Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Upset, Confused, Venting, Scared & Frustrated


squirmingitch

Recommended Posts

pricklypear1971 Community Regular

How ironic.

I drank a diet coke earlier today thinking I may be able to tolerate one by now. That was early today before I read or posted.

It wasn't gluten or iodine or anything.

I have a new blister on the back of my neck. After one month with no sores at all.

I sure hope it stops there. No more diet cokes.

And I forgot to mention that sunshine is a disaster for my DH.

Any time my skin is exposed to the sun, I get worse.

Many posts on this in the DH archives.

Just be aware of the sun too. It was hell for me.

Niacin seems to help my sores tremendously. I take the kind that makes you flush and I like the feeling and also think it helps my DH.

Wikipedia says there is a treatment for DH that includes niacin and tetracycline. I told my Dr. I wanted to try it. He said that was fine and prescribed the tetracyline. However, then my DH healed so I didn't actually try it. Yet.

As Randy says..."FFFFUUUUUDDDDGGGEEE!"


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 101
  • Created
  • Last Reply
squirmingitch Veteran

Sorry it has taken me so long to get back to all of you. It was a loooong day. It was not ALL bad though. More on that later. I wish I could reply to each individually but time constraints..... & I'm not the fastest typist in the world.

I haven't even had time to read all the sal links Prickly posted yet. But it's on tomorrow's to-do list. As well as the most recent iodine links she has provided.

I KNOW stress is a huge factor. We have some land that we are going to build on (5 ac.) & we bought it because it literally spoke to our souls. It soothes us, calms us, strokes our inner being. I have noticed that when we go out there that I stop itching. Whatever sores or "bites" I have stop itching. We come back to the rental & I begin to fire up again. We went out there today & the same thing happened. So I know that the stress is having a big effect on me.

The last # of years have been almost a nightmare for us. 3 hurricanes, my best friend in the world dying of cancer, 6 deaths in our families, being stalked for 1 1/2 years, my hubs got cancer & went through 3 yrs. treatment, and the straw that broke these camel's backs was a 68 yr. old man single handedly building a 3 story all frame construction house 11 feet from our house. The problem was that it took him 11 months working from 7 am to dark EVERY single day FOR ELEVEN MONTHS. You can imagine the constant torture of the noise. We begged him to give us 1 day off a week so we could get a break but he refused. Then last year we moved & upon arrival, the rental we had pre-arranged turned out 1 step above something from the movie Deliverance which landed us in a hotel for 5 weeks until we could find another rental. Within 1/2 hr. of our arrival here is when I broke out with the dh covering my entire torso. I actually don't curse that event as it is the reason I discovered I have celiac disease. How many years might it have been before I had an outbreak that slapped me in the face so hard that I had to discover celiac? I could have gone on for years just getting a few little blisters & doing massive damage to my intestines. As it was, it took me 6 months to discover it was dh & therefore celiac.

I know there are people with far, far worse stories than mine. I do not imagine that our life has been the hell that some have gone through. I'm not asking for pity. But I know the stress has brought this out into the open. And I know like I never knew before just how much stress can affect everything about you --- mentally & physically.

I don't eat any processed foods other than I had been using beef boullion once in a while. Otherwise it's pretty much whole foods. Unless you count unsalted organic nut butters as processed. I have been eating brown rice cakes (totally gluten-free & not cc'd). The nuts I got from Nuts.com. I could not find any in the stores around here that did not state they were processed on shared equip. w/ wheat. But I guess the nuts are out now. How in the world am I going to keep from getting the "dropsies" with my blood sugar? Oh well, that's a question for another day.

"The same itchy, bloated, scabby, tired, grouchy, foggy, sleepless, anxious, b%$@#y, shi*ty, tearful and fearful shoes."

IH --- I LOVE the above that you wrote. You nailed it!

You all have such great insight & suggestions & I am taking all of it to heart. You have been there. I will heed your wisdom & benefit from your experience.

And I AM tough IH. And I WILL win eatmeat. And one day I will walk out the other side. Just like others before us. WE will survive!

It's late & I have a lot of "homework" to do tomorrow to learn what my new diet will be.

Goodnight all. Sleep tight & pleasant dreams.

pricklypear1971 Community Regular

Sorry it has taken me so long to get back to all of you. It was a loooong day. It was not ALL bad though. More on that later. I wish I could reply to each individually but time constraints..... & I'm not the fastest typist in the world.

