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Newly Diagnosed with Questions


L.J.

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L.J. Rookie

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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L.J. Rookie

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:)

squirmingitch Veteran

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!!!!!!!!!!!!!!smile.gif 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!tongue.gif

L.J. Rookie

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!!!!!!!!!!!!!!smile.gif 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!tongue.gif

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?) :)

L.J. Rookie

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.. :)

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GFinDC Veteran

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.

Open Original Shared Link

Open Original Shared Link

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)

GottaSki Mentor

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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L.J. Rookie

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.

Open Original Shared Link

Open Original Shared Link

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)

L.J. Rookie

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 :)

L.J. Rookie

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! ;)

LauraB0927 Apprentice

Hi LJ!

I dont have any experience with the DH (although I do have a suspicious growing rash on my fingers, but no blisters) but I wanted to reach out and lend some support. It sounds like you're going through such a tough time but you are getting fantastic advice from others on here who definitely know what they are talking about. I think we all have that initial panic episode where we are terrified to eat - I know I had it. The best advice I have was the advice that was given to me on here - whole foods, no processed foods - stick to the perimeter of the food store. Drink a lot of water and if you have it available to you, grass-fed meats were a god-send to me and are so much easier to digest in our damaged guts. While it might be hard to envision now, it WILL get better with time and obviously gluten free foods. Ask any questions you want and dont be afraid to give details - I think this is the only place where I feel completely free to discuss my bowels without a second thought! Best wishes to you!

L.J. Rookie

Hi LauraB0927!

Hmmm, a growing rash on your fingers sounds *very* familiar in a "not so great way" :(

For me, it started with a rash on my legs--and then a rash on my fingers. After awhile, the "rash" exploded into the blisters. Just something for you to be aware of maybe?

Thank you for your encouragement! Isn't it great that we can talk about "bowel issues" freely and without fear here? It is truly a gift to have found this amazing and supportive site! Thanks for your words of advice! :D

Hi LJ!

I dont have any experience with the DH (although I do have a suspicious growing rash on my fingers, but no blisters) but I wanted to reach out and lend some support. It sounds like you're going through such a tough time but you are getting fantastic advice from others on here who definitely know what they are talking about. I think we all have that initial panic episode where we are terrified to eat - I know I had it. The best advice I have was the advice that was given to me on here - whole foods, no processed foods - stick to the perimeter of the food store. Drink a lot of water and if you have it available to you, grass-fed meats were a god-send to me and are so much easier to digest in our damaged guts. While it might be hard to envision now, it WILL get better with time and obviously gluten free foods. Ask any questions you want and dont be afraid to give details - I think this is the only place where I feel completely free to discuss my bowels without a second thought! Best wishes to you!

GFinDC Veteran

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

Hi L.J.,

You can try anything you want of course. The reason I suggest to people to avoid sugar and carbs at first is because the bacteria in our guts can get kind of out of control with the celiac damage and poor digestion issues. That bacterial overgrowth party often leads to bloating and D. Not fun stuff with a damaged gut that is irritated and hurting.

How about some organic or natural peanut butter with the rice cakes? Or some diabetic version jams? They have those in many stores now. They usually have low or no sugar and some kind of alternative sweetner. Stevia is a natural sweetner you could try, it works for some people but others find it has an aftertaste.

If you aren't having issues with bloating and gas and D you may not need to restrict sugar. The other tricky thing about sugar is it tends to make people have high energy for a while and then crash. That isn't good when you are already fighting fatigue. Coffee and caffeine do the same thing of course. But everyone has their own reactions to foods and what bothers one person may not bother another at all. The only way to know seems to be trying an elimination for a while. Sometimes when people are starting on the gluten-free diet they have reactions to just about everything they eat. But later those food reactions may taper off or disappear when the gut is somewhat healed.

Thanks for asking about my situation. I am doing fine right now. This year was a big turning point for me as far as improvement in health goes. I feel better than in the last 4.5 years since going gluten-free. I still have minor issues here and there but nothing too major or long lasting. It seems when I stray off the whole foods diet I get into problems. I ate some summer sausage not long ago and my feet and legs swelled up pretty bad from that. Probably the nitrates or nitrites in it did that. Guess I can do with out that stuff tho, no problem. :)

I am having some intermittent network issues so may be slow to respond. By the way, did you look at the Mayo clinic site link for the whole table of cross reactive foods? I could only post part of the table on the forum.

squirmingitch Veteran

L.J., I have read here that a lot of people went on the failsafe diet in the beginning b/c of food issues they were having similar to yours. You may want to consider it. Here's a link:

Open Original Shared Link

L.J. Rookie

Hi FP!

