Newly Diagnosed with Questions

[GFinDC]

Hi L. J,

Sounds like good thinking there, we can eat lots of other things besides gluten. The tricky thing is they put gluten in many processed foods you wouldn't nessecarily expect it to be in. So it is easier to avoid the processed foods to start. After a while your ability to eat some foods may improve, usually a good length of time to wait is about 6 months before trialing a problem food. At eh beginning when your digestive system is out of whack from celiac damage, many foods may cause reactions. But as it heals they may not be a problem. Then again they may stay problems too, it is hard to tell until we trial them.

That's sound like an improvement with the blisters. A low iodine diet is supposed to help with the DH blisters / rash. Low iodine and gluten free are a good combo for you it seems. This Livestrong article has a short list of foods with high iodine. You might want to avoid those while your blisters are happening.

Open Original Shared Link

[bartfull]

L.J., I haven't responded to you yet because I don't have DH (Thank God!) and didn't feel I had anything to contribute. But I just wanted to say hello and to let you know that your personality shines through and that you seem to be one heck of a great person. I wish you all the best!

[ciamarie]

Hi LJ,

I just read through this thread, and as a fellow DH sufferer (though mine is MUCH better now), and I saw you mention the cheese rice cakes, my first thought was sulfites. Or MSG (or both). I found that both of those things cause me problems.

Here are some links that may help for either of those, and some ingredients are actually on both lists:

For sulfites:

Open Original Shared Link

Open Original Shared Link

For MSG:

Open Original Shared Link

Open Original Shared Link

Now for what I have figured out I can eat, and I just tested quinoa a few days ago, and it didn't cause problems with my ears (one of the areas I get symptoms), but I did get a bit itchy behind my knees, so I have it on the 'probably ok' list. Another thing I've added recently that's on the 'probably ok' list is blanched almond flour.

The things that I know are o.k. for me are:

* Foster farms chicken

* Natural beef (in the case of beef, 'natural' makes a difference....) though I've had regular hamburgers a couple of times at my brother's house over the past summer and seemed to be fine with that. When I buy it for myself, it's the 'natural' stuff.

* Sweet potatoes

* green beans (fresh and frozen)

* peas (frozen)

* pumpkin (can - Santiam brand is the only one I've tried, only ingredient is pumpkin)

* rice and rice noodles (white rice, noodles and rice flour in particular, I mix in brown rice and/or brown rice flour a lot of the time)

* grapefruit (I almost never used to eat this, but I had a craving for it a couple of weeks ago, and after testing I'm fine with it.)

* red rose tea

* eggs ( I try to get organic)

* organic corn tortillas (I've reacted to most tortilla chips, even the organic ones, so I create my own using the fresh organic tortillas and ex light olive oil)

* honey from a local farmers market

* maple syrup (I'm pretty sure, it's been a few weeks since I've had some...)

* navy beans, great northern beans, split peas

* C&H pure cane sugar

* Pamela's mini ginger snaps cookies

* plain yogurt, add my own applesauce & honey / sugar and not something I eat regularly. I also use it in baking sometimes as an acid with baking soda.

* apples (red and golden delicious both seem fine, haven't tested many other varieties yet)

* Challenge or Tillamook butter. (I recently tried Darigold butter because it cost a bit less, and reacted badly to it, a sulfite reaction with my ears getting waxy & blocked)

* Danish havarti cheese (on occasion)

* Lundberg brown rice cakes (I can usually only find the unsalted)

* yellow onion

* Applegate hot dogs (the great American hot dog I think they call it?)

* Sake (rice wine, only occasionally)

* carrots (usually get fresh organic)

* patty pan squash and zucchini (fm farmers market)

For baking, I use rice flour, and baking soda w/ vinegar or yogurt, and avoid the starches. It's a bit challenging, and I'm still working on it. I use guar gum (Now foods) and sometimes psyllium husk powder. I have some other things to test, but for the most part the above things work for me.

[L.J.]

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"!

  On 10/11/2012 at 7:32 PM, ciamarie said:

Hi LJ,

I just read through this thread, and as a fellow DH sufferer (though mine is MUCH better now), and I saw you mention the cheese rice cakes, my first thought was sulfites. Or MSG (or both). I found that both of those things cause me problems.

Here are some links that may help for either of those, and some ingredients are actually on both lists:

For sulfites:

Open Original Shared Link

Open Original Shared Link

For MSG:

Open Original Shared Link

Open Original Shared Link

Now for what I have figured out I can eat, and I just tested quinoa a few days ago, and it didn't cause problems with my ears (one of the areas I get symptoms), but I did get a bit itchy behind my knees, so I have it on the 'probably ok' list. Another thing I've added recently that's on the 'probably ok' list is blanched almond flour.

The things that I know are o.k. for me are:

* Foster farms chicken

* Natural beef (in the case of beef, 'natural' makes a difference....) though I've had regular hamburgers a couple of times at my brother's house over the past summer and seemed to be fine with that. When I buy it for myself, it's the 'natural' stuff.

