Newbie!
 

I've been lurking on the gluten sensitivity forum for several days now. I normally post on myasthenia gravis and autoimmune diseases.
My GP and I have decided I've got gluten sensitivity, and she drew blood to test for celiac. I had decided on my own to try a gluten free diet for a few days, and was amazed at the difference! Where I had had frequent diarrhea, LOTS of gas, stomach cramps, and up to 10 bm's a days, on the few days I was gluten free I was virtually free of all of those symptoms, plus only "went" 2 or 3 times a day! WOW! :D Then I reintroduced gluten and everything came back with a vengeance. On the strength of that experimentation, she wants me to stay gluten free., to see if I stay symptom free.
So I wanted to introduce myself, since it seems I will be availing myself of some of the recipes. I've already copied some of them, though I've not made any of them yet.
Any advice anyone can give me will be most welcome.
Hugs,

WELCOME LOIS!! I'm so glad you have seen positive results on a gluten free diet!

Claire

The best advice is to just keep reading and never just believe someone when they say something is gluten free. 9 times out of 10, they have no idea what gluten is. Read everything you can about celiacs, your best answers come from those of us who live it too. Welcome.

Hi! Welcome to our little gluten free haven! It will be interesting to see if you test positive, but no matter what, you have already witnessed the results of possibly the best test of all.

I think the best advice when starting out is to keep your diet relatively simple, focusing on whole foods (meats(unless vegetarian), vegetables, fruits, rice, potatoes, nuts. That is not only healthier and will aid in healing your gut, but it will help you to keep your sanity when at the grocery store. Slowly, you can add in processed foods. It is just way too overwhelming to read every label at the grocery store as you shop...when you have no idea of what items are safe and not safe.

I do buy a fair share of processed and specialty foods, but I worked into them. Do use the safe food lists you will find as a starting point, but remember that ingredients change, and lists can be outdated. So, it is important to learn to read labels routinely. Labeling laws have improved a lot, but you still need to be cautious and remember to watch for things like barley and malt.

Up under Useful Sites you will find links to safe food lists, forbidden food lists, etc.

I'm going to start a thread for favorite gf specialty products. The market is booming, and there are much better choices than even five years ago. But, still, some taste like cardboard..so it is nice to know what products people have tried and liked.

Oh, gosh, so much more to say, so just stay active here!

Cara

Thanks, all, for the replies. I cannot believe the difference just a few days can make. I've been gluten free since Tuesday, and today had no tummy cramps, little gas, and only 2, count 'em!, 2 bm's!!!! Mamma mia, so this is what life is! I'd forgot how wonderful it is to be normal. :D And not to be tied to a toilet!
Since I live in a small town, a lot of specialty ingredients, like the different flours that are permitted, are just not available. Unless some of them can be found at Walmart? But I chanced on some rice cereal for babies at the store, and noticed it is made from rice flour. I bought 2 boxes, figuring that with a blender or my food processor, surely I can make it back into rice flour. I've still got to check Walmart and the larger of our 2 groceries for plain corn meal. The cheap grocery has about 4 different kinds of corn meal mix (I live in the south, after all) but not a one that is free of flour. Of course, since we have a fairly large Hispanic community, masa harina is availble. It's corn flour, and I believe is wheat free. And I bought corn tortillas today, they're gluten free.
Now all I have to do is learn how to bake and make bread without wheat flour.
In your experience, how long will it take to get the results of the Celiac test back? All my doctor could tell me is that it is a rather specialized test, and takes longer.
Once I've been gluten free for while, I'm going to try reintroducing milk into my diet. I had cut it out over a year ago, and gone to soymilk, thinking I was lactose intolerant. I'm wondering now if it was the gluten all along, rather than the lactose. Or could I have both?
I've also got radiation proctitis, damage caused by radiation treatment for cancer, so my gut is not normal by a long stretch.
keep the good advice coming!
Hugs,

Hi Lois,

Welcome!!

You may find you might be able to add some dairy back into your diet after your intestines heal. The tips of the villi produce an enzyme called lactase. Lactase is responsible for breaking down Lastose [the sugar component in dairy]. If indeed your villi are damaged, once they are healed and producing lactase again, you could very well be able to tolerate some dairy.

http://en.wikipedia.org/wiki/Lactose_intolerance

Good luck in your GF Journey!!

Usually about a week to get the test results back. I'd be surprised if it was any longer than that.

