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"Super Sensitive" Celiacs.....


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#406 jerseyangel

 
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Posted 23 July 2009 - 06:15 AM

I get brave and eat something stupid, then get set back 3 weeks. Actually, my diet is very healthy, very little junk food.

I do eat desserts, but I make them myself out of "real" ingredients. Although sugar doesn't cause me any reactions, I am trying to cut down on it since I'd love to lose a few pounds. Other than that, I would say my diet is very healthy--lots of fresh fruits and veggies, lean meat, nuts, etc. It's that dang sugar..... B)

I am interested to hear other suggestions going beyond not eating gluten.

Welcome, sonear! :) Thanks for all the great ideas. Glad you were able to add eggs back in--baby steps ;) I tried the vinegar, but it was too acidic for my stomach--it burned for quite a while after. I used regular apple cider vinegar, though--is the filtered milder? I actually tried it because I read that it helped greatly with hot flashes, luckily those have gone away. :rolleyes:

Nothing has changed except for the dairy. Could it possibly be why I had insomnia?

I wouldn't be surprised at all. Gluten gives me insomnia, so it makes sense that the dairy protein could do the same in someone sensitive to it.

Celiac seems a great way to stay trim. Tra la la...

It works the opposite with me <_< :lol: I can be nauseous with D, and I still have an appetite.....nothing kills it. When I get glutened, I actually feel better after eating something :P

Holy crap! I meant to say "hello" everyone! Sorry!

I thought you were so happy to see us back that you put a swagger in your post! :D
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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#407 MaryJones2

 
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Posted 23 July 2009 - 08:03 AM

My adventurous soul gets me almost every time too! And why is it that you always get adventurous when you’re feeling great and then have to think about how great you felt for a week while you’re sick? Perhaps I will learn one of these days too. I have accepted that I just don't well with processed foods.

I was a teetotaler on dairy for 3 years and have recently added a little back in but I can't handle much at all. The stuff high in lactose still bothers me but I can do a tablespoon of cream cheese or a little Cabot cheddar. There is no substitute for cream cheese on my morning bagel so I won't complain about not being able to eat more dairy.


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#408 Jana315

 
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Posted 23 July 2009 - 08:29 AM

I've seen several mentions here of legume sensitivities....well, would that explain why I had stomach cramps, D & vomiting for about an hour apprx. 2 hours after I ate an entire (oopps) can of black beans the other night?? I know that was a stupid thing to do, but I was hungry....

Jana
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self-diagnosed gluten intolerant May 2009
positive dietary response
gluten free since 5/13/2009
nightshade free since 5/16/2009
DQ2, DQ8 negative, Kimball Genetics 7/2009

#409 oceangirl

 
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Posted 23 July 2009 - 08:48 AM

Jana,
I still don't eat legumes- especially soy. I think they were hard for me to digest always which is too bad 'cause I really like legumes. In fact, it's kind of unfair this whole food thing because I am the LEAST fussy eater in my house!

I still have some trouble with white potatoes, too...

lisa
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#410 darlindeb25

 
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Posted 23 July 2009 - 09:35 AM

I was the least picky too. There is not a vegetable I don't like. I used to love a bowl of tomato soup with grilled cheese...both out of the picture now.

Maybe we are the lucky ones...bad foods are out of our lives for good. I know we are the strongest people, what choice did we have? :P

Yeah Patti, I think the dairy was the problem too. It's too bad I didn't know years ago. I have had insomnia for so long, not even realizing I did..I just thought it was the way I was. I have been so disappointed in my CPAP, so many feel so much better so quickly, and mine was not changing a thing.
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#411 lizard00

 
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Posted 23 July 2009 - 10:22 AM

My adventurous soul gets me almost every time too! And why is it that you always get adventurous when you’re feeling great and then have to think about how great you felt for a week while you’re sick?


And then you are angry for the week after, swearing you'll NEVER do it again... LOL :lol:

Patti, about the apple cider vinegar... ironically, when I get glutened, I drink some with water with just about every meal. It seems to calm my stomach for some reason; strange, I know. I stick with Bragg's, too.
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Be yourself, everyone else is taken.
Oscar Wilde

Gluten free November 2007
IgA Deficient, Neg Bloodwork, Double DQ2 Positive
Dietary and Genetic Diagnosis June 2, 2008
Soy free Jan 09

#412 jerseyangel

 
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Posted 23 July 2009 - 12:16 PM

I've seen several mentions here of legume sensitivities....well, would that explain why I had stomach cramps, D & vomiting for about an hour apprx. 2 hours after I ate an entire (oopps) can of black beans the other night?? I know that was a stupid thing to do, but I was hungry....

Jana

Hi Jana,

I get the worst reaction from legumes--even worse than gluten. I literally feel poisoned--I get terrible nausea and stomach pain that starts that night and goes into at least the next day. I don't tend to vomit, even when nauseous like that, although it's bad enough so that I wish I could--if you know what I mean.

