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Newly Diagnosed with Questions


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#46 L.J.

 
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Posted 12 October 2012 - 08:54 AM

L.J - I'm so sorry about your experience. That sounds intense. Yay for helpful husbands. I wanted to add that if your rash/spots are DH, the timing of their appearance is not directly related to when you have eaten. There is much variation on the time lag between eating something 'bad' and spots appearing, if there is any correlation at all. For those that are well accustomed, they can see a new patch appear and know that they got glutened 3 hours ago (or 3 days or whatever it is for them.) But the confusing factor is that DH can show up whenever it feels like it, regardless of ingestion. This is why it can take months or even years to heal, even if someone is completely gluten free. Spots will appear while Iga is still present on our blood and apparently it can take ages to clear.
Anyway, I guess my point is, that if you get spots it might not necessarily be because you are reacting to the thing you ate last. I'm hoping that you can expand your safe list, if the reason you are ruling some things out is because spots appeared after eating them.


Hi Jlaw!
I have heard that our bodies don't react instantly--it just seems like mine dones. It means I need to be aware though! I had eaten the avocado at lunch...then dinner. I think that is why I am relating it to the problem last night. Everything else I ate was on my "very safe list" of gluten-free free (and my other allergy free foods). Thanks for your information though....I may need to restart my daily food intake list again. :)
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#47 L.J.

 
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Posted 12 October 2012 - 09:46 AM

I am just going to write...I hope that is ok. I called my doctor for an Epi Pen--they thought they could get me one after last night without seeing my doc (who has Friday off) Both of my doctors dealing with this flippin' problem are off today!

Note to Self--Only have extreme reactions during the days, preferably Monday-Thursday! :D

I am not driving today. Resting. My head is in a froggy fog. (croak croak). :ph34r: Not sure what that icon is--but it fits how I feel right now.

Just open to anyone's feedback to help me get grounded,,,,, I am always open to humor--even "dark humor".

Itshay. Ugh. sigh.
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#48 mushroom

 
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Posted 12 October 2012 - 10:09 AM

Just open to anyone's feedback to help me get grounded,,,,, I am always open to humor--even "dark humor".

Itshay. Ugh. sigh.


What doesn't kill you makes you stronger (eventually) :ph34r:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#49 bartfull

 
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Posted 12 October 2012 - 10:41 AM

Bart was my dog. When he was bad I called him Bartless. When he was good I called him Bartfull. A lot of folks here mistook me for a man named Bart at first. I almost changed my name to "Bart's Mom", but then they would have thought I had a son with celiac. Let's just say I like to keep people as confused as I am! :blink: :lol:
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#50 ciamarie

 
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Posted 12 October 2012 - 10:49 AM

Hi Ciamarie!

I copied your list of foods--it is a great way to start adding "possible safe foods" that fit with my list of poisons. :) Thank you so much for sharing! I do love the new ideas, the amazing positive thoughts and the knowledge people share here!

I am guessing you are right on sulfites. When I look at anything on food with that--I seem to question it. Sometimes, it seems our bodies unconciously "tell us" to not eat that--especially when we see it keep popping up on things that may us ill!

More knowledge equals More wisdom! Wisdom means less fear of the "unknown poisons"! :)

No kidding, about having less fear, especially after your avocado incident!
I decided to type the list since it's taken me months of trial and error and a food diary and searching these forums, etc. to finally pin it down enough that I have actually been able to go several days at a stretch recently feeling pretty good. Then the stretch gets broken by testing something new or things like butter that should be fine but it's not. :rolleyes: And on a couple of replies I saw you asking people 'what do you eat?' I can very much relate to being afraid to eat anything, too; so I hope it helps and hope you're feeling great soon. :)
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Gluten-free since the end of October 2011

#51 L.J.

 
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Posted 12 October 2012 - 03:07 PM

What doesn't kill you makes you stronger (eventually) :ph34r:


Ohhh Mushroom,

So true. I am stronger. I am still fighting the dragon--more than I knew. But I am stronger...and I found out (through my daughter who is an RN in cardiac ICU) oh, now I feel really old :)

I found out that if there is an allergy to latex, then there is probably an allergy to bananas and avocados. :) Guess what I have been eating every day for two weeks??? <_<

So, my doc has me on the epi-pen for emergencies...(I hope there are no more times of emergencies)...with the addition of calling 911. :( I really do not like that idea-but I respect the request...(Plus I have heard it from two other people as well). What does a person do when in anaphalytic reactions? Nothing...that person is to out of it... ugh, :( itshay.

I am feeling better than this am, I am thinking clearer (so I am told)--and feeling more grounded...