It is possible to have gluten sensitivity causing bad symptoms without testing positive for celiac disease, but it is good to have those tests run.

A fair amount of people with gluten sensitivity/celiac disease also have problems with cow's milk. Lactose intolerance can be temporary, and sometimes successfully added back in. You can also have casein intolerance (the protein part of the milk), and that is usually with you for the long haul.

The sensitivity of antibodies to casein, beta-lactoglobulin, and ovalbumin in active coeliac disease varied from 36% to 48% without significant difference between IgG and IgA antibodies.
Antibodies to dietary antigens in coeliac disease. PMID: 3775259 Oct !986


Cara

Thanks, again, y'all! I've discovered another plus of being gluten free other than just the lack of gut problems. I'm not nearly as fatigued! I suppose that part of the fatigue I was putting down to the MG was actually coming from the gluten sensitivity. Plus, I've actually lost 3 pounds since Monday!! :D
Question- What kind of gluten free products can I expect to find at Walmart? Is there a special gluten free section, or anything like that?
Hugs,

Hi Lois,

Glad to hear you're feeling better!! As for Walmart...the ones I've been in WI do not have a a special "health food section". BUT! If you look at a lot of Walmart branded food - you'll probably see a "Gluten Free" stamped on the back of it. They are quite good about labeling things. I think I looked at Walmart's version of Reese's Peanut butter cups...it said Gluten Free on the back. So...browse around...I'm sure you'll find lots of goodies!!

Thanks, Al! I'm definitely learning to read lables. We stopped at McDonald's for supper, and I got the side salad (no gluten there!), picked out a dressing, dumped it on, and THEN read the ingredient list. The one I picked has soy sauce in it, which has wheat flour. So my daughter got the salad! I've got to learn to read the lables BEFORE I eat the stuff!
Hugs,

Hi Lois,

You can order gluten free specialty items off the internet too. For flours, it's really hard to grind them fine enough in a food processor/spice grinder. I like Bob's Red Mill flours because they also test them for gluten. If you get really serious about baking, you can buy your own flour mill, but the good ones cost upwards of $200.

There are other on-line gluten free stores. I can't really recommend one because I can find everything I need where I live. I'm pretty fortunate that way. If you have to be gluten-free, Boulder is one of the best places to do it! Maybe someone else can give some recommendations?

Claire

Welcome!! :)

I use my coffee grinder to grind up my rice. Its way cheaper than buying a 'grain mill'.

Wow...
 

That is great Lois...that you are feeling better.

Welcome here! <claps hands>

It takes a bit of time to find the "tricks" and keep favorites in your
day.

First off, find some Tinkyada pasta in a store near you. I think pasta is
hard to do without.(even tho I don't eat it alot myself). Tinkyada has a lower
glycemic index and helps with blood sugar too. Many non CD's use it just for
that reason! It is most like regular semolina pasta IMO, in mouth feel.

I like Kinnikinic bread (sorry about the spelling)
and also use Whole Foods Prairie and Tomato/basil. (keep in freezer)
But if you are a cooker/chef you can make many things yourself!

This is a wonderful forum and group of people..so welcome here!;)

I'll have to look into getting a coffee grinder, Kim. Thanks for the suggestion. Mrsd, Tinkyada pasta may be kind of difficult to find around here. We're what you might call "small town". The town where our local Walmart is just got its first traffic light! :D However, if we go to one of the larger towns, I'll definitely keep an eye open for it.
I'm getting really good at reading lables, y'all! Question- does "malt added", or "malt flavoring" mean barley? And isn't barley a no-no for us? I thought so, so I scrupuously passed up all of the rice cereal that listed malt. I finally found one that was popped brown rice. Showed my daughter and she said "Yuk!" But looks good to me!
Thanks, Claire for the link to Red Mill flours. I may not be able to afford them, but if I get desperate I might splurge!
Hugs,

Don't forget the Internet! You can always order stuff and have it delivered. :)

Malt is gluten. Steer clear. That was one of the first mistakes I made.... buying wheat free cereal that had malt in it. The second one was a couple of those delicious Lindt chocolate bunnies. They have malt too. I had a migraine for a week. Hard to forget those kind of consequences. :o (That was four years ago now.)

