Newly Diagnosed with Questions

[L.J.]

We certainly think that we are *quite* humorous Squirmmy! Hmmmm, so the iodine diet has helped you with the rash, eh? Good news for you--but it is sooooooo hard to stay on! I am gluten-free--but adding the iodine free is difficult for me! I miss my eggs. I have tried eggbeaters...to me, kind of like egg whites with yellow...

FPinDC I do love to knit! How on earth did you guess that one? I have completed one little present for holidays, started another. Two months ago, I couldn't even *think* of knitting because of the rashes on my hands. Progress!!! Yahoooo! :lol:

I do want to add butternut squash. I have one that is cooked--sitting in my fridge. Something in me says no...but I Love butternut squash which tells me it is probably *not* good for me. If I love something too much and crave it--it is not a good sign. Does that sound superstitious? Has anyone else found that the foods they Craaaaave and Love are the foods they react to? I swear that is the case for me! (I have been trying to find a way to use that emoticon since I saw it here)!!!!

Pea soup I am craving. Are peas a legume? I tried some pinto beans three days ago made from the dry ones. Yummy, but it is Not on the iodine diet--in fact a no-no, and I was froggy headed afterward. Maybe they were a cousin to Squirmmy's shrooms??

[GFinDC]

Oh we are funny alright Squirmy, funny in the head! Where's that farm we were supposed to be staying at?

Ah, so a woman who likes knitting. Good stuff there LJ. It's so neat that you can make useful things like that. It's great to make something with your own hands. I've got a nice sweater on right now. They sure make a difference in the winter time.

I wonder if you could test the squash by eating a very small amount? Or maybe just putting a little in your mouth and spitting it out, and waiting to see if there is a reaction? Another person said they scratched themselves with stale wheat bread and that showed a skin rection. I guess a do it yourself scratch test is possible. Shoot, with those knitting needles flying around it may be impossible to avoid! Seems like ti would be hard to scratch yourself with a squash tho.

I believe we do crave things that are bad for us. Don't get me started on blonds, we might be here all night! Just kidding. LOL. But that doesn't mean everything we crave is bad for us. I think people sometimes crave foods when they are deficient in vitamins. And of course eating is very habitual for most people. So they tend to want things they are used to any old time. And since we learn to eat as young children i it is a very ingrained thing to expect to eat whatever/whenever. Old habits die hard. Until new ones are formed that is.

I am going to probably try some pumkin again soon. Last time I tried some it was kind of not so great results. Maybe this time it will go better. I have to really watch my sugar intake tho, stuff does a number on me. Maybe pumpkin soup would work. That shouldn't need much in the way of sugar.

Catch you later gators!

[L.J.]

Oh, How I love when I Glut myself....At least that is what I think happened last night. Ugh I had chills, shivering, and dizzy-head. Nauseaus... (sp?) heart racing. Ich. This is not my usual reaction to Glut. One white potato. I doubted it at first, but, now I can only come up with that... Guess they are out. Then a leaky gut this am. Pretty well glutenized I think

Oh well. Onward and forward...feel better now. But, uhhhhhh, last night, I went to bed Hiding under the covers helps!

I need to knit some more--It is good therapy for me! FPinDC, I do one more hobby--can you guess it? It is musical--my only hint!

Back to the basics of eating...Pick up some veg's and goodbye for awhile to white taters! In a while, my fellow GFers! (Is that a word?)

[mushroom]

Oh, How I love when I Glut myself....At least that is what I think happened last night. Ugh I had chills, shivering, and dizzy-head. Nauseaus... (sp?) heart racing.

This is it, exactly.... the way I used to react to lectins (of which potatoes have a lot ) For me, eventually it would ultimately lead to a brief faint. I would be frantically swallowing yogurt trying to calm the storm in my gut and make it all go away. But it seems to be a response of the vagus nerve and once set in motion you just have to ride it out, hopefullly without fainting I ended up being sensitive to quite a few lectin families, much more than is usual unfortunately, for those who have lectin problems. And yes, if you have a leaky gut you can keep losing more and more foods, found that one out.

If you are not already doing so, I would suggest a really strong probiotic, along with L-glutamine and, if you are having trouble digesting what you do ingest, some digestive enzymes.

And yes, split peas are a legume. I used to love split pea soup with that good smoky ham flavor

I hope you do not have lectin problems. If you want to read about them, here are some links:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[GFinDC]

Oh, How I love when I Glut myself....At least that is what I think happened last night. Ugh I had chills, shivering, and dizzy-head. Nauseaus... (sp?) heart racing. Ich. This is not my usual reaction to Glut. One white potato. I doubted it at first, but, now I can only come up with that... Guess they are out. Then a leaky gut this am. Pretty well glutenized I think

Oh well. Onward and forward...feel better now. But, uhhhhhh, last night, I went to bed Hiding under the covers helps!

I need to knit some more--It is good therapy for me! FPinDC, I do one more hobby--can you guess it? It is musical--my only hint!

Back to the basics of eating...Pick up some veg's and goodbye for awhile to white taters! In a while, my fellow GFers! (Is that a word?)

Oh-Oh, the nightahdes are attacking! Tomatoes, potatoes, peppers and eggplant ftom outerspace! Could be a problem with lectins like Shroomster said. I react to nightshades myself. And not in the common lovey-dovey manner. It is a negatory reaction. But I don't think I have any major problems with other lectiins. Nigthshades seem to be it. Except for the other stuff that is. You could trial the other nightshades one at a time to see if they are a problem. Since it probably wasn't gluten that got ys, it may have been a tatering. Or a nigthshadering. OK, that was a foul one, hold your nose!