Good to know you are feeling better!!! I am beginning to recuperate from my little avocado spree! :) That adventure kicked my arse...I am still taking naps (which I normally don't do) as well as going to bed early. Oh, what an exciting life I live right now! :)

I am on the no gluten, no peanut, no tomotao, and no salt cleansing "eating plan"--The salt was associated with triggering rashes--Thanks to Squirmy, she found the article--and I added it to my eating plan.

The Good News: I *truly* am having fewer rashes--it has been about 2 1/2 days and the rash is less--with (Oh how I say this so quietly :) no new ones in 24 hours. Yay! :D

The Bad News: I cannot get enough calories. I also cannot afford to lose my weight. Any advice with this?

I have to run... I will look forwar to your thoughts--and as always--anyone's thoughts who read this!! :D

Found a few minutes--I have not looked at the Mayo site for cross contamination. I will, but I am most concerned about feeling starved! It is truly because I am not getting enough calories. I have to find a way to add more. While maintaining my "healthy eating" that is pretty restrictive right now!

I like the Diabetic's Jelly & have heard great things about Stevia. He d. is much better--even tried "some probiotics"...and no d.! My body is reacting well to the healthy nonpoisonous foods! :D:)

Just starving...:(

Hi L.J.,

You can try anything you want of course. The reason I suggest to people to avoid sugar and carbs at first is because the bacteria in our guts can get kind of out of control with the celiac damage and poor digestion issues. That bacterial overgrowth party often leads to bloating and D. Not fun stuff with a damaged gut that is irritated and hurting.

How about some organic or natural peanut butter with the rice cakes? Or some diabetic version jams? They have those in many stores now. They usually have low or no sugar and some kind of alternative sweetner. Stevia is a natural sweetner you could try, it works for some people but others find it has an aftertaste.

If you aren't having issues with bloating and gas and D you may not need to restrict sugar. The other tricky thing about sugar is it tends to make people have high energy for a while and then crash. That isn't good when you are already fighting fatigue. Coffee and caffeine do the same thing of course. But everyone has their own reactions to foods and what bothers one person may not bother another at all. The only way to know seems to be trying an elimination for a while. Sometimes when people are starting on the gluten-free diet they have reactions to just about everything they eat. But later those food reactions may taper off or disappear when the gut is somewhat healed.

Thanks for asking about my situation. I am doing fine right now. This year was a big turning point for me as far as improvement in health goes. I feel better than in the last 4.5 years since going gluten-free. I still have minor issues here and there but nothing too major or long lasting. It seems when I stray off the whole foods diet I get into problems. I ate some summer sausage not long ago and my feet and legs swelled up pretty bad from that. Probably the nitrates or nitrites in it did that. Guess I can do with out that stuff tho, no problem. :)

I am having some intermittent network issues so may be slow to respond. By the way, did you look at the Mayo clinic site link for the whole table of cross reactive foods? I could only post part of the table on the forum.

L.J. Rookie

Hi Squirmy!

I am sticking with the one that is no salt, etc...My rash is better (said quietly)--and no d. I am truly going to try to for the two weeks...it is hard in that I need more calories, literally. I mentioned it to GFin, but I am seriously low on calories with no need to lose more weight. I am as low as I want to go. The low salt etc. food plan is helping! But, do you have any suggestions for more calories?

P.S. Thanks for finding that article--salt does seem to trigger the rashes. 24 hours--NO rashes that are new. :):D

L.J., I have read here that a lot of people went on the failsafe diet in the beginning b/c of food issues they were having similar to yours. You may want to consider it. Here's a link:

Open Original Shared Link

GottaSki Mentor

I am on the no gluten, no peanut, no tomotao, and no salt cleansing "eating plan"

I cannot get enough calories. I also cannot afford to lose my weight. Any advice with this?

When suggesting how to increase calories, I generally start with add healthy fats...like avocado - so I'll amend that a bit:

Can you eat nuts? Cashews, Pistachios, Almonds?

Coconut Oil - easy to add to many foods - when I'm low in calorie totals - quite often with my limited diet - I use a bit extra in my vegies and other foods.

Carbs - Potato, Sweet Potato, Rice, gluten-free Pasta

Goodies - gluten-free pancakes, waffles, cake, cookies, muffins and brownies :D - think you may be avoiding sugar, but if you don't need to avoid sweets - eat a few brownies for me ;)

I think I stuck to the "no" list you mentioned - there may be some of these you don't tolerate - hope not.

L.J. Rookie

When suggesting how to increase calories, I generally start with add healthy fats...like avocado - so I'll amend that a bit:

Can you eat nuts? Cashews, Pistachios, Almonds?

