Topic: celiac disease, diabetes 2, & chronic lymie; anyone with ALL of these? HELP please.
bettyg
Unregistered
posted
My new LLMD called me today saying I have celiac disease of the digestive tract. 3 top things I'm allergic to are:
dairy, GLUTEN, and eggwhites! sounded like more too but she hasn't sent me that lab yet....
I have NOT done the "elimination diet" she wanted me too. I was just trying to get the 6 boxes of more blood, BM, urine, saliva, & mouth swabs done before I thought about this.
What foods are you eating or can you refer to a specific area with good info and possible recipes?
I googled celias disease and 15 million things popped up! I went to 1st site by NIH, digestive dseases, and printed their entire celiac disease info of 20 pages.
In diabetes education 2.5 yrs. ago, I was taught to eat certain foods; now majority of those things are FORBIDDEN forever!
I see once I start the gluten-free diet; I'll be eating this way the rest of my life or suffer the consequences of not following my new way of life.
How are you folks doing it?
All advise appreciated; I'm in right field and can't see the batter hitting the ball at me right now...
The easiest way to make this diet change is to stick to meats, vegetables and salads (watch salad dressings) and low-sugar fruits.
Then get a good gluten-free cookbook to cover breads and baked goods. I am pretty sure that flax seeds are used as an egg replacer.
I'll look at my cookbooks and get back to you on the names of the best 2 or 3.
Health food stores carry many gluten-free products, but some are expensive and you need to watch for sugar content. Can get things like rice pasta or quinoa etc. Also even gluten-free brownie mixes for a special treat. Substitute soy, rice or almond milk for cow's milk in recipes.
Stevia is the best sweetener or small amounts of honey.
Once you make the diet change I think you will be pleasantly surprised at how much your digestion improves. Hubby slips up every now and then and he usually knows right away if he ate something he should not have.
He is technically not allergic to any of these things, but just seems to have intolerances and has had testing which showed abnormal absorption of casein (milk protein) and gluten. He can eat eggs though.
Good luck and just take it one step at a time.
The magazine Liz provided is good -- a sample issue would give you an idea of all the different specialty food products available and there are usually a few recipes as well.
Bea Seibert
P.S. My mom has lactose intolerance and she makes her cornbread with apple juice instead of milk. Looks a little strange -- but tastes pretty good.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Betty, I have Celiac disease and chronic lyme.Luckily I have been cooking GF for 12 years for my daughter(5 years for me), so I have it down pretty well.
You will feel so much better on this diet. You may even get rid of some sympoms you thought were lyme related!
Here are some places to get started: www.delphiforums.com/celiac (the best for info and recipes, advice). You can join for free with basic membership.
www.glutenfree.com This is the website for the Gluten Free Pantry, a company that sells GF products. They also have terrific recipes using their mixes.Their breadmix, brownies, muffin mixes are the best.
I am not diabetic, but many Celiacs are, so you should be able to manage this diet. Your other allergies and intolerances may go away after your gut heals! If you need any other help, you can PM me. Cindy
-------------------- Cindy Posts: 227 | From VA | Registered: Sep 2005
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I too have celiac disease, and have been researching this for some time. I do not find the diet that difficult. Health food stores, and gluten free catalogs carry many gluten free products. Just be aware there is gluten in everything. The best reference I found is from CSA/USA. www.csaceliacs.org The best purchase I made was their "The CSA Gluten-Free Product Listing". It lists hundreds of products by brand names that you can eat. Also "Wheat-Free, Worry-Free" by Danna Korn is a great book. It tells everything you need to know (and then some) about celiac disease. As this is OT you can e-mail me personally if you like, I can give you many useful tips. I am not diabetic, but I did have to follow a candida diet also (no sugar). Mary V
Posts: 23 | From Ft Myers area, Florida | Registered: May 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I, too, have celiac disease and chronic Lyme. I do not have diabetes, but type 1 diabetes and celiac disease are related genetically. So is autoimmune thyroid disease (I have that, too).
In addition to the excellent recommendations already given you, another good celiac organization is the Gluten Intolerance Group at www.gluten.net.
They have an excellent magazine-type newsletter you can subscribe to.
There are many local celiac disease support groups that are affiliated with various national organizations.
I belong to my local one and it's a good way to get started, although lately I've been too sick with Lyme to go.
Danna Korn, the author already mentioned, is an expert on gluten-free living. She lives here in San Diego where I am and she is an excellent speaker and writer.
Her newest book is "Gluten-free for Dummies" or something like that - one of the new books in the "Dummies" series.
Many health food stores and even supermarkets are offering more gluten-free choices. If you have a Whole Foods health food store anywhere near you, they have the best selection.
There are mail-order companies where you can order gluten-free foods. They advertise in the newsletters of the various celiac disease associations.
However, pre-made gluten-free food such as bread, etc, is usually much more expensive than the regular variety.
Some national restaurant chains are even offering gluten-free menu selections, but you always have to be very specific with the server or manager to make sure they follow instructions.
Outback Steakhouse is one chain that has a gluten-free menu that you can request or download from the website.