breakfast ideas
 

Good for you! We have given up on boxed cereal for breakfast. We often have the following for breakfast:

kasha (toast 1/2 cup buckwheat groats in dry skillet, add 1 cup water, bring to boil and cook for 10 minutes or until boiled dry, add blackstrap molasses and a bit of soy/rice/almond/cashew/etc. milk!).

cooked rice cereal (put 2.5 cups brown rice and 11 cups water in crock pot on low overnight. In the morning, stir in 1 cup liquid-of-your-choice, some cinnamon, raisins, and chopped walnuts. Let raisins plump, then serve. Top with maple syrup and a bit of milk-of-your-choice).

chopped fresh fruit combined with chopped nuts, seeds, dried fruits

cooked millet with frozen berries stirred in.

shake (blend in blender: 6oz water, 6oz milk-of-choice, 1 orange, 1 banana, 2 TBS flax seeds)

fruit smoothies ...

Hi lois
 

So glad to see you here.:D
Just like to say that there is lots of good advice here, also if you look for health food stores in your area, lots of good stuff in there to eat.

I think the best advice I got when I first started going gluten free was to find something you can have as a treat. ie cake, cookies, these things I craved, then I found a few reciepes and away I went. My husband also eats gluten free, which is really great. He says now that he prefers the way we eat now, and in fact finds that he doesn't even miss it.

Isn't it amazing how your energy level goes up. Take care, Patricia :)

yes,
 

the internet may be necessary for you, Lois.

I do grits for breakfast for hot cereal. You can add things, like honey, bacon etc..and it is quite good. After I went gluten free.. I found oatmeal very problematic. But I can do whole oats, granolas, the natural kind. I don't understand this myself.

Gorilla Munch is gluten free, you can get it from Amazon.com
http://www.amazon.com/EnviroKidz-Gor.../dp/B000FBL8FU
Other flavors are there too! Even my son's cat eats it! Loves it, begs for it as a treat. :rolleyes: They have started carrying at Kroger's too. Some local stores will special order things if you ask. Give that a try too.

I am not a celiac..but just intolerant. After a while, I could use some things
with malt in them..small amounts. People vary tho.

With your MG, you may need strict observance and you may find an improvement with the MG over time, since it is autoimmune.

Have you seen this link for gluten-free by mail?

GLUTEN-FREE FOOD VENDORS

great list!
 

Great links.

I use Kinnikinnick bread and pancake mix alot. I am going to order it for
delivery up North next year. My local store only carries the white bread.
I'd like to try the dark with flax one.

The pancake mix is really good. My son likes it best. It is not so heavy on
the "corn" which seems common in others. And our store is often out of it.

https://secure.kinnikinnick.com/inde...odcatid/5.html

I don't eat enough bread to bake my own...so I prefer commercial ones.
Maybe when I retire (finally) I'll give it whirl.

Thanks for the links! Mrsd, apparently I'm like you, just gluten sensitive, but not celiac. The results came in the mail today, negative for celiac. Now, does that mean that I definitely do not have celiac? (My MG is seronegative). If it's definitely not celiac, but just gluten sensitivity, does that mean I can very occasionally sneak in some gluten? I'm afraid to try it since the improvement has been so dramatic. No more diarrhea, no more cramps, no more gas than normal people have, no bloating, plus nowhere near as much fatigue as I was having. I feel like I've gotten my life back!
Hugs,

Gee, Lois...
 

Most of the folks who follow the GF life, do not cheat.

I sort of admit it, that I do very occasionally. But this is not a popular point
of view.

A true Celiac cannot.

I have found after more than 2 yrs GF, that tiny amounts of the malted
ingredients in cereal do not set me off. I do not eat any wheat ones however.
Only the rice and corn ones. Like Crispix, Honeycomb. Only the instant oatmeals, I cannot do them.

There is a granola one called Bear Naked which has whole oats, and that does not bother me either. But I cannot cheat with pasta...I found that out dramatically. My hands swell up rather quickly.

I think it is possible that once your GI tract settles down, other things show up to upset you. Some people find dairy a problem, or corn, or soy.
I'd really be up the creek if corn turned on me. I use corn chips with tuna/salmon, and other things, alot for bread substitutes. I eat nuts instead of pretzels, or other cracker snacks. I use Orville redenbacher corn cakes, and Quaker rice cakes for peanut butter. But I don't search out cross contamination, etc, because I am not battling severe issues. I started out years ago cutting out bagels, at first, then bread. Then this board started on OBT, and I started reading etc and getting better at it.