I haven't even had time to read all the sal links Prickly posted yet. But it's on tomorrow's to-do list. As well as the most recent iodine links she has provided.

I KNOW stress is a huge factor. We have some land that we are going to build on (5 ac.) & we bought it because it literally spoke to our souls. It soothes us, calms us, strokes our inner being. I have noticed that when we go out there that I stop itching. Whatever sores or "bites" I have stop itching. We come back to the rental & I begin to fire up again. We went out there today & the same thing happened. So I know that the stress is having a big effect on me.

The last # of years have been almost a nightmare for us. 3 hurricanes, my best friend in the world dying of cancer, 6 deaths in our families, being stalked for 1 1/2 years, my hubs got cancer & went through 3 yrs. treatment, and the straw that broke these camel's backs was a 68 yr. old man single handedly building a 3 story all frame construction house 11 feet from our house. The problem was that it took him 11 months working from 7 am to dark EVERY single day FOR ELEVEN MONTHS. You can imagine the constant torture of the noise. We begged him to give us 1 day off a week so we could get a break but he refused. Then last year we moved & upon arrival, the rental we had pre-arranged turned out 1 step above something from the movie Deliverance which landed us in a hotel for 5 weeks until we could find another rental. Within 1/2 hr. of our arrival here is when I broke out with the dh covering my entire torso. I actually don't curse that event as it is the reason I discovered I have celiac disease. How many years might it have been before I had an outbreak that slapped me in the face so hard that I had to discover celiac? I could have gone on for years just getting a few little blisters & doing massive damage to my intestines. As it was, it took me 6 months to discover it was dh & therefore celiac.

I know there are people with far, far worse stories than mine. I do not imagine that our life has been the hell that some have gone through. I'm not asking for pity. But I know the stress has brought this out into the open. And I know like I never knew before just how much stress can affect everything about you --- mentally & physically.

I don't eat any processed foods other than I had been using beef boullion once in a while. Otherwise it's pretty much whole foods. Unless you count unsalted organic nut butters as processed. I have been eating brown rice cakes (totally gluten-free & not cc'd). The nuts I got from Nuts.com. I could not find any in the stores around here that did not state they were processed on shared equip. w/ wheat. But I guess the nuts are out now. How in the world am I going to keep from getting the "dropsies" with my blood sugar? Oh well, that's a question for another day.

"The same itchy, bloated, scabby, tired, grouchy, foggy, sleepless, anxious, b%$@#y, shi*ty, tearful and fearful shoes."

IH --- I LOVE the above that you wrote. You nailed it!

You all have such great insight & suggestions & I am taking all of it to heart. You have been there. I will heed your wisdom & benefit from your experience.

And I AM tough IH. And I WILL win eatmeat. And one day I will walk out the other side. Just like others before us. WE will survive!

It's late & I have a lot of "homework" to do tomorrow to learn what my new diet will be.

Goodnight all. Sleep tight & pleasant dreams.

Big hug.

Remember, Sals are in lots of things. Natural, good things. You can't eliminate them just reduce them. So try eating what you like, first. And you may find just ONE thing sends you over the edge.

What I sincerely hope is that iodine will be less of a factor of you cut down on the sals.

Di2011 Enthusiast

I had a problem with iodine in the early days (first 6 months or there abouts) but have always had a problem with sals. They are my evil demon as far as my DH is concerned.

I really hope you find what your current problem 'thing' is. It is terribly disheartening isn't it!?!

Now days I eat a fair bit of dairy because it helps my GI issues. I keep my cheese/yogurt intake very standard and that steady intake doesn't effect my DH. Sals do regardless.

dani nero Community Regular

Sorry it has taken me so long to get back to all of you. It was a loooong day. It was not ALL bad though. More on that later. I wish I could reply to each individually but time constraints..... & I'm not the fastest typist in the world.

I haven't even had time to read all the sal links Prickly posted yet. But it's on tomorrow's to-do list. As well as the most recent iodine links she has provided.

I KNOW stress is a huge factor. We have some land that we are going to build on (5 ac.) & we bought it because it literally spoke to our souls. It soothes us, calms us, strokes our inner being. I have noticed that when we go out there that I stop itching. Whatever sores or "bites" I have stop itching. We come back to the rental & I begin to fire up again. We went out there today & the same thing happened. So I know that the stress is having a big effect on me.

