Newly Diagnosed with Questions

[Celiac Mindwarp]

If you got an epipen see if you can get a trainer pen to practice too.

We got one for my son and we all know exactly what to do, and have family and friends trained too

[L.J.]

Hi Squirmy and Celiac Mindwarp!

I have two epi-pens and a practice one! I have practiced--and so has my hubby--I was told by my doc to use both pens 10 minutes apart--that way it is supposed to work faster!

I thought my ranting session was adequate Squirmy--but yes, I am sure if I would have let loose I could have done much better--but I probably would have been "reported" for the language content!!

[GottaSki]

I thought my ranting session was adequate Squirmy--but yes, I am sure if I would have let loose I could have done much better--but I probably would have been "reported" for the language content!!

I had a nice long companion rant regarding docs, allergists and their lack of education/general knowledge with regard to food intolerance all typed up and ready to post yesterday when the plug got pulled on the site...guess it was a good way to shut down my rant

Had also asked if you did get epi-pens - glad you have.

Take care

[L.J.]

Hi Gotta Ski!

Dog gone it--I would have *loved to see another rant about drs, allergists, etc* I notice the new format here...I miss my emoticons!!

Are they gone???? Or have I just not found them?

Take care!

[GottaSki]

the smileys should be in the top of the box you are typing in with the other font options...I know there has been problems with iPads and maybe others - let me know if you don't have the link while you are posting and I'll let you know if I find out new settings or something else to remedy when I find out.

Oh...you can type out a few simple ones:

: ) =

: ( =

; ) =

: D =

[shadowicewolf]

Epipens are kinda straight forward. Uncap it and jab it in your thigh. Only reason i know how is i have family members who must use them. I used to have one when i was younger as well.

[GFinDC]

Hi LJ,

Those EPI-pens sound like they could be very handy. Do they work for kryptonite too? Probalby do, kryptonite is green like avocadoes, so they should work. I think it is practically guaran-darn-teed in fact.

So, if the sweet potato works out, yuo might be able to do Food Should Taste Good brand sweet potato chips too. That would be good.

I used to have pretty severe hay fever for years before gluten-free. But after gluten-free my allergic reactions tapered off slowly. Now I don't have much of a problem with them at all. They are still there but I don't need to take any anti-histmaines for them anymore. I seldom notice them now in fact. Used to be hard to go outside in the spring, summer and fall tho. Now not a problem.

OK, I have some mullein tea brewing on the stove now. It's green so you might not like it. I picked some mullein the other day when out walking. It has a nice mellow flavor, not too strong.

I'll send you a PM wih my art site link, I can't post it in the thread.

Some people think dairy can cause allergic reactions to be worse. I supppse milk might be a good thing to try removing for a while to see if it makes any difference. GMO's might be another thing to try avoiding. When you buy foods that are marked organic or GMO-free they should be ok. Just something to think about trying, in case it might help.

Well, a day late responding here because the site went down right when I was going to post yeterday. It's a little windy and gray outside today, Sandy is moving in this afternooon. Going to be a long night I think.

[L.J.]

Hi FP,

Good to hear from you! I have eliminated milk, lactose, etc. I have always had trouble with it! I am still experimenting slowly with foods. The sweet potato was yummy, but I had some reactions--slight ones--so going slow with it! Still not sure about them

Fruits are apparently out for me...The link you mentioned between pear and apple is definitely a cross reaction to the allergy I have that is linked to them. (Forgot which one it was, but I was tested positive high allergy to it) And of course, when I eat them, I have trouble too ...Bananas and avocado are also linked as you (and I know). Strawberrys are mentioned as a problem too. I was thinking about blueberrys--just so I could eat some fruit! I miss them!

I did do the cursed blood test that my doc ordered--he did not tell me one of the things he was testing me for--Staphoccaulas (spelling?) for the entire spectrum to see if I have an infection in my body...I hope that I don't, but then I was reminded by my sis that if I did have Staph... the antibiotics they have could help if that is the problem. Quite frankly, I do not think I have it, but we will see! I guess my doc was taking me more seriously than I thought!

One small note--I checked out your arteest link! Love it!!!

Sandy hit hard eh? You all weren't too affected by it--except wind and rain maybe?

In Phoenix, we had beautiful skies and sunshine...my heart goes out to the eastern U.S coastline...

Back to the post here--I switched shampoo, conditioner, lotions, and it seems to have helped. Still some rashes that pop up everyday--but not as severe or as many, so I am staying gluten-free peanut free and no avocados I am happy!

