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Newly Diagnosed with Questions


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#136 Celiac Mindwarp

 
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Posted 19 November 2012 - 10:38 AM

I have dry eyes that get watery. No, honestly. Like officially. No contacts for me either :(.

I think I am going with denial on some other intolerances until after Christmas now. 5 diets in 6 months has done my head in!

Good luck with your next stage
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

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#137 kareng

 
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Posted 19 November 2012 - 11:57 AM

Ok. I'm back from the eye doctor! Honestly! :o It was my son who needed to go.

My eye doc has several patients with Celiac and some with Sjorgens. She said all her Celiac patients, even the kids, have dry eyes. I have a special contact lens called Safigel (sp?). These are for very dry eyes. You throw them out each day. She also said I should use artifcial tears (OK with contacts in) twice a day.

If you make no tears, maybe you need Restasis? It isn't good for your eyes to be too dry.
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santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#138 squirmingitch

 
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Posted 19 November 2012 - 04:35 PM

Okay, as co-winner of the guess what instrument contest.....let's seeeeee...... my favorite gluten-free snack.....hummmmmm..... I might have said sharp cheddar cheese but that's on my no-no list b/c of iodine which makes me want it all the more. Soft egg on gluten-free toast would not have normally been my favorite snack but since that's also on the no-no list I am craving it like crazy. So, of the items on my allowed list at present I will have to say fruit, fresh fruit ---- I just finished dinner but there are some lovely tangerines waiting for me when dinner gets digested a bit.

I also had eye problems before I knew I had celiac. They began around the time I have figured out the celiac was starting to make itself known. I wore rigid contact lenses since I was 14 & had no problem at all until ?8? years ago. Then they started torturing me. I could not tolerate them for more than about 3 hours at a time. Then I got blepharitis --- uh huh --- I now know associated with celiac disease --- then my eyes got dry; not officially dx'd with dry eye type of dry but uncomfortably dry to the point I gave up my contacts & quit wearing them. I despise glasses & my peripheral vision suffers greatly with glasses plus the dh likes to get my scalp where the temples of the glasses hit over my ears. I think I will be able to go back to contacts & can't wait to. Karen, I'm so glad you listed the type you wear so i will know what to ask for. I want to give it a little more time yet & then I'm going to give it a go again!
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#139 L.J.

 
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Posted 19 November 2012 - 06:56 PM

A quick note...Soooo, dry eyes are part of all of this, eh? Wonderful :angry: I miss my contacts too! I too have worn them--but it was a "no go" from my Dr--she said maybe some day.... What exactly does some day mean??????? B)

Fruit for being a co-winner sounds *marvelous* to me!!!!!! Enjoy! :D :D :D :lol:
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#140 GottaSki

 
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Posted 19 November 2012 - 07:14 PM

I lost contacts for a year in my 20s - was able to get them back using disposables - very thin and comfortable. Still have occasional bursts of dry eyes but have avoided Restasis thus far. If your eyes are continuously dry - Restasis is the way to go!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#141 Celiac Mindwarp

 
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Posted 20 November 2012 - 01:51 AM

Wow, another celiac symptom unmasked then. Might have a chat with my friendly optician..
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#142 GFinDC

 
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Posted 20 November 2012 - 07:24 AM

Well LJ, I did get some sesame Halvah at the store yesterday, so that must be my treat! It doesn't have any avocadoes in it tho, but I can live with that. Purty good stuff anyway.

Experimenting with the wool sweaters 'eh LJ? What a bold move! :D Hopefully they take them back or let you exchange them. I am experimenting with black tea myself. Seems like it is going ok so far.

Big plans to do some work on my Jeep soon too. It takes about 3 to 5 minutes for the computer to start up in it. Can't start it without the computer working. Some improved design! :( Simple things made complicated, courtesy of modern man. Oh well.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#143 kareng

 
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Posted 20 November 2012 - 07:45 AM

A quick note...Soooo, dry eyes are part of all of this, eh? Wonderful :angry: I miss my contacts too! I too have worn them--but it was a "no go" from my Dr--she said maybe some day.... What exactly does some day mean??????? B)

Fruit for being a co-winner sounds *marvelous* to me!!!!!! Enjoy! :D :D :D :lol:


Some day probably means that they come out with new contacts all the time. I have what was the newest kind as of a year ago.
Safigel 1 day.

