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"Super Sensitive" Celiacs.....


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#421 jerseyangel

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Posted 24 July 2009 - 05:46 PM

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.
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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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#422 Lisa

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Posted 24 July 2009 - 05:54 PM

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...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.americanh...?identifier=535
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Lisa

Gluten Free - August 15, 2004

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#423 darlindeb25

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Posted 24 July 2009 - 06:17 PM

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.
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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!

#424 jerseyangel

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Posted 24 July 2009 - 06:19 PM

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

#425 dilettantesteph

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Posted 25 July 2009 - 02:41 PM

Can anyone who is super sensitive tolerate Eden Organic's Tamari Soy Sauce?
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#426 darlindeb25

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Posted 25 July 2009 - 03:29 PM

Can anyone who is super sensitive tolerate Eden Organic's Tamari Soy Sauce?


I can't, I can't do soy!!! :lol:

Just had to answer Steph!!!
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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!

#427 oceangirl

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Posted 26 July 2009 - 07:33 AM

Ugh. I could use a little "boost"- I've recently been mysteriously glutened three times in a row- last night after trying a new white wine at a restaurant. I shouldn't complain because this is after a year or more of feeling MOSTLY pretty damn good... Do you guys still find it is often a mystery? There is no question when it's gluten or something that behaves exactly like it. Could it be I can't even be in an environment where I might breathe it in? (Like my car with the windows open while my niece and nephew and son munch gluten in the backseat?)

I guess I just need my chin chucked 'cause I'm ready to...ggrrrr.....


thanks,
lisa...at least the weather's still nice here in Maine.....scowl.
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#428 darlindeb25

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Posted 26 July 2009 - 11:36 AM

I am super sensitive, and really don't have trouble being around others with gluten, I just keep my distance. I rarely take chances, even in the grocery stores, I make a wide path around the bakeries. Wine alone makes me sick, I can't drink any alcohol anymore.

It's good you have done so well so far...keep it up.
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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!

#429 MaryJones2

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Posted 29 August 2009 - 01:32 PM

I'm looking for polenta? Does anyone use it and what brand? I don't care for the stuff in the tube. The only ground corn product I've found that doesn't make me feel a little funky is Maseca but it's more of a corn flour and not course enough for polenta.
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#430 gabby

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Posted 31 August 2009 - 05:29 AM

Hi,
I bought my own countertop grain milling machine and now I make my own polenta, rice flour, bean flours, etc. For polenta I just put popcorn kernels through the machine and grind it at a course setting (I actually like to use Orville Redenbacher popcorn...but any popcorn will do). I don't live in the US...so I am not sure where you can buy these things. I looked them up on the internet and found this link to a place that has pictures and descriptions of different kinds of mills. They are a bit pricey...but so worth it. I have one that looks just like the Wolfgang model. And as for making polenta: grind the popcorn kernels. Then add to boiling water (about 1 cup ground corn for 2 cups water). Turn down the heat to a simmer and stir, stir, stir for about 20 minutes. Add a pinch of salt and some olive oil. If you can have dairy, try with butter and cheese, or add some cream to the final stirring. You can also do the same with rice flour. Yum!



http://www.canningpa...rain-mills.html

I'm looking for polenta? Does anyone use it and what brand? I don't care for the stuff in the tube. The only ground corn product I've found that doesn't make me feel a little funky is Maseca but it's more of a corn flour and not course enough for polenta.


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#431 MaryJones2

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Posted 31 August 2009 - 07:50 AM

Thanks gabby! I hadn't thought about using a grain mill. I have one for my Kitchen Aid and have never used it. I think I'll dust it off.
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#432 Guest_missmyrtle_*

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Posted 03 September 2009 - 03:53 AM

My day:
I offered to take my friend to the dental hospital as she is terrified of the whole thing. Having just recovered from dinner guest splashing soy sauce around in a non attentive moment I was feeling pretty gorgeously normal until......the only cafe's around were fast food joints and a flash looking Thai so I went with the latter and three waitresses listened and nodded and smiled and assured me that yes, steamed vegetables and steamed fish were a sure thing and I really stressed the point in a polite way.

So it is now and I have cried for hours and hurt badly as you would not fathom what was at the bottom of my steamed, "NO SAUCE AT ALL", veggies? Yep, battered fish and oyster sauce.

So I took an hour before feeling well enough to go to the counter. The waitress started crying and said they were so sorry and not to pay. I started crying too and my belly was swelling by this point so I got into a huge lecture and website info was exchanged and I hope they learn but doubt it. I might as well have eaten a loaf of white bread and feel so very sick and am a very sensitive celiac to start with so who knows how long the pain and swelling will last and I do sometimes feel that being a hermit and never taking the smallest risk is the only way. I HATE THIS pain so much and its awful to leave the house as one person and then turn into a monster a few hours later.
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#433 dilettantesteph

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Posted 09 September 2009 - 04:20 AM

I'm so sorry. I don't dare eat at restaurants any more. You make me feel less insane.
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#434 labbott

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Posted 15 September 2009 - 12:33 PM

So I am super sensitive and in fact have severe neurological symptoms if I inhale gluten. I know some of you have mentioned you have had similar reactions from inhaled gluten and I need to know does it get better after you heal? Will I always react so severely and to nothing at all? I find myself in a position that I need to go back to work but I really can't be in an office setting so I am wondering how I could get a potential employer to make accommodations for me to be a virtual employee and what I should say about whether this is permanent or something that might get better over time?

I was diagnosed 1 1/2 years ago and finally following an even stricter version of SCD I am beginning to feel good again and finally able to function. But my world is still pretty limited because anywhere I go in public I have to be careful of gluten and I first get a blinding headache that tells me I am being exposed and must leave immediately. If I leave the area my head begins to clear but if I linger too long I become very ill.

Before anyone replies that inhaling gluten can't possibly cause these symptoms please restrain yourself. Not believing my reaction does not add any value to my question or my situation. And I am glad for those of you who can't imagine this reaction because it means you don't have this kind of an issue. I want to hear from the folks who also have issues with inhaled gluten causing severe neurological issues like blinding headache, problems with cognition, memory, language then motor skills culminating in an overwhelming need to sleep as if drugged (and GI symptoms set in within 12-24 hrs).

And I guess I need some tips on how I can live with this type of reaction and still make a living for my son and I.
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#435 Northland Lady

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Posted 15 September 2009 - 12:56 PM

I havnt been diagnosed celiac and I am pretty new to this but i have just realised yesterday that i am very sensitive too.

I had a reaction yesterday and the only thing it could have been was the paracetamol. I rang the company and to my surprise i found out it has corn in it!!

I think i cant be reacting to it because its 71.4mg per 650mg tablet (4 tablets would be 214.2mg). But i think i did have a reaction. I have stopped taking the paracetamol last night and sleep really well.

I was very very sick, i was bed bound for most of the 10 years i was sick, i agree i think this makes you more sensitive.
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