Thanks for the reminder of being stronger... :D

With knowledge, comes wisdom, With wisdom comes Strength! My mantra for today! :)
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#52 L.J.

 
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Posted 12 October 2012 - 03:11 PM

Bart was my dog. When he was bad I called him Bartless. When he was good I called him Bartfull. A lot of folks here mistook me for a man named Bart at first. I almost changed my name to "Bart's Mom", but then they would have thought I had a son with celiac. Let's just say I like to keep people as confused as I am! :blink: :lol:


Hi bartfull!

I *knew* there had to be a funny story behind your name! LOL :D Mystery (and confusion) is the way of life it seems! We can relish it--or be scared!
I prefer relishing the confusion and accept the unexpected! :D:)
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#53 squirmingitch

 
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Posted 12 October 2012 - 03:23 PM

Sorry for being AWOL but something arose which required all of our wits to deal with. It's still ongoing so I may go AWOL again at times.

Well, L.J.! Looks like you are on the path to healing. I love your attitude!!!!!!!!!!!!!!Posted Image I've been enjoying all the posts on this thread. Witty repartee.
So, okay, no desire to relentlessly pursue an official dx. Tee-rific! Then no more worries about the can & can nots of all that junk.

Wow on the avocado thing. I'm so sorry you had that reaction & soooooo glad your hubs was around & decided to check on you. Close call that.
I'm also surprised about the whole avocado, banana, walnut, mango, latex etc.... thing. Who'da thunk it?

Okay, I have lots of catching up to do on lots of things. Until later.....
Cheerio!Posted Image
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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.

 


#54 L.J.

 
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Posted 12 October 2012 - 04:25 PM

Sorry for being AWOL but something arose which required all of our wits to deal with. It's still ongoing so I may go AWOL again at times.

Well, L.J.! Looks like you are on the path to healing. I love your attitude!!!!!!!!!!!!!!Posted Image I've been enjoying all the posts on this thread. Witty repartee.
So, okay, no desire to relentlessly pursue an official dx. Tee-rific! Then no more worries about the can & can nots of all that junk.

Wow on the avocado thing. I'm so sorry you had that reaction & soooooo glad your hubs was around & decided to check on you. Close call that.
I'm also surprised about the whole avocado, banana, walnut, mango, latex etc.... thing. Who'da thunk it?

Okay, I have lots of catching up to do on lots of things. Until later.....
Cheerio!Posted Image


Well Squirmy, (In my mind I call you Compassionate Squirmy--seems to fit you well) :D
Yes, the avodado thing pretty well messed my mind up.. Foggy...
But better every hour!

Please do what you need to do...I appreciate your feedback, info, and of course, your compassion! Hugs to you! (((((((((Squirmy)))))))))

Just in case you need a few! :D Cheerio (Don't you just love it from Squirmmy?) :)
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#55 L.J.

 
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Posted 13 October 2012 - 10:12 AM

Hi G Fin,

Yes, fish are wonderful! Please consider it a compliment!

I am sure that you don't have time to reply to everyone or keep track--this is a *very* busy site! An update--I had an Anaphylactic Reaction Thurs. pm. Bad one. :( Won't go into the details, but, (I mentioned it to Bartfull) that I thought you would be especially interested to know that even when a person is passed out--they keep farting! :D We both agreed that you and me (after finding that info out) are officially "farty pants"... :D :P

Also, thanks for the info on Rice Cakes. I will look for Lundberg--the name is familiar, so I am betting I have seen them.

I also checked out the funny pages thread! LOL The funny things they yak about just made me laugh yesterday! Just what I needed to help my very froggy head!

As always, Your humor is part of your "magic" in posts! :D


Thanks L. J. it's nice to be compared to a fish! :D I think? Ha Ha. Well, good to hear you are doing better. If you really want to see how the people around here's minds work, you can check out the funny pages thread. Although it might be a little scary too! Most of the people in the funny pages don't know how to tipe or spiel wright or someting. They all seem to know how to drink real well tho.

Rice cakes are ok if they are gluten-free, but Quaker rice cakes have kind of an iffy reputation for celiacs. Lundberg is probably a better one to get. I don't know what brand you have of course.

If you want some chips, look for Food Should Taste Good brand sweet potato chips or olive chips. Corn Thins are another alternative and are similar to rice cakes but thinner. Hence the "Thin" in the name. They are about 1/2 or less a thick as rice cakes. They are made in Australia in a dedicated gluten-free facility and shipped to other countries. You might find they are upside down on the shelf. :o :( But that doesn't affect the flavor.. :)

Corn Thins site

FSTG chips site

The Funny Pages on c.com


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#56 GFinDC

 
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Posted 13 October 2012 - 01:21 PM

Wow L.J, you sure know who to make eating avcadoes exciting! That was a big deal for sure. Good thing you had hubs to drag you off your throne and plant you back in reality. Farty-pants it is then, but I may have to reverse that. My initials are PF, so FP is just PF backwards. K, hold your nose, here it comes! :ph34r: :D You and Bartfull are safe though, mainly because you are far away. :) That weird emoticon is used for lots of different things, it's kind of a fill in for any need emoticon.

