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jerseyangel

"Super Sensitive" Celiacs.....

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Wow, all of this sounds familiar. I wonder what people are doing beyond avoiding foods to address their unwellness. I have to avoid gluten, dairy, soy, corn and sugar cane. Just recently I've been able to eat eggs for the first time in years which is great!

Some things outside of dietary changes that have really, really helped me with feeling better:

1) B-12 supplements (and if you need B-12, you probably need all the B's, but be sure to take at least 1000 mcg's per day of methyl-B-12).

2) amino acids taken without food at separate times of day : 500-800 mg. l-tyrosine for anxiety, 5-HTP 200 mg a.m. and 200 m.g. p.m. for depression, L-glutamine and NAC (taken together for detoxing)

2) apple cider vinegar (unfiltered, unpasteurized only), 1-2 T. per day. The best tasting I've found is Bragg's. My 4 year old son LOVES it even (and it seems to help his behavior a lot--he's got celiac too).

3) avoiding micro-gluten products like white vinegar (and anything made with it), oaked wines (oak barrels are sealed with wheat paste), alcohol in the form of tinctures, vanilla, etc. Oh, also, I have researched all of my prescriptions and supplements to make sure there are no sources of gluten, dairy, soy, corn or sugar. Note that almost all vit. C. is made from corn. For a good source of vitamin C made from tapioca: http://www.autismcoach.com/Vitamin%20C%20-%20Corn-Free.htm

4) getting lots of sleep (the B-12 helps me sleep better too)

5) marshmallow root tea (made overnight with cold water, kept in the fridge therafter), 4-8 oz. per day to heal the stomach

Recently I went off the vinegar. I was tired of it and starting to think the other things were enough. I started feeling sick again even though I know I wasn't eating gluten.

My naturopath says it takes a lot of years to damage your system to the point where you will feel sick all the time. She says that your intestinal walls are muscles designed to be slick and inpenetrable. Whether or not you test positive for problems with your stomach lining, you could have inflammation of the stomach lining which allows micro- food particles to slip through the stomach walls into your bloodstream, creating the food sensitivities. Give your stomach a year or so to heal, and you will be able to tolerate at least some of those foods again. The key is allowing your stomach lining to heal.

Hope this helps! I am interested to hear other suggestions going beyond not eating gluten.

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4) getting lots of sleep (the B-12 helps me sleep better too)

Because of my years of eating gluten and not knowing it was what was making me sick, I have some other issues to deal with, one being sensory neuropathy. I take B12, have for nearly 5 years now, am taking Jarrow Methylcobalamin B12, 5000mcg. I still had insomnia, along with sleep apnea.

2 weeks ago tomorrow, I stopped using dairy, and started using coconut milk. That Sat night, I slept all night. One night, I even slept 7 hours, which is a record for me, probably a record I havent seen in 30 years or more. Last night I slept nearly 7 hours, 15 mins short of it. In that 2 weeks time, I have not had one night of insomnia.

Nothing has changed except for the dairy. Could it possibly be why I had insomnia? I'm guessing it could, we all know intolerance's do weird things to us. The only problem now is, even with sleeping, I am exhausted during the day, wanting a nap before noon.


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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Hell everyone,

Glad to see the Old Super Sensitives back in action. I, like Patti, have the experience of "getting brave" and putting a little "swagger" into my eating (that would be like actually taking a bite of something made at someone else's house like my sister's who is very "gluten-savvy" but, alas... there's still lots o' gluten in her environment...) and then getting nailed. I felt my reaction times were lessening as well until this past week when I have been hit SO hard and it does NOT seem to be abating. I'm back to ONLY trusted foods and not much food at that.

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

Good health to all!

lisa

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

lisa

:lol::lol::lol:


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

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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


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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My adventurous soul gets me almost every time too! And why is it that you always get adventurous when you


---------------------------------

MP - celiac for 10 years

 

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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


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

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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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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.


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


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

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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:


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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And why is it that you always get adventurous when you

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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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.


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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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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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:


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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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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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.


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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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. :(


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! :(

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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.


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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My last bloodwork for vitamins came out "fine" too but I don't buy it. I have such a hard time tolerating suppliments--I've been thinking about trying a Kirkman Labs multivitamin. The only one I take now is Caltrate 600 with D (2 a day) --by some miracle, I can tolerate it.


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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My last bloodwork for vitamins came out "fine" too but I don't buy it. I have such a hard time tolerating suppliments--I've been thinking about trying a Kirkman Labs multivitamin. The only one I take now is Caltrate 600 with D (2 a day) --by some miracle, I can tolerate it.

Lisa and Patti,

This, you might find of interest:

http://celiacdisease.about.com/od/medicalg...SideEffects.htm

Patients with newly diagnosed celiac disease often have nutrient deficiencies. Complicating that problem, gluten-free products are often low in B vitamins, calcium, vitamin D, iron, zinc, magnesium, and fiber. Few if any gluten-free products are enriched or fortified with these nutrients. When Swedish researchers studied adult celiac patients who had been gluten-free for 10 years, half of the patients had vitamin deficiencies, including low levels of vitamin B-6 or folate, or both, and high levels of homocysteine (a risk factor for heart attacks, vascular disease, and strokes). Before the study, all the patients had biopsies to prove their intestines were healed and healthy, so these vitamin deficiencies could not be explained by malabsorption. Italian researchers have found similar deficiencies in gluten-free adolescents. When it's time for an annual check-up, celiac patients should ask their doctor whether their vitamin status needs to be measured, and whether they should be taking folic acid and vitamin supplements.

And, I did not know what homocysteine was, so here is a definition:

http://www.americanheart.org/presenter.jhtml?identifier=535


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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My last bloodwork for vitamins came out "fine" too but I don't buy it. I have such a hard time tolerating suppliments--I've been thinking about trying a Kirkman Labs multivitamin. The only one I take now is Caltrate 600 with D (2 a day) --by some miracle, I can tolerate it.

I havent tried Kirkman. I have used Jarrow Vitamins, and Country Life, and been ok with them. I use Nature Made Woman +50 Daily...also have used Natrol with no problems.

Normal Ranges are set for normal, everyday life, something we do not really have. I have to wonder if "normal levels" are adaquate for us. I definitely know the "normal range" for B12 is very outdated. Most doctors feel a level of 200 is fine, I would not beable to walk if my level was at 200. Taking 5000mcg daily, my level is 1015, which isn't high at all.


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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Lisa--thanks! Those were very interesting. I think I may be the poster child for the first article :D


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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