Even McDonalds lists on its website which items are gluten-free. I'm not saying I eat at McDonalds, but given that I have to travel a long distance to see my Lyme doctor, sometimes it's the only place on the road to stop.
It is easier than ever to be gluten-free. Starting this year, the new federal labeling laws require manufacturers to mention if their products contain any of the top eight allergens.
This means the new labels will have to say if they contain wheat. They do not include barley, rye or oats which are the other glutens we have to stay away from.
But wheat is usually the most common culprit for us.
Read every label. Buy the books from the various celiac disease associations that list which products are gluten-free or not. This listing can change frequently for manufactured/processed foods depending on the latest ingredients.
ALWAYS CHECK YOUR MEDICATIONS FOR GLUTEN!
I call every pharmaceutical manufacturer before I start any antibiotic. Some fillers and binders can contain gluten.
I personally always pay more to get the name brand of an antibiotic because they are easier to check ingredients on than the generics. But some celiacs do fine with generics.
Even some over-the-counter medications have gluten.
For example, Tums cannot guarantee they are gluten-free. There is only one type of Immodium that is.
These are listed in the books you can buy from the celiac disease associations, or call the pharmaceutical manufacturer.
And remember, most people do not know what gluten is. So when I go to a restaurant or talk to a product manufacturer, I explain that gluten is the protein found is wheat, barley, rye and sometimes oats.
Like any new lifestyle, it takes practice. But then it becomes second nature.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Great info! I was once tested for celiac [biopsy of the bowel] and it came back negative. However, my LLMD ran a test and said I'd be wise to avoid gluten.
Which test is the best one for gluten?
Many years ago I found out I was allergic to wheat, but I do eat it sometimes. I WAS cheating alot, but have now repented!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Oh yes bigtime. Been down that road. I thought my whole problem was celiac. Went totally gluten free and did better but not well. Then found out it was lyme. Many lyme patients have new gluten intolerance. Is it celiac disease being activated by lyme? Is it gluten intolerance because of leaky gut? Many people on my support group have problems with gluten but have less as they get better. I still have problems if I eat gluten but the reaction is less after one and half years of treatment. The best website is Delphi Forums. If you are going to go gluten free then you need to go the whole hog because one molecule of gluten will trigger the autoimmune disease. You need to change out your pots, pans, wooden spoons, cutting boards, go by lists of gluten free foods. All that is on Delphi Forums. Trader Joes and Whole Foods have their own gluten free lists. The best test for celiac disease is the stool test by Dr. Fine. It's like testing for lyme, it is very inaccurate in most cases and alot of celiac's go by Dr. Fine's test. Email me anytime.
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Betty I pm you
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Wow, the calvary has arrived! I sent an SOS, and help came promptly galore. Way to go lymenet members! I/we appreciate your kindness & info.
Liz, Bea, Cindy, Mary, Jill, Tutu, Surg, and Treepatrol, thank YOU ALL for the wonderful info you typed below and PMd me.
I will print this off to start obsorbing little by little. I will learn from each of you so I do it RIGHT the 1st time, and don't have to correct any nasty habits I pick up when trying to change my diet.
It's mind boggling with all the things shown above. So I'll have to spend more time studying this stuff, and less time on this board! Thanks again all!
Has anyone suggested plant enzymes to you? I find this really helps with g i problems. Do you have bart?
If you do, bart really loves the g i, and can cause lots of secondary symptoms, like celiac. Rembember, lyme mimicks every disease.
I sometimes forget this myself.
Hope this helps you.
Sending healing light to you,
Gael
Posts: 121 | From philadelphia | Registered: Feb 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Betty, I am no expert about this or much else but somewhere in one of Shoemaker's books it said that some diagnosed with celiac did not necessarily have it..
Often it was some of the other things that others have mentioned.
My daughter has a slight gluten intolerance and when we did the diet, all of her symptoms were greatly improved.
Also when on the amylose diet, things were great. But the minute her endocrinologist said her scores did not really indicate problems, that is all she needed to hear. No more diet.
I think she was allowed many things that were made of corn instead of flour. She likes wraps and I remember we did a lot of them. And even tried to use flat bread for pizza.
There were many books available and the better health food stores or organic grocery stores should have tons of things to help.
Good luck..Any of this stuff is difficult. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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bettyg
Unregistered
posted
Gael and lymemomtooo,
thank you both for your comments & suggestions.
Co-infections, not that I know of or told of. Bowen checked for them late last fall; none found but confirmed my chronic lyme.
LLMD said I was allergic to GLUTEN, dairy, and eggwhites. Before I left her office, she gve me a handout on celiac disease; perhaps I've jumped the gun. But thought she meant I hve CELIAC too along w/other new dx from the beginning of my lyme tests.
I went to the library today checking out 2 recipe books, put my name on 2 more including a 2006 GLUTEN FREE FOR DUMMIES is on order.
Went to an organic store to see what they had on stock...whether it sounded good to eat and prices.
Been looking over all the info you mentioned; haven't been to the new web sites you mentioned BUT will plan on getting there.
Thanks to all for reaching out with helpful suggestions to this newbie with gluten allergies.
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