The last # of years have been almost a nightmare for us. 3 hurricanes, my best friend in the world dying of cancer, 6 deaths in our families, being stalked for 1 1/2 years, my hubs got cancer & went through 3 yrs. treatment, and the straw that broke these camel's backs was a 68 yr. old man single handedly building a 3 story all frame construction house 11 feet from our house. The problem was that it took him 11 months working from 7 am to dark EVERY single day FOR ELEVEN MONTHS. You can imagine the constant torture of the noise. We begged him to give us 1 day off a week so we could get a break but he refused. Then last year we moved & upon arrival, the rental we had pre-arranged turned out 1 step above something from the movie Deliverance which landed us in a hotel for 5 weeks until we could find another rental. Within 1/2 hr. of our arrival here is when I broke out with the dh covering my entire torso. I actually don't curse that event as it is the reason I discovered I have celiac disease. How many years might it have been before I had an outbreak that slapped me in the face so hard that I had to discover celiac? I could have gone on for years just getting a few little blisters & doing massive damage to my intestines. As it was, it took me 6 months to discover it was dh & therefore celiac.

I know there are people with far, far worse stories than mine. I do not imagine that our life has been the hell that some have gone through. I'm not asking for pity. But I know the stress has brought this out into the open. And I know like I never knew before just how much stress can affect everything about you --- mentally & physically.

I don't eat any processed foods other than I had been using beef boullion once in a while. Otherwise it's pretty much whole foods. Unless you count unsalted organic nut butters as processed. I have been eating brown rice cakes (totally gluten-free & not cc'd). The nuts I got from Nuts.com. I could not find any in the stores around here that did not state they were processed on shared equip. w/ wheat. But I guess the nuts are out now. How in the world am I going to keep from getting the "dropsies" with my blood sugar? Oh well, that's a question for another day.

"The same itchy, bloated, scabby, tired, grouchy, foggy, sleepless, anxious, b%$@#y, shi*ty, tearful and fearful shoes."

IH --- I LOVE the above that you wrote. You nailed it!

You all have such great insight & suggestions & I am taking all of it to heart. You have been there. I will heed your wisdom & benefit from your experience.

And I AM tough IH. And I WILL win eatmeat. And one day I will walk out the other side. Just like others before us. WE will survive!

It's late & I have a lot of "homework" to do tomorrow to learn what my new diet will be.

Goodnight all. Sleep tight & pleasant dreams.

You don't have our pity but you do have our sympathy and support :-) We can all associate with and understand you! I know my rash is not as bad as yours but I still do understand how you feel.

squirmingitch Veteran

Dani, breakfast was not a glass of water. YAY! Low sal: Brown rice cake with sunflower seed butter. If you let the butter sit on the rice cake the moisture will soften it & I believe you will be able to eat it with your sore mouth. AND I had an entire glass of MIIIIIIILLLLLLKKKKKK. Gawd I love dairy!

I found a local dairy who does not use iodine wash before milking but they do use it after but not for cleaning milking equip. & they grow their own feed so no iodine added there. The milk undoubtedly has some iodine but that's okay -- it can't have great amounts. They also makes CHEESES! YAY!

So I'm going back on iodine, at least enough to get over the min. RDA.

Haven't read much on the sal thing yet --- only just waking up, but I think that may very well be my problem. I had been eating a lot of oranges & I WAS eating golden delicious apples till they became not so great quality when I switched to different varieties of red apples.

I'm so happy to see potatoes & carrots are still on the "have" list. I eat a lot of carrots --- organic.

Okay, research today & get going on low sal for now. Then will check out the other factors/foods.

GOOD MORNING everyone! It's a beautiful morning in my eyes. My psyche is doing a happy dance from having a whole glass of milk!biggrin.gif

dani nero Community Regular

Dani, breakfast was not a glass of water. YAY! Low sal: Brown rice cake with sunflower seed butter. If you let the butter sit on the rice cake the moisture will soften it & I believe you will be able to eat it with your sore mouth. AND I had an entire glass of MIIIIIIILLLLLLKKKKKK. Gawd I love dairy!

I found a local dairy who does not use iodine wash before milking but they do use it after but not for cleaning milking equip. & they grow their own feed so no iodine added there. The milk undoubtedly has some iodine but that's okay -- it can't have great amounts. They also makes CHEESES! YAY!

So I'm going back on iodine, at least enough to get over the min. RDA.