[GFinDC]

Hi LJ,

That's too bad about the sweet potatoes. Maybe after a few months of eating a proper diet like yo mama told you to you will heal enuff to eat them. Sometimes that works for people. Usually they suggest waiting 6 months after stopping a food to challenge it again. I am dairy free also. And carrot free, and grape-free and nightshade and soy free, among others. But there is still plenty of food to eat. So it works out just fine. Maybe you can eat the FSTG olive chips?

Open Original Shared Link

Avoiding gluten in shampoos and such makes sense to me. Especailly if you are having a skin rash, I think it makes sense to avoid gluten on the skin. That's somewhat controversial, but I don't really care. Personally I try not to bring anything with gluten into the house. Not that I am paranoid about gluten, I just don't want to have it around.

I am glad you like the art. It's fun stuff to do for sure.

Well, if you are feeling better without those foods then it makes sense to stay away from them. The allergy responses are kind of scary, but once you identify the triggers and eliminate them things should be fine. Allergy shots might help. I did those for a while and they seemed to help some.

Oh, the superstorm was not to bad around DC. Some people lost power and there were plenty of trees and branches down, some flooding but not too bad. It could have been a lot worse. I think they said only 8 people or so killed around DC.

[L.J.]

Hi!

Yes, I am taking it slow...........not positive about sweet potatos, but I am not adding again for a bit. My rash went a little crazy last night-had to load up on Benadryl, still itchy with lots of rashes today So, I will review my list of what I ate and go from there.

I Must add: (now it sounds like confession time)...I did drink several drinks on Saturday pm. Yesterday, I had some rashes, but not like last night (no alcohol last night). Alot of rashes were out last night along with sore mouth and some sores. My mouth seems better though this morning! I know food/alcohol/poison etc. can take time to work through the body. So I will review any slips--but I am *very* careful--consciously paying attention to what goes in and on my body! (Lotions with gluten/peanuts are definitely a no-no for me).

What did you think about my dr-head testing my blood for Staph? Kinda weird, yes? Anyway, I doubt that it is an issue, but still kinda freeky eeky!

I had not heard about the weather problems in DC--wow--you all got hit too, 8 deaths and it is not even "mentioned" on any news anywhere!

To end on a positive note--Keep painting, keep enjoying each day as we can, and focus on the positives in our lives!

[squirmingitch]

LJ, I have seemed to have rash reactions to alcohol also. The only thing that didn't seem to do it to me was Moscato white wine. I drank some Vodka & got rash reaction & drank some Redbridge gluten-free beer & seemed to get rash reaction. I'm just guessing here but it may be that b/c our guts are leaky & we (with dh) tend to get that stuff going to our skin that the alcohol sets off a rash reaction. I haven't had any of the wine for months now but plan to test it again soon.

[L.J.]

Hi Squirmmy!

No wines for me--not for many years--even before I had my "explosion of rash" and d....

Good to hear from you! How are you doing????

[GFinDC]

Hi LJ,

The doctor testing for staph seems reasonable to me. My dentist always wants me to take antibiotcs before I come in due to some metal in my body. She said infections can get moving around and lodge in places like that. That terminator dude must have been in real trouble!

Taking it slow is a good idear. It is easier to add foods to a limited diet one at a time than try to identify one out of 100 or so foods that might be a problem. Or 2 or 3 out of a 100.

Here's a link to the FAAN, (Food Allergy an Anapylaxis Network) site. I don't know if you have wandered across that one yet. They think food allergies are bad.

Open Original Shared Link

Our local news had the stories about the DC area deaths from the storm, but there is plenty of worse news in NY etc. So stuff just gets lost I suppose.

So you were dinkin' agin eh? I guess it's ok as long as you did your Gregorian monk chants for 10 hours afterwards! Alcohol is hard on the digestive system, so that's why I suggest people avoid it when starting the diet. I figure it's easier to heal your gut if you aren't doing something to hurt it intentionally. I think people just starting the gluten-free diet usually have lots of digestive issues going on, and getting better quickly is easier if they do avoid alcohol. After they are better I think it is fine. Plus people with celiac sometimes have elevated liver enzymes when they are starting out. So it may be easier on the liver and help those levels even out. This about.com article discusses celiac and liver issues, and there are several articles on celiac.com about it also. Plus it makes you rash! Rash and unpredictable, impulsive and kuhrazy! Ahh, you do what you want of course, I just wanted to let you know why I suggest people stay away (and chant) for the beginning of the diet.

Open Original Shared Link

The chanting is optionaI I suppose...

Yep, i gotta get back to painting soon. Been distracted latley and not getting anything done.

[L.J.]

Hi FP,

The chanting did occur of course, however it was altered to uncomfortable moans of irritable digestive and rash issues!

But the chanting does help--and of course, reminds me to avoid alcohol. Ok, the truth, That is how I feel about avoiding alcohol. I do enjoy a drink on the weekends! Oh, but do I enjoy the afteraffects??? no....... So I did not do the full 10 hours of chanting, but did try to do a brain-turnaround.

