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Old 10-14-2005, 05:27 AM   #1
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rjbucknell HB User
new CD with questions

I was diagnosed with CD on monday. I have been gluten free since then. I feel like ******. I am foggy, tired, nauseous. Is this normal? Am I getting worse before I get better? This makes no sense to me at all.

Also, is wheat grass off limits? I drink a green drink that has wheat grass in it, and I can't find anywhere that it is a no-no. I haven't had any since monday morning, but would like to resume, if its safe.

Another question. I haven't had a biopsy but my labs are
tissue transglutaminase>250 (<20)
gliadin abs-iga 233.8 (<25)

I also have graves disease and type1 diabetes (Dx 1.5 y/a)

thanks in advance.

 
Old 10-14-2005, 09:02 AM   #2
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rheanna HB Userrheanna HB User
Re: new CD with questions

Quote:
Originally Posted by rjbucknell
I was diagnosed with CD on monday. I have been gluten free since then. I feel like ******. I am foggy, tired, nauseous. Is this normal? Am I getting worse before I get better? This makes no sense to me at all.

Also, is wheat grass off limits? I drink a green drink that has wheat grass in it, and I can't find anywhere that it is a no-no. I haven't had any since monday morning, but would like to resume, if its safe.

Another question. I haven't had a biopsy but my labs are
tissue transglutaminase>250 (<20)
gliadin abs-iga 233.8 (<25)

I also have graves disease and type1 diabetes (Dx 1.5 y/a)

thanks in advance.
rjbucknell,

Welcome to the world of gluten-free! I can't give you any info on the numbers from your tests, because mine was self-diagnosed. But I have had lots of experience eating gluten free.

Wheat grass is a no-no because it can contain seeds - which is where most of the gluten is.

Initial thoughts on why you may be feeling lowsy at the moment:

1) If you were feeling lowsy before you were diagnosed, it may take a while for your body to heal. Things should start improving as your intestines heal.

2) If your diet is drastically different now, you body may need time to adjust. Are you finding other gluten-free carbohydrates to replace the ones you were used to?

3) Are you going through caffeine withdrawel -- I get a nasty headache and feel rotten if I don't have my daily ration of black tea.

4) You may not actually be eating as gluten free as you think. There is gluten hidden in lots of things. Already powdered spices often contain wheat to make them pour better. I have a little coffee grinder just for spices. Barley is in lots of things -- beer, some rice beverages, malt and malto dextrin in cornflakes, etc. Contamination between food bins in healthfood stores. Wheat-bread crumbs in butter, jams, toaster, counter, etc.

Please post more on what your diet is like at the moment, and maybe I or someone else can give you some feedback.

There are websites that have excellent detailed lists of foods that are gluten-free and foods to avoid. I can't mention my favorite because it's a commercial website, but if you enter celiac disease into your search engine you will come up with a long list of sites that can give you information.

I suspect that all three diseases -- graves, celiac and diabetes -- are separate, and just going on a gluten-free diet won't necessarily make any of the other problems better. But I'm not a doctor. One idea that I've had for a while is that if something is causing too much of an imbalance in the body, then everything else goes out of balance as well. So getting control of your diet is one step in allowing your body to become more in balance in the other areas. I don't know anything about graves disease. But I have read that simply going gluten-free won't make the diabetes go away.

I'm rambling as usual.

Please ask more questions.

--Rheanna

 
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Old 10-14-2005, 09:43 AM   #3
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Re: new CD with questions

I am almost 100% sure that I am gluten free, right down to the lipstick! I have bought all gluten free products to replace any that I can't live without (bread, cookies, cereal) I am positive these are gf.

My diet has consisted of gf products, rice, cream of rice, gluten free corn chips, salads, cooked veggies, tofu and beans, and an egg yesterday.

I did buy ground coffee that is mostly caf-free. I have been weaning for a few months, though.

I smoke.....do cigs have gluten? I smoke the american spirit organic stuff. It says no additives!?!

I won't drink the green drink. Bummer, I really feel good when using it. Maybe that is what is wrong with me, living w/o all that healthy stuff. I don't know.

Going gf isn't that horrible for me since I am basically a whole foods vegetarian (with a wicked carb problem). I am eating everything I always eat without the gluten laden baked goods that I was bingeing on for the last few months.

Do you have an opinion on my #'s? Is it possible to have these and not be CD?