Haven't read much on the sal thing yet --- only just waking up, but I think that may very well be my problem. I had been eating a lot of oranges & I WAS eating golden delicious apples till they became not so great quality when I switched to different varieties of red apples.

I'm so happy to see potatoes & carrots are still on the "have" list. I eat a lot of carrots --- organic.

Okay, research today & get going on low sal for now. Then will check out the other factors/foods.

GOOD MORNING everyone! It's a beautiful morning in my eyes. My psyche is doing a happy dance from having a whole glass of milk!biggrin.gif

It's great that you're feeling happy and positive today! I had brown rice with tomato onion soup this morning. My sores are healing and I'm trying to chew away from them haha :-) I'm not sure if boiling fresh tomatoes is ok but I did it anyway. I sadly can't use any legumes so no sunflower butter for me.

How did you make the brown rice cake? :-O I want some! I want anything with the word cake attached to it lol!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

Actually Dani, I was just looking & boiling tomatoes is the only way as canned tomato products are high in sals if you're watching sals --- besides the fact that it would be a processed food. So you done good. But I'm not sure the acidity of tomatoes will go well for your mouth sores but if it doesn't irritate them then go for it!

Oh no, sorry to disappoint you but rice cakes are not like cake at all. They are like puffed rice smushed together & dried so crunchy is the texture & not much taste at all. It's really just something to put the nut butter on.

And you can have sunflower seed butter as sunflower seeds are a seed & not a legume.biggrin.gif

Yes, starting out very positive this morning.smile.gif

IrishHeart Veteran

SQUIRMY GIRL- (hugs for you--the gentle and non-abrasive kind ;) )

I have been "accused" by my pals that I am a "long poster" :lol: --so bear with me ---as this is your Friday morning pep talk. ;)

It is impossible to avoid stress in life...... unless we live like monks (but that would mean no sex or booze and that does not sound very appealing :lol: ) So, we all need to find ways to handle stress. Sounds easy, doesn't it? hahahahaha!

This is NOT easy when our bodies are ill and depleted from celiac. Believe me, I know. :rolleyes:

Your story mimics mine. I already know we are the same age and we have likely had long-simmering celiac for years and it just took the trigger to let this monster loose. It does not matter that "others may have it worse", hon. While that may be true, do not diminish what has happened to YOU because it is significant and has taken a toll. Everyone has a story on here.

Our stories may not be the same in the exact details of life experiences, of course, but the ACCUMULATION of stressors --when they came one at a time were easily handled--- but piled one on top of the other? JUST TOO flippin MUCH. The day my Dad died, I burst into flames. I am not kidding. I was pushed to the wall after years of stressful life events and even though I handled them all, my body was screaming at me with various symptoms. I just kept going. The neurological stuff (the last and worst of the symptoms I have) kicked in and I could no longer force myself to keep going. My body just broke under the weight of it all. My life came to a crashing halt. Not that celiac was a gift by any means, but getting really sick and incapacitated and in burning hell pain?--well, that GOT my attention. Unfortunately, it took so long to figure it out. I lost nearly 4 years of my life to this thing.

All I can say is (as trite as this may sound) take it one day at a time. Heal and nourish your body as best as you can. Know you are on the path to getting well. You have removed the major culprit and the healing is happening. Try to relax into that thought. Once I did that, I stopped fretting so much that the "magic wasn't happening" fast enough. (but it took a few veterans on here to get me to see that part :) )

After all I have been through, I no longer let the daily life-crap thrown at me get me down. Why? Because the worst that could happen--already has. And we survived (hubs and I) :)

Follow the advice of these good women who have successfully dealt with their DH and talk to us anytime and vent. ;)

I suck the life out of every single day now. :lol: Little things I could not do (open a jar, tie my own shoes, walk without gasping for breath, read a paragraph and comprehend it, or multi-task, or even drive my car)-- I can do them again. It took me well over a year to see real progress. I could not walk, sit, stand or lie down without searing pain. This week, I painted my toenails red for the first time in 5 years (whoo hoo!) and I walked 3/4 of a mile on 2 different days and read a book! I cooked a multi-course meal for friends again (my passion) and photographed a sunset. I watched a spectacular sunrise last week --and it was magnificent. Do I still have pain? yes. Am I all better? Nope. But I am not the sick woman I was at all!

These are not monumental events at all, but for someone who is in recovery from the devastating symptoms from celiac, oh baby, it is HUGE! :lol:

I enjoy all the moments, even the ones that are "boring" and seemingly plain.