* Sweet potatoes

* green beans (fresh and frozen)

* peas (frozen)

* pumpkin (can - Santiam brand is the only one I've tried, only ingredient is pumpkin)

* rice and rice noodles (white rice, noodles and rice flour in particular, I mix in brown rice and/or brown rice flour a lot of the time)

* grapefruit (I almost never used to eat this, but I had a craving for it a couple of weeks ago, and after testing I'm fine with it.)

* red rose tea

* eggs ( I try to get organic)

* organic corn tortillas (I've reacted to most tortilla chips, even the organic ones, so I create my own using the fresh organic tortillas and ex light olive oil)

* honey from a local farmers market

* maple syrup (I'm pretty sure, it's been a few weeks since I've had some...)

* navy beans, great northern beans, split peas

* C&H pure cane sugar

* Pamela's mini ginger snaps cookies

* plain yogurt, add my own applesauce & honey / sugar and not something I eat regularly. I also use it in baking sometimes as an acid with baking soda.

* apples (red and golden delicious both seem fine, haven't tested many other varieties yet)

* Challenge or Tillamook butter. (I recently tried Darigold butter because it cost a bit less, and reacted badly to it, a sulfite reaction with my ears getting waxy & blocked)

* Danish havarti cheese (on occasion)

* Lundberg brown rice cakes (I can usually only find the unsalted)

* yellow onion

* Applegate hot dogs (the great American hot dog I think they call it?)

* Sake (rice wine, only occasionally)

* carrots (usually get fresh organic)

* patty pan squash and zucchini (fm farmers market)

For baking, I use rice flour, and baking soda w/ vinegar or yogurt, and avoid the starches. It's a bit challenging, and I'm still working on it. I use guar gum (Now foods) and sometimes psyllium husk powder. I have some other things to test, but for the most part the above things work for me.

[L.J.]

Hi bartfull!

In my brief time here, I find that everyone seems to be able to contribute! The support, ideas, and "technical information" is truly amazing here! I am guessing that I will be checking out the chat/blog--sounds like a fun and interesting site. I am also guessing I'll find you there! Thanks for the Welcome!

  On 10/11/2012 at 5:50 PM, bartfull said:

L.J., I haven't responded to you yet because I don't have DH (Thank God!) and didn't feel I had anything to contribute. But I just wanted to say hello and to let you know that your personality shines through and that you seem to be one heck of a great person. I wish you all the best!

[L.J.]

Hey G Fin,

I just wanted to tell you why I have that nickname for you. During my first posts, I felt like I was dying a slow, miserable death. Then you posted, and ever since, I think of you as G Fin...because the fins on a fish give them air to breathe. Which is what I got on this site. A breath of fresh air. The fin of a fish also guides them--and when I felt lost in the mire--I needed guidance! Just thought I would let you know!

Yes, the low iodine seems to be helping--Soooooooooo quickly! One more day of Bliss!

As always, thanks for your post! Have a fartingly beautiful day!

  On 10/11/2012 at 3:59 PM, GFinDC said:

Hi L. J,

Sounds like good thinking there, we can eat lots of other things besides gluten. The tricky thing is they put gluten in many processed foods you wouldn't nessecarily expect it to be in. So it is easier to avoid the processed foods to start. After a while your ability to eat some foods may improve, usually a good length of time to wait is about 6 months before trialing a problem food. At eh beginning when your digestive system is out of whack from celiac damage, many foods may cause reactions. But as it heals they may not be a problem. Then again they may stay problems too, it is hard to tell until we trial them.

That's sound like an improvement with the blisters. A low iodine diet is supposed to help with the DH blisters / rash. Low iodine and gluten free are a good combo for you it seems. This Livestrong article has a short list of foods with high iodine. You might want to avoid those while your blisters are happening.

Open Original Shared Link

[GFinDC]

Thanks L. J. it's nice to be compared to a fish! 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. But that doesn't affect the flavor..

Open Original Shared Link

Open Original Shared Link

The Funny Pages on c.com

[mushroom]

GeeEff. I do not walk on my head when in Nevada I just keep forgetting which coast I'm near and where the sun should be

[GFinDC]

  On 10/12/2012 at 2:25 AM, mushroom said:

GeeEff. I do not walk on my head when in Nevada I just keep forgetting which coast I'm near and where the sun should be

Ha ha, Shroomie, that's good, I can help! The sun should be above your head, not down by your feet. You are just looking in the wrong direction! Not surprising tho, it is easy to get cornfused when moving around like that.

[jlaw]

As an aussie, I'm wondering if I should be offended.... although I can't be offended because I'm too busy missing my rice thins

:-( When I left Aus 2.5 years ago it was pre-diagnosis, so I was eating rice thins because they had really good flavours and healthier than potato chips. And of course I wasn't paying much attention to the gluten-free factor, but now I'm wondering...are the flavoured ones gluten free as well? Because that would be awesome. I used to have sundried tomato and the sour cream and onion a lot!.