Thank you for your help
r

 
Old 10-14-2005, 09:24 PM   #4
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Losec20mg HB User
Re: new CD with questions

Hi there and, welcome to a wonderful world. .. anyhow if you where just diagnosed then you should be incredibley strict about everything that enters in your mouth.. medications, tooth paste, gum, candy.. etc.. everything has gluten in it. So to be on the safe side.. this is what you should eat to start you off.. if you follow what i say you will heal very quickly.

Fruits
veggies
GF bread
GF cereals
GF snacks
Rice
Plain fresh meat
Rice Pasta GF
home made sauce
organic plain yogurt
plain simple cheese
extra virgin olive oil
salt
organic milk
Rice milk
************************

thats it for now

stay away form cookies cakes..etc for now..

sugar for celiacs is not to good.

voila.

oh I almost forgot, drink water 2 litres a day.

Last edited by Losec20mg; 10-14-2005 at 09:25 PM.

 
Old 10-14-2005, 11:47 PM   #5
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rheanna HB Userrheanna HB User
Re: new CD with questions

rjbucknell,

It sounds like you've done a great job of educating yourself on eating gluten-free.

As for the test results, I can't find anywhere (in either English or the few German sites I know of) that say just what the numbers mean. They mention specificity and sensitivity (in percentiles), but I haven't a clue what that means.

But all the sites say that a definitive test is the biopsy. You receive a mild sedative (like valium), and they stick a tube down your throat to your upper intestines to look at whether there is any damage to the little villi, which are the little hair-like cells that absorb nutrition. This visual test is supposed to be more definitive than the blood tests, but it only works if you haven't already started a gluten-free diet, because the villi start healing themselves when they are not assaulted by the gluten.

One of the reasons celiac disease is so frequently not suspected is that the symptoms are so diverse -- one major component of the disease is nutritional deficiency due to the damaged intestinal villi. Your symptoms depend on which nutrients are not being absorbed -- that is, which portions of your small intestine are damaged.

How closely are you controlling your diabetes? One thing to consider is that as your villi heal and your ability to absorb certain nutrients improves, your insulin requirements may change, or you may need to alter your carbo intake.

Is graves disease affected by nutrition? Assuming that you do indeed have celiac (your doctors said the test results were positive?) then you actually have three health problems that need to come into some sort of balance. Keep working on making your diet as healthy as possible and controlling your blood sugar numbers, and getting some regular exercise. The quick description of graves I read said that it's an autoimmune disease that often includes pain. You'll need to see what you can do to work around that for exercise, because exercise is an important part of bringing the body into balance (she says sitting on her rear end for hours in front of the computer ).

As long as your coffee is just plain roasted coffee (no flavorings, not instant), then it should be ok. I don't think the caffeine extraction processes use anything that would cause problems. Ciggies are not good for anyone, but you knew that! But at least the american spirit ones have LOTS fewer additives than the major brands.

Wish I could help you with the numbers. Maybe someone else can chime in here.

--Rheanna

 
Old 10-15-2005, 04:46 AM   #6
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rheanna HB Userrheanna HB User
Re: new CD with questions

rjbucknell,

Another thought that occurs to me is the possibility that in your wonderful efforts to improve your diet, you might have introduced something that you didn't know you were allergic to. Or, there may have been something IN ADDITION to the gluten that is still giving you problems.

--Rheanna

 
Old 10-15-2005, 08:27 AM   #7
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Losec20mg HB User
Re: new CD with questions

like maybe Lactose

 
Old 10-18-2005, 05:08 PM   #8
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rjbucknell HB User
Re: new CD with questions

Thanks!
I am noticing that everytime I eat any dairy my belly gurgles. I think I will go dairy free for a while and see what happens. I am less exhausted this week, which is wonderful.
I am surprised to see all the food that has gluten! Salad dressings, marinades, sauces. I resorted to making my own tonight. I had been relying on Braggs aminos to flavor everything-but that gets old fast.
Another food that set me off this weekend was eggs. Is this normal? I think my body is feeling just good enough to allow me to tell when I am feeling crappy
I found some really yummy vegetarian gluten free recipes on the eat to live website. I was thrilled! Really good sauces and soups.
I had a near breakdown at the grocery today. My daughter wanted donuts----ME TOO!!!!! It was hard, but I made it through.
Another thing that could be wrong with me is that most of my supplememnts have some no-no in them, so I have been off most vitamins and supplements for 10 days now. I really need to find a good gluten-free vegetarian multivitamin. Any suggestions?
Thanks for your replies, and all your help.
r

 
Old 10-18-2005, 05:24 PM   #9
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Losec20mg HB User
Re: new CD with questions

it depends where your from.. Like the centrum kind are gluten free/lactose free.. also the jamieson kind..and, SISU.. etc, there are lots of multivitamines that are allergy free.. Dont worry you will adapt..OHHH DONUTS..NOOOOOOOOOOOOOOOOO..