Too bad it took almost losing my life to drive that home to me.

My point? I know, I know.....get to the damn point, Irish, puleeze, for the love of mike! :lol:

Honey, you are going to be all right in time. Believe it. ;)

Happy Friday ! Cheers, IH

pricklypear1971 Community Regular

Dani, breakfast was not a glass of water. YAY! Low sal: Brown rice cake with sunflower seed butter. If you let the butter sit on the rice cake the moisture will soften it & I believe you will be able to eat it with your sore mouth. AND I had an entire glass of MIIIIIIILLLLLLKKKKKK. Gawd I love dairy!

I found a local dairy who does not use iodine wash before milking but they do use it after but not for cleaning milking equip. & they grow their own feed so no iodine added there. The milk undoubtedly has some iodine but that's okay -- it can't have great amounts. They also makes CHEESES! YAY!

So I'm going back on iodine, at least enough to get over the min. RDA.

Haven't read much on the sal thing yet --- only just waking up, but I think that may very well be my problem. I had been eating a lot of oranges & I WAS eating golden delicious apples till they became not so great quality when I switched to different varieties of red apples.

I'm so happy to see potatoes & carrots are still on the "have" list. I eat a lot of carrots --- organic.

Okay, research today & get going on low sal for now. Then will check out the other factors/foods.

GOOD MORNING everyone! It's a beautiful morning in my eyes. My psyche is doing a happy dance from having a whole glass of milk!biggrin.gif

Well, double yay!

You've inspired me to go to the farmer's market to look for a source of li, raw milk for kefir. I'm trying to make and eat some fermented foods. Hope I don't blow up the kitchen.

Also must find a pork roast for Easter....

Anyway, I'm glad you had a good breakfast and happy Friday!!!

dani nero Community Regular

Actually Dani, I was just looking & boiling tomatoes is the only way as canned tomato products are high in sals if you're watching sals --- besides the fact that it would be a processed food. So you done good. But I'm not sure the acidity of tomatoes will go well for your mouth sores but if it doesn't irritate them then go for it!

Oh no, sorry to disappoint you but rice cakes are not like cake at all. They are like puffed rice smushed together & dried so crunchy is the texture & not much taste at all. It's really just something to put the nut butter on.

And you can have sunflower seed butter as sunflower seeds are a seed & not a legume.biggrin.gif

Yes, starting out very positive this morning.smile.gif

The tomato sauce is a little acidic but not that bad. Swedish tomatoes are also barely sour and filled with water, so they're tolerable. My mouth sores are healing nicely actually. I can't chew directly on them, but they hurt less than my nose and throat. My throat is what's bugging most today.

I think my IQ has dropped dramatically. For some reason I've been categorizing nuts and seeds under legumes ever since I learned about G6PD. I have been confusing things for some time actually, thanks for correcting me, I would have otherwise avoided nuts for god knows how long lol :-)

IrishHeart Veteran

I think my IQ has dropped dramatically.

Your IQ is intact, I assure you! That brain fog, fuzziness, short-term memory lapses and lack of concentration/comprehension--just maddening isn't it?! :blink: Made me nuts.

This, too, will resolve itself. :)

Make sure you guys are getting enough EFAs and a good multivitamin along with probiotics.

Sorry to keep butting into your thread that is mostly about DH...

carry on! xxooIH

dani nero Community Regular

Your IQ is intact, I assure you! That brain fog, fuzziness, short-term memory lapses and lack of concentration/comprehension--just maddening isn't it?! :blink: Made me nuts.

This, too, will resolve itself. :)

Make sure you guys are getting enough EFAs and a good multivitamin along with probiotics.

Sorry to keep butting into your thread that is mostly about DH...

carry on! xxooIH

I would say your but is welcome anytime, but that would sound wrong :-) Can't complain when you're giving advice.

Di2011 Enthusiast

I can't make sense of DH at all, honestly.

There are iodine and sals in everything. Well, at least almost everything. Some people are more sensitive than others - I don't know why.

