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» LymeNet Flash » Questions and Discussion » Medical Questions » update anyone else with Celiac's Disease?

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Author Topic: update anyone else with Celiac's Disease?
lakes592
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Hi,
Just wanted to let you know that I went to see Dr. M in ME he is great! I have been to the ER twice in the last month and seen by including him, 5 doctors and he was the only one to figure out what has been going on with me. On top of everything I have Celiac's disease. I just found out that it runs in my family. I feel confident that he will be able to help me regain my health.
Thanks for everything.

Take Care,
Ann

[ 11-08-2009, 06:28 PM: Message edited by: lakes592 ]

--------------------
If you keep doing nothing...nothing changes!

www.underourskin.com

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sixgoofykids
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Thanks for the update! I was gluten free due to a gluten intolerance not celiac disease for two years, it's not so bad once you get the hang on it. It takes time though to figure out what has gluten and what does not. Hang in there and be patient with it.

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sixgoofykids.blogspot.com

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lakes592
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Hi,
Thanks six yes seems easier now then in the past. Betty Crocker has a baking line and Rice Chex and some other regular cereals now say gluten free. Shouldn't be too bad to stick to. Just so excited to have hope that I will get better!

Take Care,
Ann

--------------------
If you keep doing nothing...nothing changes!

www.underourskin.com

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Keebler
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Just watch the glycemic index and ingredients on the label.

Whole non-gluten grains are buckwheat (really a legume), wild rice (really a rice), millet, regular and red quinoa ("keen-wa"), amaranth and many varieties of brown, red and black rice.

I'm sure your doctor gave you some sites to study. Be sure to check out www.celiac.com and see their page: Hidden Sources of Gluten, too.

This does get much easier. I've been gluten free for 15 years and I never even have to buy anything processed or packaged. I get it all from the bulk section of my market.
-

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Lymetoo
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Finding that out is major. Going gluten free eliminated some of my pain issues!

Stick to the diet .. it is so worth it. Be sure to go to the site keebler gave you. It's really good.

Know what happens if you don't follow the diet.. there are long lasting ramifications. (knowing will help you stay on the diet)

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--Lymetutu--
Opinions, not medical advice!

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joalo
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I've been eating gluten-free for almost four years. Since stopping all gluten my brain fog has gone away and I'm no longer having stomach issues. [Cool]

I can't cheat at all because even a crumb of gluten puts me on the bathroom floor for two days. [dizzy]

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Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006.

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disturbedme
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I found out at least six or so months ago that I am gluten intolerant.

Was very surprised when I found out!

I've been trying to go gluten free... and I thought I was gluten free for a few months but come to find out I've been getting accidental cross contamination and eating products that I swear said they were gluten free but weren't.

So I am trying to start over and I'm hoping as soon as I go 100% gluten free I will get some relief from some of the 'lyme' symptoms.

Unlike most people with celiac or gluten intolerance, I don't have bowel issues. (knock on wood)

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

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Keebler
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Many with celiac don't have GI issues, but more neurological effects. That is only recently coming out in research. Gluten also can affect the liver of those with celiac who consume gluten.
-

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Lymetoo
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Disturbed.. Be sure to go to the site and print off the list of OK and not OK foods and ingredients.

It's on the left side of the screen last time I checked.

--------------------
--Lymetutu--
Opinions, not medical advice!

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lakes592
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So definetly not alone here! What do you mean are you referring to Deli CC or is there some particular products that may have CC? Trying to make sure I dont do that so any advice is appreciated. Also, did anyone else have tooth/mouth pain with it? Mine has been horrible going to dentist just to have everything checked!


Thanks,
Ann

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If you keep doing nothing...nothing changes!

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disturbedme
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Yeah, I have a lot of neurological/cognitive issues that might -- well hopefully will -- get better once I can get a hold of this gluten free diet!

Unfortunately, most of our pans are also teflon, which are not gluten free friendly and I've probably been getting cross contamination that way that I had no idea about at first.

Going to have to get some stainless steel pans.

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

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Lymetoo
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quote:
Originally posted by Keebler:
[QB] -
Many with celiac don't have GI issues, but more neurological effects. That is only recently coming out in research. Gluten also can affect the liver of those with celiac who consume gluten.
-

as well as Hashimoto's Thyroditis and diabetes

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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quote:
Originally posted by lakes592:
[QB] So definetly not alone here! What do you mean are you referring to Deli CC or is there some particular products that may have CC?

???Who said that?

When they cut deli foods they often cut those with gluten and those foods without gluten. Easy to cross contaminate.

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Opinions, not medical advice!

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lakes592
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Disturbed me wrote: I've been trying to go gluten free... and I thought I was gluten free for a few months but come to find out I've been getting accidental cross contamination and eating products that I swear said they were gluten free but weren't.

Yeah, I have a lot of neurological/cognitive issues that might -- well hopefully will -- get better once I can get a hold of this gluten free diet!

Unfortunately, most of our pans are also teflon, which are not gluten free friendly and I've probably been getting cross contamination that way that I had no idea about at first.

Very interesting and thanks for sharing as anyone who has read my recent posts knows how badly I have been effected by this. Lots of neuro/cognitive as well! Thanks for sharing about the pans I would have had no idea about the Teflon.

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www.underourskin.com

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Lymetoo
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OH.. I didn't see anything about a Deli and couldn't figure out where it came from. It was from YOU!! [Wink]

Yes, I think you will notice improvement in the neurological area.

I have a teflon frying pan, but I don't have flour in the house .. so no CC. Hubby eats gluten free at home except for his bread.

also .. get a new toaster for your breads

--------------------
--Lymetutu--
Opinions, not medical advice!

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Shosty
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We improved after eliminating dairy/caseine from our diets as well.

I actually react now to soy, tree nuts, citrus, gluten, dairy, corn, seeds, tropical oils, bananas, avocados and virtually anything that I eat frequently, so I rotate foods.

If your celiac tests are positive, that is different of course, and even the most tiny amount needs to be avoided, but for those who are intolerant, tiny amounts are okay after a few months.

In the summer, I start reacting to plums and nectarines after a few weeks. I stop. The the next summer, I can eat them again. This past summer I rotated them and they stayed okay.

Bob's Red Mill makes a great baking mix, using rice, garbanzo bean and maybe potato flour. It already has the baking powder and xanthum gum in it, so all you have to do is add some oil (2 Tbs. for 1 cup of flour), and egg, and whatever soft of liquid ingredient gets it to a good consistency. I use mashed banana, or canned pumpkin, or sweet potato or applesauce, also vanilla. One of us has diabetes so we don't add sugar or honey. The we add nuts, cranraisins, raisins, blueberries, whatever. Takes 5 minutes to make, 10 minutes to bake.

Eat rice cakes, rice cereal (brown or white), rice bread and tortillas (sold frozen in many stores), rice of course...lots of rice!

Watch out for anything with malt or maltodextrin and sometimes even "natural flavors." The celiac. com site has a list.

Dealing with all this cleared up neuro symptoms for two people in our family, more than antibiotics for Lyme. My paresthesias are now 80% better unless I am in the sun.

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disturbedme
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quote:
also .. get a new toaster for your breads
I just don't use the toaster anymore. I've learned to microwave my gluten free waffles or whatever. LOL. My gluten free bread I just don't toast.

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
   

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