Coconut Oil - easy to add to many foods - when I'm low in calorie totals - quite often with my limited diet - I use a bit extra in my vegies and other foods.

Carbs - Potato, Sweet Potato, Rice, gluten-free Pasta

Goodies - gluten-free pancakes, waffles, cake, cookies, muffins and brownies :D - think you may be avoiding sugar, but if you don't need to avoid sweets - eat a few brownies for me ;)

I think I stuck to the "no" list you mentioned - there may be some of these you don't tolerate - hope not.

Hi GottaSki,

Good idea with the potatoes...I have not "tried sweet potatoes"--it is one of the foods I want to add first. I think I can eat white potatoes--definitely eating rice. I cannot eat any cashew, nuts, almonds, or chocolate. etc. I have been trying to avoid sweets for two weeks (at this point--1 week and 2-3 days to go! Then I will be more free to eat more things. But focusing today on rice and may add a potatoe (the low iodine diet I am using says no skin of the potatoe) ... But--I love potatoes...And need more calories. Believe it or not, I have not tried the gluten-free Pasta! It has been a hectic week...and I am not sure what I would put on it. (No tomatoes, No milk/cheese)... I am hoping and feeling positive that once my body mellows out--I will be able to add some more food...More Potatoes & Rice Yummmy :) More food! Yummmy :D

squirmingitch Veteran

No coconut oil ---- iodine. Sorry. That includes olive oil also. But if you can do cashews then you can also do cashew butter! I have cashew butter spread on either rice cakes or on bread in a bowl every morning.

Here's a recipe for bun in a bowl --- I am copying & pasting with my own notes added on the ingredients. I also make a "white bread" version of it --- if you want that recipe then just pm me.

A woman at our local support group told us about a low-carb "bread" that she makes in the microwave. I tried it and thought it was okay and started to experiment a little. This morning, I hit a really great recipe. My 15 yo DD, who is not gluten-free said it was good and asked for more. It reminded me of whole wheat bread - soft, yet grainy in a good way. I'm planning to make some more of these for sandwich buns.

Here's the recipe:

1 large egg (for low iodine use 2 egg whites & no egg yolk)

2 Tbs. brown rice flour (you can sub white rice flour or sweet white rice flour)

1 Tbs. almond meal (you can sub cashew meal)

1 Tbs. golden flax meal

1/2 tsp. baking powder

3/4 tsp. sugar

1/2 tsp. cocoa powder

shake of salt

Spray a custard dish (or any baking dish that will yield a hamburger bun sized "loaf") with non stick spray. Crack egg into dish and stir with a fork until it's well mixed. Add all other ingredients and stir well. Cook in microwave on high for 90 seconds. You'll have to loosen around the edges with a butter knife, but mine came out pretty easily.

I'm using some self-control to wait until lunch time to make another one and create a delicious turkey sandwich.

***************************************************************************************************************************************

The first time I tried this I was so happy to have something that tasted like REAL bread. I sat down on the kitchen floor & stuffed my face! When I finished it, I stood up, made another & gorged myself again. Moaning in ecstasy the entire time.biggrin.gif

Apples with cashew or almond butter on them.

Part of what you're going through is gluten withdrawal. It makes you absolutely RAVENOUS!!!!!!!!!!!!!!!!!! Constantly. It lasted for me about 5 weeks. I had to eat every 20 minutes & was hungry in between!laugh.gif

I was down to 97 lbs. before going gluten-free & I'm just under 5'2". I did not lose any weight when I went gluten-free even though I felt like I was going to waste away. Like you, I felt I wasn't getting enough food or calories. Over 10 months now & I've only put on close to 3 lbs. but am feeling better. Healing takes time. Our guts are ravaged. Only when they heal will we see the true results. I don't expect to get back up to my lifelong normal of 103 lbs. for a while. But I know it will happen. My gut still has healing to do. My entire body still has healing to do. My muscles were wasted. They have just begun to show a little progress very recently. It isn' t much progress & others probably wouldn't even notice the difference to look at me but I can see & feel the minute difference.

Your body is going to need more protein now too so up the protein. Have steak for breakfast! Seriously. Have steak, pan fried potatoes (peel those suckers --- iodine in the skin), bun in a bowl with cashew or almond butter on it & egg whites.

Keep fruit around for the in between times.

I'm very glad to hear the rash is (shhhhhhhh) better. And no D is GOOD!