I'm not sure exactly HOW the iodine interacts with iga - I've heard it described as an activator and necessary, but perhaps it's better descrIbed as an exacerbate?

https://www.celiac.com/articles/177/1/The-Gluten-Intolerance-Group-of-North-America-on-Iodine-and-Dermatitis-Herpetiformis/Page1.html

Open Original Shared Link

I'd switch your focus from iodine to sals and see if that benefits you more. It isn't healthy to withhold iodine for long periods (at least at a near zero level). I cut mine drastically for two weeks only, then started adding back. While I still watch it (wouldn't want to eat a meal like I did at Thanksgibing, again - iodine out my ears) I do believe I'm getting at least 1000 mcg which is the high end for someone with a problem (Hashis/DH).

Coconut AND chocolate are high in sals. Grains can be, also. I don't remember the other new foods you'd added.

I know this is frustrating and painful. Hang in there. Those antibodies will fall eventually.

The real b%$@# about Celiac and particularly DH is that it is so ostracizing. And having a rash makes you so self-conscious and puts you in so much physical pain. I changed everything about my life to accommodate that damn rash. My clothes, my bras, my schedule, my job, my food, my hobbies. EVERY FRICKING THING. It just pisses me off.

It's hard, really hard. I know. It changes everything and then when you think you get a break it screws with you again.

Okay, enough of my vent. I had insomnia last night and feel like I'm hung over. Ugh.

OMFG I've had so many nights like this .. glad we are all getting open and honest. I really is life changing

IrishHeart Veteran

I would say your but is welcome anytime, but that would sound wrong :-)

:lol: ...Your funny bone is showing....

IrishHeart Veteran

TOMATOES (and I think this MAY mean all tomato products?--as I recall when I was avoiding them?) are HIGH in Sals. Just FYI!

There is a food guide here: (prickly may have already posted this one?)

Open Original Shared Link

dani nero Community Regular

TOMATOES (and I think this mean all tomato products--as I recall when I was avoiding them?) are HIGH in Sals. Just FYI!

food guide here: (prickly may have already posted this one?)

Open Original Shared Link

Hmm got confused because the page has fresh tomato under moderate, so I thought making my own soup out of fresh tomatoes would be ok, but I wasn't sure.

pricklypear1971 Community Regular

Hmm got confused because the page has fresh tomato under moderate, so I thought making my own soup out of fresh tomatoes would be ok, but I wasn't sure.

Dani, the one thing to remember is they guides are just that - guides. Some of them say different things, and everyone is sensitive at different levels and to different things. The tricky thing about sals is they are cumulative so you may not see an immediate effect - a high sal food may hit you 2 days later when you hit your body's threshold.

Personally, I'm still suspicious of that mouthwash and gel you were using. They are, I suspect, high sals. You may be ok with most foods but not something strong like that. I sincerely hope so.

Hopeful1950 Explorer

I've been following this lively thread and am now curious about salicylates. My DH is at a stage where it is not completely healed, but way, way better. I am strictly gluten free and have eliminated iodine.

Those of you who know about salicylates...any ideas about something with salicylates that I could eat to do a challenge to see if it has an effect? Aspirin maybe? If so, how much would likely cause a reaction of some kind? I'm thinking that maybe salicylates could be the reason I can't completely heal, but am hesitant to eliminate more foods if I don't have to.

Thanks for any help you can offer.

pricklypear1971 Community Regular

I've been following this lively thread and am now curious about salicylates. My DH is at a stage where it is not completely healed, but way, way better. I am strictly gluten free and have eliminated iodine.

Those of you who know about salicylates...any ideas about something with salicylates that I could eat to do a challenge to see if it has an effect? Aspirin maybe? If so, how much would likely cause a reaction of some kind? I'm thinking that maybe salicylates could be the reason I can't completely heal, but am hesitant to eliminate more foods if I don't have to.

Thanks for any help you can offer.

Follow the links above. They have charts showing high sal foods. Choose one and see? Remember they accumulate so you may not see it immediately.

Everyone is different.

IrishHeart Veteran

Dani, the one thing to remember is they guides are just that - guides. Some of them say different things, and everyone is sensitive at different levels and to different things. The tricky thing about sals is they are cumulative so you may not see an immediate effect - a high sal food may hit you 2 days later when you hit your body's threshold.

ABSOLUTELY TRUE.

Every site has slightly different info (I have noticed) and everyone's tolerance level is different.

That's the tricky part. :unsure:

Same with amines, sulfates, nitrates, MSG, etc. A little may be tolerable, but it is not easy to figure out when the body is saturated. Multiple chemical sensitivities make it even harder. <_<

dani nero Community Regular

Dani, the one thing to remember is they guides are just that - guides. Some of them say different things, and everyone is sensitive at different levels and to different things. The tricky thing about sals is they are cumulative so you may not see an immediate effect - a high sal food may hit you 2 days later when you hit your body's threshold.