 
Old 10-18-2005, 08:04 PM   #10
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Jess75 HB UserJess75 HB User
Re: new CD with questions

Quote:
Originally Posted by Losec20mg
it depends where your from.. Like the centrum kind are gluten free/lactose free.. also the jamieson kind..and, SISU.. etc, there are lots of multivitamines that are allergy free.. Dont worry you will adapt..OHHH DONUTS..NOOOOOOOOOOOOOOOOO..
LOL, HECK no! I'm sure they have gf donuts though!

 
Old 10-18-2005, 09:22 PM   #11
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Losec20mg HB User
Re: new CD with questions

yes they do.. Jessica..lol but, still..ya know. I eat penut butter cookies.

 
Old 10-20-2005, 02:52 AM   #12
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rjbucknell HB User
Re: new CD with questions

The holistic doc who thought to run the tests for CD sent me a list of foods compiled by Wild Oats of GF products in their stores. It is aisle by aisle. There are vitamins on the list. And yummy baked goods-from the bakery! And I discovered these amazing fruit bars called LARABAR! GF, veg, raw, org. These have come in handy with my diabetes. I have hit so many lows with all this diet change.
Life is becoming less boring in the food department. I was so restrictive for the first week, now I have so many choices. I just wish the GF products were similar in price. I hate to cook! Steamed rice and veggies is about as far as I like to go in the kitchen. At least GF bread isn't horrible.
Just want to say that I really appreciate you all being here. No one I know is CD and it is kinda lonely.
r

 
Old 10-20-2005, 07:34 AM   #13
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rheanna HB Userrheanna HB User
Re: new CD with questions

Quote:
Originally Posted by rjbucknell
The holistic doc who thought to run the tests for CD sent me a list of foods compiled by Wild Oats of GF products in their stores. It is aisle by aisle. There are vitamins on the list. And yummy baked goods-from the bakery! And I discovered these amazing fruit bars called LARABAR! GF, veg, raw, org. These have come in handy with my diabetes. I have hit so many lows with all this diet change.
Life is becoming less boring in the food department. I was so restrictive for the first week, now I have so many choices. I just wish the GF products were similar in price. I hate to cook! Steamed rice and veggies is about as far as I like to go in the kitchen. At least GF bread isn't horrible.
Just want to say that I really appreciate you all being here. No one I know is CD and it is kinda lonely.
r
rjbucknell,

Keep in mind that there wouldn't be so many GF products on the shelves if there weren't a lot of people buying them. If you really were the only person in your town who needed to eat this way, you'd be on your own to learn how to cook from scratch.

--Rheanna

 
Old 10-20-2005, 04:07 PM   #14
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rjbucknell HB User
Re: new CD with questions



Thanks for the wake-up call. Wild Oats actually has a monthly (or more frequent) Celiac night! I am looking forward to attending. I missed this months and don't have next months calendar yet. I will let you all know how cool it is!
r

 
Old 10-20-2005, 09:16 PM   #15
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Join Date: May 2004
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Jess75 HB UserJess75 HB User
Re: new CD with questions

Quote:
Originally Posted by rjbucknell
The holistic doc who thought to run the tests for CD sent me a list of foods compiled by Wild Oats of GF products in their stores. It is aisle by aisle. There are vitamins on the list. And yummy baked goods-from the bakery! And I discovered these amazing fruit bars called LARABAR! GF, veg, raw, org. These have come in handy with my diabetes. I have hit so many lows with all this diet change.
Life is becoming less boring in the food department. I was so restrictive for the first week, now I have so many choices. I just wish the GF products were similar in price. I hate to cook! Steamed rice and veggies is about as far as I like to go in the kitchen. At least GF bread isn't horrible.
Just want to say that I really appreciate you all being here. No one I know is CD and it is kinda lonely.
r
Do they sell those Larbars at whole foods? Losec?

 
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