I love legumes--all of them....I miss beans and especially chick peas on my salad....I can't even tolerate string beans :angry: And peas...

I'm actually scared of 'em :unsure:
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#413 jerseyangel

 
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Posted 23 July 2009 - 12:25 PM

And why is it that you always get adventurous when you’re feeling great and then have to think about how great you felt for a week while you’re sick?

Ain't that the truth! But ya know--we are strong, and that's what makes us want to "get back on the horse" so to speak after we feel well again. :D Hope springs eternal. :lol:

I have had insomnia for so long, not even realizing I did..I just thought it was the way I was.

It's sad, the things that we lived with before realizing what the real cause was, thinking that it was our normal :(

Liz--Interesting about the vinegar. Maybe it's a stomach acid thing, and I already have too much? I know so many swear by it.....
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#414 darlindeb25

 
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Posted 23 July 2009 - 05:17 PM

It's sad, the things that we lived with before realizing what the real cause was, thinking that it was our normal


How true it is. So many things I used to think was just me. So many times a doctor would nearly convince me it was all in my head. I took the meds they said to try, which didn't work...on and on over the years.

Now, I think I will never heal correctly. I am having more trouble with my memory all the time. I try to type a word, and the opposite comes out, like didn't when I want did. Then letters twisted around, I get so frustrated. I work very hard at getting myself healthy, vitamins and such. So often I feel like I am just spinning my wheels. Now I am finally sleeping, yet I am so tired all the time. Maybe I am just playing catch-up, but still, it's all so frustrating.
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#415 oceangirl

 
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Posted 24 July 2009 - 05:28 AM

Deb,
That stinks- I hope you see more progress soon. I have to be thankful for all the time I feel really well, but it is a bit of a drag to fear food and think of it as "the enemy". I have my moments of wishing I could digest food like those all around me. Sigh... oh well..... and then making people understand why you are so paranoid without them thinking you're some kind of crazed hypochondriac.

Oh well, at least the weather's nice here in the Northeast...(Grrrrrrrrrr.......) Anyone seen the sun where you are?.......


take care,
lisa
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#416 jerseyangel

 
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Posted 24 July 2009 - 06:06 AM

Anyone seen the sun where you are?.......

A little too much for my taste, here in Texas..... <_<

It's been at least 95 every day since the beginning of June, with very little rain. (wouldn't you know that our first year here, they would have the second hottest June on record!) Many days in July over 100 B) I'm still waiting for my blood to thin :lol:
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#417 oceangirl

 
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Posted 24 July 2009 - 06:25 AM

Patti,
That does sound like a bit much but I think I would trade right now- we're heavily into monsoon season as is so normal for July in Maine... (???????!) And it's COLD! I've had the heat on earlier in July- that's just pathetic!


Anyway, didn't mean to hijack the thread into the weather channel- hope everyone else is having a lovely summer!

lisa
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#418 jerseyangel

 
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Posted 24 July 2009 - 06:38 AM

Wow Lisa--the heat on in July! :o Sounds like a crazy summer all over the place!

Actually, I was recently thinking that back when I was sick, I never would have been able to tolerate this heat. It would have been much harder for me--not that I do well with heat generally but I'm a bit surprised that it doesn't make me sick like a normal northeastern summer used to.
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#419 Korwyn

 
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Posted 24 July 2009 - 07:41 AM

How true it is. So many things I used to think was just me. So many times a doctor would nearly convince me it was all in my head. I took the meds they said to try, which didn't work...on and on over the years.

Now, I think I will never heal correctly. I am having more trouble with my memory all the time. I try to type a word, and the opposite comes out, like didn't when I want did. Then letters twisted around, I get so frustrated. I work very hard at getting myself healthy, vitamins and such. So often I feel like I am just spinning my wheels. Now I am finally sleeping, yet I am so tired all the time. Maybe I am just playing catch-up, but still, it's all so frustrating.


That is wierd. I have been having more issues typing and with my memory since I went gluten-free. I'm wondering if I'm dealing with a nutrient deficiency caused by the radical change in my diet. It it very frustrating and frankly I'm more than a little worried and scared sometimes by it. :(
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Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

#420 darlindeb25

 
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Posted 24 July 2009 - 05:37 PM

I'm wondering if I'm dealing with a nutrient deficiency caused by the radical change in my diet. It it very frustrating and frankly I'm more than a little worried and scared sometimes by it.


I know what you mean. It upsets me too, it's so frustrating. People joke with me and say it's just our age, it happens, but I feel this is different. I too wonder about a vitamin I am missing. The docs check my vitamin levels, and tell me they are find, in the normal range. Yet, most are just barely in the range, like my ferritin at 22, with 20 being anemic. My Vit D is only 26, so I have been taking it for months now. We know my Vit B12 was very low, causing neuropathy...I now take 5000mcg daily of B12, and finally, my neuropathy showed a slight improvement.

Vitamins are so important. When you are as intolerant as most of us are, I'm sure we can't be getting our needed vitamins from food.

I just keep shipping away at this all.
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!




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