I'm not sure what all foods have lectins, I know some grains do. Like our favorite wheat. There are probably lots more. So hopefully iti's just nightshades and not lectins. Nightshades have alkaloids in them that can cause problems. That's why they say not to eat the eyes of potatoes because the alkaloids are even higher in the eyes and can cause anyone to be sick. Especially the green eyes. Green eyes in women are ok tho. They use alkaloids as medicines too. Tobacco is a nightshade also.

Well lets see another hobby, something muscial. I can't see drums and knitting going together. Knitting and guitar could work tho. But I am leaning towards violin in this case. What do I get if I am right? Shroomie will probably guess kazoo or some such. And Squirmy will probably guess harp or base.

See, you are learning lots of neat stuff about your body L.J. And it's hard to tell what other interesting things it has to teach you about itself. Quite an adventure eh?

Later GFer!

[squirmingitch]

I'm thinking piano or flute. Floutist?

I'm sorry the tater got you. I'm off to read about Shroomie's lectins.

[L.J.]

Hi All!

OK, I have been AWOL for a bit. Hectic new schedule, and my sis visiting until Friday!

So, white potatos are a Nightshade??? I know I can't eat nightshades...Tried a Green Pepper...ugh White potato...ugh My family is beginning to think I am overreacting sometimes--but as we know--the symptoms are very obvious after awhile!!!

Yesterday, I went shopping! I have lost weight--enough that I had no clothes that fit...Went craazzzzzy...and then did not look at the labels in *all* of the sweaters I bought What was I thinking?????? Sure enough, I leave the store and start feeling glutted I had not eaten a thing...but all the symptoms were there. You know that frantic frenzy feeling of jitteryness???? Then the sweats and ugh Read All the labels--and sure enough, wool was in two of the sweaters I bought--which my rash and arms, hands, torso went craaaazzzzzzy on So returning those--and learned yet another lesson. Allergy to wool has been with me for many many years--and I bought two without looking???? Where was my head????

On the good news--I started a "Fat Pill"--otherwise known as Fish Oil. It is a good brand--of which I now cannot remember, but had no citrus, no mango, no flavorings--but oh, we will see. Took it about an hour ago. My skin is so cracked and dry that I feel like a snake shedding it's skin....(That is one visual image)...Thankfully, I am not a snake--a friendly gluten-free woman with blue eyes FP...and yes, played the piano since I was 5 (Squirmy wins that guess) Also, I played the violin from 10 to 18. FP wins that one! :lol: So the prize for guessing correctly...hmm....I think you're favorite gluten-free snack that is something decadent but healthy for you!!!! Then, describe what you ate--even if I'm allergic. (If you love avocado--*please* eat it if it's on your safe list--ooh, I can never have guacamole again)....Pea soup or lentil soup would also be on my decadent list! So enjoy knowing you guessed right!!!!!!!

And Shroomie, looks like I'll be looking into lectins The more knowledge the better tho!!! In a bit my gluten-free friends!

[kareng]

Hi All!

OK, I have been AWOL for a bit. Hectic new schedule, and my sis visiting until Friday!

Feed her all the nightshades left in the house and dress her in wool!

[L.J.]

Feed her all the nightshades left in the house and dress her in wool!

Oh Kareng!

You really want me to go craazzzzzy in the gluttened way--wrap me tin foil and slather Vanicream on quick! :lol:

Then send me out to the desert (It is right behind my house--not far to get me there ) and a quick death...

So Kareng, I did have one more thing that came up--I went to my optometrist, who has said that I have *no* "tears"...she had to squeeze my eyes to get some to show up. Needless to say, no contact lenses anymore But she said if I did not start on the "Fat Pills" i.e. Fish Oil... My eyes were going to be permanently damaged. Have you or anyone else heard of this????? Crazzzzzyy!

But I am feeling good after one whole hour after taking my "fat pill". Yay! I hope I can continue it!

Oh, I decided to skip the desert visit Kareng

[kareng]

Running out the door. I'll get back to you on the eye thing. I have the same issues.

[Celiac Mindwarp]

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

[kareng]

Ok. I'm back from the eye doctor! Honestly! 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.

[squirmingitch]

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!

[L.J.]

A quick note...Soooo, dry eyes are part of all of this, eh? Wonderful 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???????

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

[GottaSki]

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!

[Celiac Mindwarp]

Wow, another celiac symptom unmasked then. Might have a chat with my friendly optician..

[GFinDC]

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! 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.

[kareng]

A quick note...Soooo, dry eyes are part of all of this, eh? Wonderful 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???????

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

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.

[L.J.]

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!

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??? 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!) Anyone around me would probably run out of the room I would guess! :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 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? 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: All wool sweaters are back and credited! 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??? Later GFFs! My new initials for all people posting here--stands for GFFriends!

[GottaSki]

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

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!

[L.J.]

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!

[GFinDC]

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:

Open Original Shared Link

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

Open Original Shared Link

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!

Just kidding, I think you know that.

Things here are the same. Good to hear from you!

[L.J.]

Hi All and Good to hear from you too FPinDC! :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

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??? 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?

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!!! 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??? I cannot live in a bubble, or on the moon, (but the sight of earth from the moon would be absolutely beautiful, yes???

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

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

[squirmingitch]

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!

[L.J.]

Hi! Yeah, wondering if I have lost my mind and headed for the funny farm ...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.

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

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

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