The FAAN link is very interesting! Certainly confirms my thoughts about the c-r of foods I have been having...

One weird thing--Last night, I dreamt that I could not eat any foods at all--I was skinny as a rail (in my dream)--and I mean "seriously" skinny....I would say that I do need to eat more foods (this is true) but foods that are safe and not poison to me!

So, I will keep eating--and eat more. I need to not lose more weight! (This part is true too)

Let us focus on the wonderful foods we can eat--and to heck with the Glutenous poisons that "still" tempt me-- but I walk on by!!! I think there is a song that has that phrase in it,........Walk on by....! Can't give credit to the ones who sing it--but the phrase is in my head whenever I go into the grocery store!!!

[squirmingitch]

Dion Warwick sings that song. She is er... was Whitney Houston's auntie.

[GFinDC]

Ah yes, good song LJ! I can imagine you hummming that in the donut aisle!

After a while you may join us in feeling sorry for those poor beings eating their gluten fixes. You know they are all just empty people shells full of gluten and chemicals right? Kind of like pod people, with their little alien babies inside. Ewww!

Thanks Squirmy, U wuz so rite!

Dion sings it baby...

I had beans and peas today. Stirred in a little mayo and Daiya cheese shreds too. Plus some Tazo sweet orange tea to warsh it down, down, way down there. Yesterday I was real fancy and added some ham.

I am glad you found the FAAN site useful LJ.

[squirmingitch]

Beans & peas gluten-free? What kind of beans & what kind of peas? I tried that Daiya cheese --- me no like But if I could have mayo with it then it might taste better. Mayo = egg yolk = iodine. Sigh. I adore mayo! And egg & potato salad. Sigh again. Oh well, this too shall pass ---- some day, somewhere over the rainbow.......

I hope your little kitty is sticking close to the house these days.

[GFinDC]

Hi Squirmy,

The peas are Giant grocery store brand, dry split peas. The beans are black beans from the organic store bulk bin, no brand name on them. I rinse them though. So they have to be soaked before cooking. Usually I add ham and onion and plenty of spices. Actually the mayo was a first time thing to try with them today. Hain Celstial brand safflower oil mayo. I saw some kind of mayo sub at the store too, I think it was called Nayo? Yep, found it. It has soy in it tho. Their website says they are are reworking the Nayo product, I guess Nayonaise is a different item.

Open Original Shared Link

Nayoniase ingredients

NGREDIENTS: Soymilk (Water, Organic Whole Soybeans), Sunflower and/or Soybean Oil, Cane Juice (dried), Vinegar, Salt, Mustard (Distilled Vinegar, Water, Mustard Seed, Salt, Turmeric, Paprika, Spice, Garlic Powder), Apple Cider Vinegar, Lemon Juice Concentrate, Guar Gum, Xanthan Gum, Sodium Alginate.

Yep, Muffin is staying inside almost all the time now. She slept on the bed last night. She seems pretty content to be inside these days. Daiya is better than nothing I figure. It is made from pea protein. Sometimes I put some kind of canned fish in the beans. Nothing but fancy cooking in this house!

I just saw a threaf earlier today where the ladies were talking about making a white sauce with milk subs and gaur gum,. Seems like that would be a way to get a mayo sub worked up too. I might try that but use pysillum husks as a thickener instead.

Can you do egg subs? I think I saw some kind of egg sub in the grocery store but I have never tried them. I am ok with eggs but I can't do soy. So most commercial mayos are out for me.

[squirmingitch]

I'm okay with egg whites & soy is a no go for me.

Hellman's CANOLA mayo contains no soy so you could look for that. I tried making eggless mayo 3 times & flopped.

Dried beans & peas are good for you! Actually, your mixture doesn't sound bad at all. Wish I were smelling it cooking right now.

[GFinDC]

Ah yes, Hellman's canola was one I used for awhile. But they changed their ingredients to include potato starch so I quit eating it. No nightshades for me. Now i remebmer the egg sub. They call it Eggbeaters. I have never tried them so don't know if they are good or not. I am not sure what they are made of instead of eggs either. Probably ground smurfs.

Maybe someone will come around with some great idea for a mayo recipe with out eggs.

I get dried mushrooms at the Chinese pharmacy. They are tougher than fresh mushrooms but I like that. You can crunch them up while they are dry to make smaller pieces or leave them whole. I suppose if I ground them they would make good instant mushroom soup too. I've ground dried peas before and the pea flour makes good instant soup. Maybe it's time to grind some more peas. Getting cold and soup is kinda nice now.

[squirmingitch]

Awwwww DRAT! I forgot about you & the nightshades. I have tried eggbeaters in my life ---- blech!