[jlaw]

  On 10/12/2012 at 3:30 PM, jlaw said:

As an aussie, I'm wondering if I should be offended.... although I can't be offended because I'm too busy missing my rice thins

:-( When I left Aus 2.5 years ago it was pre-diagnosis, so I was eating rice thins because they had really good flavours and healthier than potato chips. And of course I wasn't paying much attention to the gluten-free factor, but now I'm wondering...are the flavoured ones gluten free as well? Because that would be awesome. I used to have sundried tomato and the sour cream and onion a lot!.

p.s I'm totally joking about the offeneded thing

[mushroom]

  On 10/12/2012 at 2:41 PM, GFinDC said:

Ha ha, Shroomie, that's good, I can help! The sun should be above your head, not down by your feet. You are just looking in the wrong direction! Not surprising tho, it is easy to get cornfused when moving around like that.

Yah, and it's easy to ferget which side of the road you should be on when you're equally comfortable with both (NOTE: driver and turn signal always in middle of the road!!!) but still, watch out

[L.J.]

Ugh and Itshay!... Bad

I had a good day. Just a few outbreaks on my skin after eating avocado. Came home, had dinner. One hamburger plain patty with avocado on the side.

Itshay again... I went into the bathroom--I wasn't feeling well. It was within 30 minutes of eating. I was sweating profusely all over my body. I thought "this is weird". Then I don't remember...my husband came in because I had been gone so long. I had passed out He was able to "get me moved" to a chair--but I was sweating, couldn't breathe. Gasping. Couldn't talk. I remember but was very "out of it". He said, you are having an Anaphelectic Reaction...gave me instant Benadryl--It was difficult to swallow, but my throat was still open some...He said we would call 911 if I didn't improve soon...very soon... He then poured a Benedryl capsule into a small amount of water and I sipped it between gasping for air. I became slowly more "aware of my surroundings"... after awhile, could talk some. I stabilized in awhile, but time is fuzzy for me. Then, I went into the shivers--they lasted for what seemed a long time. In Phoenix, it's still warm, and I was shivering like it was 20 degrees. I did not understand this. He said my body was probably going into some "shock"... Finally, I quit shivering. I was able to breathe better. My throat loosened and I was able to "drink water" better... This morning, he said my lips were blue (last night) and I was white as a ghost! (Not Halloween yet tho I still have to find some humor somewhere.... I have eaten avocado before even on gluten-free diet. I have had anaphelatic reaction to walnuts--but it was not this bad. I have not passed out before. But I am crying--but I don't know the icon for that... So no avocados are on the NO EAT list...

Itshay! again. My doctors are closed today. (What would they do except get mad that I did not call 911?) My husband has a medical background, so I'm fine without calling--once I was more stable. I will be getting an epi pen. I need one.

G Fin--you will be quite interested to know that even in a passed out state--a person continues to fart...

So, question???? Very basic really...Reactions to gluten are allergy based? Yes?

[bartfull]

Might one say that GFin is a "farty-pants"? (Now where is that emoticon that shows someone running away?)

[mushroom]

No, gluten reactions are auto-immune based. HOWEVER, it is possible to be celiac and allergic to avocado

[L.J.]

  On 10/12/2012 at 4:14 PM, bartfull said:

Might one say that GFin is a "farty-pants"? (Now where is that emoticon that shows someone running away?)

Bartfull,

Please don't run away! Do you have anything just anything to say to help me get more grounded?

OK, GFin is a "farty-pants"...last night I think I fit that description too though!

[bartfull]

Well, I just looked up avocado AND walnut allergy and found this: Open Original Shared Link

I am not familiar with this site so I'm not sure how reliable their info is, but it seems there are two types of allergies to avocado, and one of them makes nut allergies more likely.

[jlaw]

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.

[L.J.]

  On 10/12/2012 at 4:17 PM, mushroom said:

No, gluten reactions are auto-immune based. HOWEVER, it is possible to be celiac and allergic to avocado

Hi Mushroom!

I think I just need to get a little "grounded" today... Thank you for responding. I don't know if I am auto-immune--but I know my body seems be reacting to a lot of things. In severe ways... I think that is an understatement regarding last night

[L.J.]

  On 10/12/2012 at 4:28 PM, bartfull said:

Well, I just looked up avocado AND walnut allergy and found this: Open Original Shared Link

I am not familiar with this site so I'm not sure how reliable their info is, but it seems there are two types of allergies to avocado, and one of them makes nut allergies more likely.

Hey Bartfull,

Interesting that they are related, eh? Thanks for not running away!

Also, thanks for looking up the site. I won't go into it right now...I believe what you found!

So, on a lighter note--what is Bartfull ?? Just curious--I have just been wondering

[L.J.]

  On 10/12/2012 at 4:37 PM, jlaw said:

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.

[L.J.]

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!

I am not driving today. Resting. My head is in a froggy fog. (croak croak). 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.

[mushroom]

  On 10/12/2012 at 5:46 PM, L.J. said:

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)

[bartfull]

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!

[ciamarie]

  On 10/11/2012 at 9:35 PM, L.J. said:

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. 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.