So, lets see, were you eating bananas all week? They sure are good aren't they? :) Hmm, I was wondering how you were doing so now I know. The Bendryl seems like a good idea to keep handy. You know it almost sounds like you should try an elimination diet. One way to one is to start with 5 foods that you think are safe for you. Eat those for 2 weeks or until your symptoms decrease. Then add one food for a week and see how you do. I've heard of birch allergy and seems it is related to celery also.

Well, here is a list of some possible allergy cross-reactive foods. Allergies are IgE reactions, and some people react to more than one food in a group. Several people have reported that their allergy type symptoms decreased after being gluten-free for a while. Others report that their allergies stay the same or get worse. So it is a mixed bag on how things might go in that department. My own allergies got much less severe after being gluten-free a while. I used to buy antihistamines once a week but don't buy them more than once a or twice a year now. And seldom use them. Mine was hayfever though, not foods. Unless my grapes thing is an allergy reaction,. I am not sure on that. Oh goodie, look it there. Mayo didn't list avcadoes so you must not have a problem with them! :D

well,the Mayo listing doesn't post correctly so you will need to hit their site to see it. It is a little table of foods that may cause reactions.

Common cross-reactivity between pollens and fruits and vegetables:

If you are allergic toBirch pollenRagweed pollenGrassesMugwort pollen You may also have a reaction to: Apples
Carrots
Celery
Hazelnuts
Peaches
Pears
Raw potatoes Bananas
Melons
(cantaloupe, honeydew and watermelon) Tomatoes
Tomatoes Apples
Carrots
Celery
Kiwi fruit
Peanuts
Some spices (caraway seeds, parsley, coriander, anise seeds, fennel seeds)
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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

#57 GottaSki

 
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Posted 13 October 2012 - 01:37 PM

Hi LJ-

I had a very scary anaphylactic reaction to sesame seeds while challenging them on a full elimination diet. Very similar to your experience - my doc also prescribed epi-pens which I carry everywhere. Thankfully I have not had to use them yet, but as these reactions can worsen it is far better to be safe than sorry.

What may be of interest to you is after the incident and some other serious reactions during my elimination diet I had full allergy blood and scratch tests run - again - have had them a few times in my life. All food allergies were negative - again. So if you have any doubt that you can have a very serious anaphylactic reaction from food intolerance - don't it is very real and should never be dismissed.

Also of note...I lost avocado very early into my elimination diet - I hadn't removed avocado as possible problem. Had avo slices on a salad and my stomach bloated up - within an hour I looked 9 months pregnant - crazy. I trial foods I have lost at six month intervals - except I will never eat seeds again because of the anaphylaxis - anyway have trialed avocados twice and still can't eat them - I really miss guacamole!

I'm going to PM you the food log entry I had from sesame seeds...don't want to post it here and hijack your thread from something that happened quite awhile ago.

Glad your doc ordered you epi-pens - hope you never have to use them :)
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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 :)


#58 L.J.

 
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Posted 13 October 2012 - 03:49 PM

Hey PF :D

Uhhhh, I thank you for this list--But these are most of what I considered my "safe" foods. Just finished eating a pear! :rolleyes::unsure: Seriously, these are *all* on my almost daily eating list...I am not sure what to do with that! After thinking bananas were "very safe" only to find out they feed into the avocado allergy thing!

Ugh! I'll keep looking!

Today? I am exhausted. Slept, ate egg whites and gluten-free bread, Slept, ate a pear...Froggy minded still (rivvet, rivvet or croak croak) What sound does a frog make anyway? :D

The great news is when I looked in my cupboard, guess what I found in a new package? Lundberg rice Cakes-unflavored! Hooray!!!! Out with Quaker-in with Lundberg! :D

Are you doing well? I know you give tons of energy to us here, so I wanted to ask about you? Should you care to share! ;)


Wow L.J, you sure know who to make eating avcadoes exciting! That was a big deal for sure. Good thing you had hubs to drag you off your throne and plant you back in reality. Farty-pants it is then, but I may have to reverse that. My initials are PF, so FP is just PF backwards. K, hold your nose, here it comes! :ph34r: :D You and Bartfull are safe though, mainly because you are far away. :) That weird emoticon is used for lots of different things, it's kind of a fill in for any need emoticon.

