celiac Awareness (www.celiacawareness.org) thinking it would be a worthwhile purchase. I read it and found some good info but found conflicting information also within it's own pages. There is also a lot of conflicting information on the Internet. In particular,Carmel Color is said to be made from corn in the US but "can be made from barley malt" according to US regulations. Well that's a big help! :-) Same goes for artificial colors and flavorings as well as natural flavorings.

I've been having issues for the past 2 days again (first time since the diet started) and I'm not exactly sure what it is. Gets a little frustrating.

[mommida]

I suggest you keep a food journal. We have the vinegar / distilled vinegar question on this board at least once a week. Like the previous poster said distilled should be gluten free, but a lot of Celiacs seem to have some reactions from it. If it says malt vinegar you should avoid it. You need time to heal, and to figure out if YOU have any problems with it.

L.

[mouse]

Welcome to the forum Mike. I am glad that someone told you to email Nini for her survival kit. I had her mail it to me as I use it to help people that my doctor sends to me for guidance. It is a great tool. Some things that you should be concerned about, is if you get any bread, do not use your old toaster, but buy a new one. You did not say if you live alone. If someone else lives with you, then your personal toaster needs to be off limits. You need to check your toothpaste, shampoo, meds and anything that could or does go in your mouth. It does sound overwhelming at first but it is very doable. The longer you are gluten-free, the easier it gets. You also need to make sure that you do not dip your knife in jam, condiments, butter or anything that you previously used when you made sandwiches, etc. My husband has his own and I have my own. If it is something we share, then I put a sticker on it and he knows not to double dip. I know it is hard to believe, right now, but as you heal, the slightest amount of gluten (ie a crumb or two) will make you sick. Six months from now you will be a pro and glad you went gluten-free. Just think of the future and how well you well feel. Oh, we also believe on this forum that no question is stupid. So ask away about anything as we have heard it all - at least concerning Celiac or gluten intolerance.

[gfp]

  Quote

The pamphlet's "Do Not Eat" list includes buckwheat, millet, amaranth, quinoa, distilled white vinegar, gin, whisky, and rye just to name a few.

Buckwheat: well its quite a heavy 'grain' even though its not really a grain but other than contamination is 100% gluten-free. However, as a starter and since you have damaged villi it might not be a bad thing to avoid until they are starting to heal.

Basically on grain distilled alcohol, many people do react, I do for one and again distilled alcohol is not good for someone with a messed up digestive system. The jury is still out on the grain spirits and I have yet to see anyone provide a full analysis of different alcoholic spirits from different sources that proves this, I have seen however many people say distillation "removes the gluten" but I have yet to see any proof it removes the breakdown products of gluten which are what causes the damage.

I rather think that in the absence of a clear and definitive analysis of vodka etc. the best advice is to give it a miss. There are all sorts of reasons for this, the gluten and its prducts are all alcohol soluble and who knows how this affects adsorbtion into the body?

Whisky and rye are one step further given they add something which is either the original mash or coloring flavorings which themselves may not be gluten-free.

[dionnek]

Might I add - NO LICKING ENVELOPES! I am new to this too and have gone 3 1/2 weeks gluten-free, all for nothing I feel. Last night I forgot and licked an envelope - well, at least now I know what my glutening reactions are. Although, I have not started to feel any better being on this diet yet (I had extensive damage to my intestines so I assume they are not healed yet), but I did recognize symptoms about 3 hours after I licked that stupid envelope. Some people might start to feel better in a few days, while others (like myself I fear) might take many months before they feel any better. Don't give up.

[Guhlia]

You guys might want to try Living Gluten Free for Dummies. It's a pretty good book for newbies.

[Guest nini]

I've sent you the Newbie Survival Kit, Mike... let me know if you have any more questions.

[cheeka]

  nini said:

I've sent you the Newbie Survival Kit, Mike... let me know if you have any more questions.

Hi Nini,

I'd love the Newbie Survival Kit too! You can send it to michellewoollard@msn.com.

Thank you!!

Snaffleblue

[Guest nini]

  cheeka said:

Hi Nini,

I'd love the Newbie Survival Kit too! You can send it to michellewoollard@msn.com.

Thank you!!

Snaffleblue

I've sent it to you. I do not always see the posts on here asking me for the kit, so if anyone wants this PLEASE e-mail me at nisla@comcast.net and put "request newbie survival kit" in the subject line.