The dry eye contacts are very thin and prone to ripping, so one day disposables helps with that. I will see my eye doc in Feb so, if you want to, you can always PM me & see what kind I get then.
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santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#144 L.J.

 
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Posted 01 December 2012 - 09:49 AM

Hello my Wonderful gluten-free friends!
Long time no talk! I am currently digesting on some new information from my allergist. After believing that I am extremely careful about what I eat (except for the occasional weekend alcohol beverage....) he has determined that I have still other allergies! :rolleyes:

So he wants me to do the "chemicals" patches on my back. These are the nasty chemicals that we get daily and that are in everything! I looked up 3 of the "many" that I will be tested for... Formaldahyde--nasty stuff that is in everyday products. Chemicals that are in clothing, leather, plastics, containers of many kinds, etc. etc. etc.

And that was just one...(Who isn't allergic to Formaldahyde I ask??? :o He believes I have an accumulation of chemicals that I am extremely allergic too--and so wanted to test me that day. Now, the bad news is that these chemical patches are three large strips that stay on my back for *exactly* 3 full days! Because of the absorption process. That means no showers for three days--and I cannot do this to my students.... Peeeeuwwww! Three days of no showers, messy hair, and body odor (yes I sweat!) :wacko: Anyone around me would probably run out of the room I would guess! :lol: :lol: :lol: So, instead, I agreed to do it on New Years Eve--and go without a shower during my Winter Break...my poor hubby, eh? This is where we need an emoticon of someone holding their nose because of how I will smell! :D :D :lol: But, I may sponge bath--and of course, this is a very effective way to get rid of body odors and my dirty hair.... ;)

I am taking my "Fat Pills" really known as Fish Oil for my eyes and skin....(The skin was an added plus after I took them for a week) The optician may look at my eyes today as my new specs are in! Yay? :rolleyes: Happy for new specs, Sad about no Contact Lenses :(

So, thought I would share my new updates and check on how everyone else is doing????

Sesame Halvah sounds heavenly--but honestly, I am not sure what it is FPinDC! :lol: :lol: All wool sweaters are back and credited! :D My skin is doing somewhat better--even though my Allergist saw the rashes that are still present...I am feeling better tho! ;)

Kareng-I hope I will be in contacts soon--my Optician did not sound very positive about it tho--but we shall see! :)

Gotta Ski--Restasis is new to me--I will have to look that one up.

Hope you all are doing well--or at least share if you are not! This forum is wonderful! We can share the goods and bads and the uglys. Oh, I think that's the name of a movie, yes???? The Good The Bad and The Ugly??? :lol: Later GFFs! My new initials for all people posting here--stands for GFFriends! :D
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#145 GottaSki

 
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Posted 01 December 2012 - 10:24 AM

Hey LJ-

Good to hear from you...thought of you the other day as I am on to one more piece of my puzzle. I have an allergic reaction to heat and exercise that has gotten worse each year of my life - the reaction is similar to my reaction to sunflower seeds and avocado -- what do these things have in common? Histamine. It seems that the enzymes needed to regulate histamines are produced in the mucosal lining of the small intestine :blink:

Even more frustration ensued when UCSD's lab along with assistance from Mayo couldn't figure out how to run one of the blood tests necessary to measure the production of these enzymes...I'm still working on it - seems I can visit another country and get the test no problem -- absolutely crazy! Will let you know when I figure this one out.

If you are interested - google "Histamine Intolerance" or "Histamine Foods".

Very glad to hear you are doing better -- keep it up!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#146 L.J.

 
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Posted 02 December 2012 - 11:47 AM

Wow Gotta Ski! Histamines, eh? Very interesting! I too have to watch the sun/heat stuff. Rashes like crazy if I am sweating or in the sun too long. I blamed it on the AZ sun--maybe not though, eh???