You can also look in your store or order online ---- Enjoy Life cookies. We have tried several of their varieties & they are very good!tongue.gif They are free of the top 8 allergens so they should be safe for you. They are free of gluten, wheat, dairy, peanuts, tree nuts, egg, soy, fish, shellfish, (eeewwwww - who would want a cookie with fish or shellfish in it? laugh.gif) also made without potato, sesame & sulfites.

squirmingitch Veteran

Ah, slow typist that I am; I see you answered the question about nuts before I finished.

Okay, rice then:

Hubs & I make a stir fry. Get saffron threads (pricey but a little goes a long way) & make saffron rice.

I cut up:

celery

snow peas

leeks

cabbage

chicken breast

sometimes I throw in cauliflower or green beans or green peas whatever have you......

Make a big batch up. It's actually better leftover & makes great snacks when nuked. I just had some for snack!

squirmingitch Veteran

Oh! And I will add a few things here. We seem to do better with safflower oil rather than canola oil. And my hubs is so paranoid about iodine that he doesn't even want a baked potato baked with the skin on so we peel them deeply & I then rub safflower oil on them & proceed to bake as a normal baked potato. It works! Instead of butter on rice or potatoes or veggies we drizzle safflower oil.

You can get some ground pork & use that in egg whites in the morning (b/c sausage has so much STUFF in it). Makes the egg whites go down a lot easier.

GFinDC Veteran

Hi FP!

Good to know you are feeling better!!! I am beginning to recuperate from my little avocado spree! :) That adventure kicked my arse...I am still taking naps (which I normally don't do) as well as going to bed early. Oh, what an exciting life I live right now! :)

I am on the no gluten, no peanut, no tomotao, and no salt cleansing "eating plan"--The salt was associated with triggering rashes--Thanks to Squirmy, she found the article--and I added it to my eating plan.

The Good News: I *truly* am having fewer rashes--it has been about 2 1/2 days and the rash is less--with (Oh how I say this so quietly :) no new ones in 24 hours. Yay! :D

The Bad News: I cannot get enough calories. I also cannot afford to lose my weight. Any advice with this?

I have to run... I will look forwar to your thoughts--and as always--anyone's thoughts who read this!! :D

Found a few minutes--I have not looked at the Mayo site for cross contamination. I will, but I am most concerned about feeling starved! It is truly because I am not getting enough calories. I have to find a way to add more. While maintaining my "healthy eating" that is pretty restrictive right now!

I like the Diabetic's Jelly & have heard great things about Stevia. He d. is much better--even tried "some probiotics"...and no d.! My body is reacting well to the healthy nonpoisonous foods! :D:)

Just starving...:(

Hi L. J,

I don't think you need to avoid all salt. It's the iodized salts that are a problem. Those are usually marked with a "iodized" on the label. Sea salt may not be good either, but any other non-iodized salt would be ok, I think. Squirmy or someone with DH would know better than me tho.

How about meats? Can you eat chicken, beef etc? If you can eat them it would probably help to eat some meat with every meal. Quinoa is good for nutrition also if you can tolerate it. Some people like it fine and others don't same as usual with any food around here.

Mushrooms, onions, and green beans may work too, but I am not sure about the iodine levels in them.

How about other beans? Can you do pinto beans or fava beans or black beans? Black beans seem like one of the easiest to digest for me.

Dinner for breakfast is a good idea, I often do that.

Yesterday I ate fava beans with onion and ham and a little rice.

Today I ate BRM Mighty Tastey Hot Cereal with a little cocoa powder, banana chips (sorry out for you), and a bit of sugar. I won't eat something like that again for several days at least tho. Generally I avoid eating carby foods consecutive days.

I drink plain old water. No coffee or tea usually. I may try the nettle tea that is all the rage on the board lately tho. Got to be trendy sometimes after all! :)

squirmingitch Veteran

You can buy non-iodized salt. it says on the label, "this salt does not supply iodine, a necessary nutrient".

bartfull Rising Star

Actually, sea salt doesn't have much if any iodine either. One would think that it does, but I looked it up when I couldn't tolerate white potatoes because I was LOOKING for a source of iodine. I think there was a thread here recently talking about all of the additives in salt, some of which are not good for us. I get pure sea salt at my healthfood store.

squirmingitch Veteran

Actually the thyca low iodine diet says to avoid sea salt. Quote:

"Iodized salt and sea salt and any foods containing iodized salt or sea salt. Non-iodized salt may be used. For example, Kosher salt is okay unless the label says that it is iodized or sea salt.The reason to avoid sea salt is that all products from the ocean tend to be high in iodine.You can usually find plain, non-iodized salt next to the iodized salt at your grocer. Read the label. (One teaspoon of iodized salt has 400 mcg of iodine.)"

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    • lmemsm
      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
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