Mushrooms ---- I discovered years ago that I am allergic or at least have a sensitivity to mushrooms. I have never, ever heard of anyone being allergic to mushrooms before. I have never been fond of them & never used them in my own cooking but would not complain if they were in a dish served to me either by friends or while dining out & I did not pick them out but would just eat them. It took me many years to make the connection; many years. But when I eat them I see stars. You know how when you stand up too fast & you get those stars & a bit dizzy? I do that when I eat mushrooms but it's not just when I stand up too fast --- it's when I'm normally walking around. So no shroomies for me although I DO love to smell sauteed mushrooms!

Split pea soup is good on a cold winter day!

[mushroom]

Just what kind of shrooms have you been consuming, seeing stars an' all?

[L.J.]

Oh Shroomie!

I have to admit I wondered the same thing...I am not sure I want to see stars when I am walking around, getting up, or sitting around! But it is either really interesting shrooms or an allergic reaction!

If Squirmy said allergic, then I will accept that! (But you do kind of wonder where those mushrooms are coming from, eh?)

So Squirmy, (not to talk behind your back) How are you doing? Mushrooms are on my to "try" list-- (the good kind!

Are you still on the low iodine diet? I did it meticulously for two weeks--now I am adding eggs (ohhhhhhh, I love my eggs)--but no added salt, etc. Is it helping you?

And, FP, otherwise known as GFinDC--I love split pea soup...is it a requirement to soak them all night???

Me? I'm hanging in there--rashes still hanging around too But not worse, just the ones present get inflammed and make me itch like crazzzzzzzy! Then my *ears* have been itching--for 5 weeks now--changed to pure shampoos, pure lotions, and they still keep reminding me they are ever-present! I know I have ears, they do not need to remind me. (The flaking off of skin in the shower this am bugged me though)! Will an exterminator help with the bugging problem??????

[GFinDC]

Hah, Squirmy, drat is right! Or something more colorful even. Actually, the Hain mayo works fine, just kind of pricey. So now I am going to have to try Eggbeaters just to see how awful they are. No shrooms for you eh? I can hear the soup Nazi now, No shrooms for you! Well, I don't think they make shroom-beaters. Seeing stars is great in Holywood, but not in your dinner! I almost did that today. I drank some lemon tea with soy lecithin in it and went into zombie mode. I thot there couldn't be enuff of it in the tea to cause a problem but it sure did. Recovered after an hour or so tho, so just fine. So long as I don't drink that tea again. I think Shroomie has got your number tho. We may have to ask LJ where she gets these "good" mushrooms she raves about?

So LJ, 2 weeks is a nice start. Yay! But immune reactions can last 2 weeks or more. So you may just be getting to where you are passing a reaction. Could be things will start turning around rash wise. By two months things ought to be getting started on getting somewhere for surely. Of course two years would be a more sure thing. But 6 months is the usual timeilne reccomended before challenging a food intolerance. Six little months, goes by in a flash. Are you into knitting or some hobby to pass the time? Maybe try the Eggbeaters?

Oh, the split peas probably don't really need to be soaked. I just soaked them with the beans since I was already doing that. You can just cook the peas straight, but it might take a couple hours if they aren't soaked. The black beans I soak over night or for 6 to 8 hours. You can boil them for 30 mintues and then soak for 2 hours then cook also. That speeds things up. One of these days I'll put some in a crock pot and leave it on to see how they come out.

Lanolin is supposed to be good for skin to keep it moist. My hands and lips used to crack and split every winter, but since gluten-free they don't do that. I doubt an exterminator will do the trick for the bugginess. Maybe a ShadowIceWolfie woud tho. She's our local expert on bug elimination.

[squirmingitch]

:lol: You guys are funny! :lol: But I assure you the shrooms that I have eaten have all been of the normal, what everyone eats, sold in the grocery store either fresh, canned or in jars kind of mushrooms. The kind everyone uses in spaghetti sauces or for sauteing or in soups, stuffings, or any other dish they make. I will admit I experimented with things in my youth but shrooms was never one of them. I was too scared of those magic shrooms. Even though I had not yet figured out my reaction was to shrooms --- I guess something was protecting me --- some inner voice.

LJ, I am STILL on the low iodine diet. Sometimes I think I may be on it forever & ever. Every time I try a little something with iodine I get a reaction. Gosh, I had one measly little old whole egg several months ago & BAM! dh rash. I eat a slice of cheese or two --- same thing.

I'm sorry you're flaky . Vanicream is good. And I know that this one Vaseline lotion is gluten-free & works very well for me:

Vaseline intensive rescue repairing moisture body lotion. It's fragrance free (but I can smell it) & hypoallergenic.