Sorry you are having trouble with the lab testing :( I have personally not found labs to give me many answers tho--I hope you have better luck with finding the lab tests!!! :) Let me know what happens!:)
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#147 GFinDC

 
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Posted 02 December 2012 - 12:37 PM

HI LJ,

Halvah is a candy made from sesame seed paste (Tahini). Joyah is the brand I see in stores around here. You can make it yourself altho I have never tried that. i don't buy it often because it doesn't last very long once opened. Very sad :( I suppose you could make something similar with any seed paste or butter. It is a middle Eastern treat. Our equivalent would be peanut butter fudge, kind of.

How to make it:
http://candy.about.c...dy/r/halvah.htm

Disgusting pictures of Halvah: (Don't look ! eww!)

https://www.google.c...biw=853&bih=500

Your allergist has a flaky sounding plan there to me. Heck, if you are allergic to something just stop eating it. Isn't that simpler? If he finds you are allergic to plastics, chemicals in clothes, and chemicals in the air and water, what is the cure? Moving to the moon or an Amish community? Not that there's anything wrong with that. The Amish have some interesting ways of doing things and a great community spirit. They have smoe neat things going on.

A more organic diet and less plastic is ok I think. But if you want to live in the modern world there are limits to how much you can avoid these things. I am not saying you can't live without them, just it is not as simple as eliminating a little gluten or dairy or whatnot. Might be time to get a subscri[tion to the Mother Earth News. And take up hunting and gardening.

If you join up with the local SCA chapter (Society for Creative Anachronism) they teach classes on medieval crafts and arts. Could be very helpful in your new life. i am an SCA member myself.

Ok, I am kidding a lettle, lettle bit. :)

Well, your allergist has some interesting ideas there. I am curious how he plans for you to live if you turn out to be allergic to all modern materials. It could make an intersting reality tv series. I'd be interested in seeing the show! :D

Just kidding, I think you know that. :)

Things here are the same. Good to hear from you!
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#148 L.J.

 
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Posted 07 December 2012 - 09:39 AM

Hi All and Good to hear from you too FPinDC! :lol: :lol:
I really do think I am sooooo funny, yes?? Yes, regarding the chemicals--I guess I will have to become a "CaveWoman"--oh wait--no leather products...That won't do either :D

Honestly, I am worried about the tests--One Anaphalactic reaction "recently" is enough for me! I already know I am allergic to at least two of the chemicals that will be sitting on my back for *three days*... If I am that allergic to chemicals--what in the heck is my back going to do??? :wacko: I have visions of rashes bumping up and becoming blisters--of which I cannot put cream on during the test... Then my mind goes craaazzzzzzzyy...and I think--What if I do an Anaphalactic Routine to these chemicals that we are testing? :ph34r:

My hubby is a bit nervous about this chemical testing thing--so much so that he is taking the days off in case I do have an Anaphalatic Reaction...I hate that he has to do this--but I also thought about it myself. I *hate* being a burden--and this feels like I am being a royal pain in the arse!!! B) Yet, I did not argue with him being around me, which says I truly am afraid of these chemical tests...

Great question--what AM I to do if I am allergic to all of these chemicals??? :o I cannot live in a bubble, or on the moon, (but the sight of earth from the moon would be absolutely beautiful, yes??? :lol:

So, the show will start on New Years Eve Day at 2:45 exactly--i.e. Chemical patches Three patches of them with *many* chemicals per patch....Ugh :ph34r:

This is where I feel like a wimp...Where is the emoticon for *that* feeling???? :lol: :lol: :lol:
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#149 squirmingitch

 
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Posted 07 December 2012 - 10:32 AM

You're braver than I dear girl. Nuh uh ~~~ I wouldn't touch that one with a ten foot pole!

Wishing you a fabulous, NON REACTIVE, New Years Eve & beyond!
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#150 L.J.

 
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Posted 07 December 2012 - 10:54 AM

Hi! Yeah, wondering if I have lost my mind and headed for the funny farm :lol: ...My hubs said, you know you don't have to do the test... Which is true. But, I am still struggling with some rashes--yet I am doing better. :huh:

I am just wondering if I am going to lose all of the progress I have made if I *DO* the freekin' chemical tests??? :ph34r:

Plus the Anaphalactic thing lingering around my mind :ph34r: Uh oh, two dark faces in a row--that's my sign of Itshay, I am in "trouble" :D :lol:

I'll keep thinking on it! Obviously, Squirmy, you would not do them, eh? B) May be giving me some food for thought! :lol:
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