But admitting to a cheat or cutting corners, is not really acceptable to the GF or Celiac bunch. So don't follow my example, or I might not be welcome here anymore!:p

Hi Lois,

What tests did you have run? I am "just gluten sensitive" myself. I don't have the celiac genes and I've never been tested for celiac. For many years, I cheated fairly regularly, but cutting down on gluten dramatically helped my digestion. However, I developed many other food intolerances, including dairy, corn, quinoa, soy, and nuts. I can't help but think that if I had truly given up gluten years ago, I would not have developed these other food intolerances. At the time, it wasn't recommended that I go totally GF. If I only had to give up gluten now, I would be so grateful!

If a GF diet is working for you, I say listen to your body!

Claire

Mrsd, don't worry, I won't tell on you! :D I really doubt if I'll "cheat" since I feel so much better GF. I think I must have gotten a little bit of hidden gluten in my lunch yesterday, since I started to have a few symptoms today, but it must not have been much, since they've already died down. Unless, like Claire mentioned, I'm developing other sensitivities. But I think it was hidden gluten. I got carry-out from a restaurant, salad, green beans, corn and sausage. Then wondered after I ate the sausage whether it might have flour in it as a filler.
Claire, the only test I've had was a blood test, and I think they called it a celiac panel, but I'm not sure. All I know is that my GP said it was to test for celiac, and it came back negative.
2 of my kids, who also have digestive problems, are going to try the GF diet to see if it helps them. Thanks to all of you for your support and ideas.
Hugs

Some day, if you are ever in the mood to do it, you should request copies of the lab work. It would be interesting to know what tests were run, and if any were positve. For example, sometimes the antigliadin IgG is positive, but disregarded as non-specific for celiac disease, so your doctor will tell you that it was negative for celiac disease.

I'm glad you decided to try the diet, anyway, and trust your response to it.

Cara

I bring up "cheat"...
 

because in the medical world the word "compliance" is what we are really
talking about.

The compliance for drug therapies for example is quite poor. People don't
realize it, but only about 40% take their meds properly or reliably. That is
why we see the emphasis on timed release type drugs, and the move to
once a day dosing.

There is a huge payoff in the beginning with the GF life. When we start to
feel better...wow... there is alot of reinforcement to continue. Then months pass, maybe years, and a little voice says "maybe I can have "this" just this once. I think this is just human nature.

This happens with supplements. I have lost count at how many times since
my son left home to be on his own, that he has decided he is "cured" of ADHD, and GF has cured his hands and GI symptoms that plagued him. In the end I
get a phone call or email, "Ma I don't feel right" or some such complaint, and the standard answer is ...how is your fish oil doing? Duh? Need I say more?
I have done this myself! So I know how easy it is to slip into the other mindset ;) Right now he is doing well on GF again, and his moods and general energy are very good. And I did get him on 1mg B12 daily, and methylfolate, and zinc. He takes a B-complex too. And magnesium, but not every day mag.

It is really important to realize that if GF works for you, then you probably are not absorbing nutrients reliably from food. So some attention to this area may also help you alot. We have the Vitamin forum here, to deal with that ;)

There is a connection between GF and weight loss. Dr. Kittley's book was posted on the old board, and I bought it and it is really good. Lois, there is a website too, so I'll post that again:
www.obesitysanswer.com
Dr. Kittley recommends trying GF to deal with resistant weight gain, or weight that is impossible to lose. I think the first thing I noticed was the edema that plagues my hands/feet went away on GF living. Semolina pasta returns the swelling within an HOUR! I found Dr. Kittley's book on Amazon. She covers other food intolerances, too (I found for example that onions were not so good for me anymore--doing an elimination for them showed that they were making me unwell. Also orange juice was inflaming my arthritis. Who would ever expect good old orange juice as a culprit? eh? :confused: )
Her book is really really good and useful. It is unique in the "diet book" world.
I can't recommend it enough.

Thanks for the replies. I don't think I will be tempted to cheat. I had a slight repeat today of some of the symptoms, so I think I must have gotten some hidden gluten in a food. Or else it was a reaction to the several oranges I ate. I don't usually eat fruit since it does tend to give me the runs, but thought I would try it thinking the GF diet might have corrected the problem I was blaming on the fruit. But apparently not!
Thanks, Mrsd, for the book reference. I'll look into it.
Hugs,