So, lets see, were you eating bananas all week? They sure are good aren't they? :) Hmm, I was wondering how you were doing so now I know. The Bendryl seems like a good idea to keep handy. You know it almost sounds like you should try an elimination diet. One way to one is to start with 5 foods that you think are safe for you. Eat those for 2 weeks or until your symptoms decrease. Then add one food for a week and see how you do. I've heard of birch allergy and seems it is related to celery also.

Well, here is a list of some possible allergy cross-reactive foods. Allergies are IgE reactions, and some people react to more than one food in a group. Several people have reported that their allergy type symptoms decreased after being gluten-free for a while. Others report that their allergies stay the same or get worse. So it is a mixed bag on how things might go in that department. My own allergies got much less severe after being gluten-free a while. I used to buy antihistamines once a week but don't buy them more than once a or twice a year now. And seldom use them. Mine was hayfever though, not foods. Unless my grapes thing is an allergy reaction,. I am not sure on that. Oh goodie, look it there. Mayo didn't list avcadoes so you must not have a problem with them! :D

well,the Mayo listing doesn't post correctly so you will need to hit their site to see it. It is a little table of foods that may cause reactions.

Common cross-reactivity between pollens and fruits and vegetables:

If you are allergic toBirch pollenRagweed pollenGrassesMugwort pollen You may also have a reaction to: Apples
Carrots
Celery
Hazelnuts
Peaches
Pears
Raw potatoes Bananas
Melons
(cantaloupe, honeydew and watermelon) Tomatoes
Tomatoes Apples
Carrots
Celery
Kiwi fruit
Peanuts
Some spices (caraway seeds, parsley, coriander, anise seeds, fennel seeds)


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#59 L.J.

 
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Posted 13 October 2012 - 03:55 PM

I am scared to eat sesame seeds myself...rather, I should say that when I have tried them, I seem to react! So I am very leery of them!

Thanks for the sharing of info--Anaphylactic pretty much has taken it out of me--I am still feeling exhausted! Froggy headed! And honestly, I have not driven--I truly do not think I am able to think well right now!

Thanks for sharing your experience! And no sesame seeds or avocados, right? :D




Hi LJ-

I had a very scary anaphylactic reaction to sesame seeds while challenging them on a full elimination diet. Very similar to your experience - my doc also prescribed epi-pens which I carry everywhere. Thankfully I have not had to use them yet, but as these reactions can worsen it is far better to be safe than sorry.

What may be of interest to you is after the incident and some other serious reactions during my elimination diet I had full allergy blood and scratch tests run - again - have had them a few times in my life. All food allergies were negative - again. So if you have any doubt that you can have a very serious anaphylactic reaction from food intolerance - don't it is very real and should never be dismissed.

Also of note...I lost avocado very early into my elimination diet - I hadn't removed avocado as possible problem. Had avo slices on a salad and my stomach bloated up - within an hour I looked 9 months pregnant - crazy. I trial foods I have lost at six month intervals - except I will never eat seeds again because of the anaphylaxis - anyway have trialed avocados twice and still can't eat them - I really miss guacamole!

I'm going to PM you the food log entry I had from sesame seeds...don't want to post it here and hijack your thread from something that happened quite awhile ago.

Glad your doc ordered you epi-pens - hope you never have to use them :)


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#60 L.J.

 
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Posted 13 October 2012 - 04:29 PM

Actually PF, the whole list is *not* on my safe list--only half of them are...the other half are on my "no" list...Makes me wonder about the half I think are safe. But, I will see...

One question, (seems simple...but I am a bit fearful of trying new foods still)???
I have been wanting to try some pure cherry jam on a Rice Cake--Lundberg now! :D

I know you said avoid sweets--but I rarely eat them--do you think cherry jam is a good idea to try so quick??? (I read this, and I think, "Oh, L.J., you really are lame!" :D But that's where I am right now... :P


Hey PF :D

Uhhhh, I thank you for this list--But these are most of what I considered my "safe" foods. Just finished eating a pear! :rolleyes::unsure: Seriously, these are *all* on my almost daily eating list...I am not sure what to do with that! After thinking bananas were "very safe" only to find out they feed into the avocado allergy thing!

Ugh! I'll keep looking!

Today? I am exhausted. Slept, ate egg whites and gluten-free bread, Slept, ate a pear...Froggy minded still (rivvet, rivvet or croak croak) What sound does a frog make anyway? :D

The great news is when I looked in my cupboard, guess what I found in a new package? Lundberg rice Cakes-unflavored! Hooray!!!! Out with Quaker-in with Lundberg! :D

Are you doing well? I know you give tons of energy to us here, so I wanted to ask about you? Should you care to share! ;)


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