Personally, I'm still suspicious of that mouthwash and gel you were using. They are, I suspect, high sals. You may be ok with most foods but not something strong like that. I sincerely hope so.

I agree about the mouth wash and gel. I sadly had another reaction last night though, so I'm thinking the wash was not the only culprit. Probably the same problem as squirmingitch with Sals. If this is really DH.. My nose was so itchy I was about to scratch it off, and my finger was burning with lots of new tiny blisters. The strange thing is that my finger used to itch, but now it only burns, swells and get lots of small dry lines all over it. The only things itching are my scalp, nose, feet and legs. And then this morning the blisters are almost gone, just small bumps remain where they were and agitated skin.

Sorry for redirecting the attention from squirmingitch X(

Hopeful1950 Explorer

Thanks Prickly. I'll go for one of the "High sal" foods and keep everything else the same in my diet and see what happens. Looking at the lists some things that are gluten-free/iodine free that I love are high in sals so could be....

Think I'll wait until Monday because I'm cantoring at church for Palm Sunday and I don't want to be scratching like a monkey up at the altar! :P

pricklypear1971 Community Regular

I agree about the mouth wash and gel. I sadly had another reaction last night though, so I'm thinking the wash was not the only culprit. Probably the same problem as squirmingitch with Sals. If this is really DH.. My nose was so itchy I was about to scratch it off, and my finger was burning with lots of new tiny blisters. The strange thing is that my finger used to itch, but now it only burns, swells and get lots of small dry lines all over it. The only things itching are my scalp, nose, feet and legs. And then this morning the blisters are almost gone, just small bumps remain where they were and agitated skin.

Sorry for redirecting the attention from squirmingitch X(

Sometimes I think it's a chain reaction. Right now your ai system is in overdrive.

You may have to pull all of it waaaay down - gluten, sals, iodine then cautiously add back.

I bet the mouthwash/gel was like the straw that broke the camel's back, though.

Keep the rash lubricated. Find a cream/lotion that is no sal - which will mean synthetic. Sorry. I like Vanicream, if they have it there. Try covering the finger with a band-aid. Irritation just exacerbates skin conditions.

pricklypear1971 Community Regular

Oh, and ice packs. Ice the rash.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,128
    • Most Online (within 30 mins)
      7,748

    Mrs. MaGoo
    Newest Member
    Mrs. MaGoo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Colleen H, I have had similar reactions and symptoms like yours.  I started following the low histamine Autoimmune Protocol diet developed by a doctor with Celiac Disease herself, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, is very helpful in understanding what's going on in the body.   Not only do you have antibodies attacking the body, there are mast cells spreading histamine which causes inflammation.  Foods also contain histamine or act as histamine releasers.  Our bodies have difficulty clearing histamine if there's too much.  Following the low histamine AIP diet allows your body time to clear the excess histamine we're making as part of the autoimmune response, without adding in extra histamine from foods.  High histamine foods include eggs, processed foods and some citrus fruits.  The AIP diet allows meat and vegetables.  No processed meats like sausage, luncheon meats, ham, chicken nuggets, etc. No night shades (potatoes, tomatoes, peppers, eggplant).  No dairy.  No grains.  No rice.  No eggs.  No gluten-free processed foods like gluten free breads and cookies.  No nuts.  No expensive processed gluten-free foods.  Meat and vegetables.  Some fruit. Some fruit, like applesauce, contains high levels of fructose which can cause digestive upsets.  Fructose gets fermented by yeasts in the gastrointestinal tract.  This fermentation can cause gas, bloating and abdominal pain.   The AIP diet changes your microbiome.  Change what you eat and that changes which bacteria live in your gut.  By cutting out carbohydrates from grains and starchy veggies like potatoes, SIBO bacteria get starved out.  Fermenting yeasts get starved out, too.  Healthy bacteria repopulate the gut.   Thiamine Vitamin B 1 helps regulate gut bacteria.  Low thiamine can lead to SIBO and yeast infestation.  Mast cells release histamine more easily when they are low in Thiamine.  Anxiety, depression, and irritability are early symptoms of thiamine insufficiency.  A form of thiamine called Benfotiamine has been shown to promote intestinal healing.   Thiamine works with the seven other B vitamins.  They all need each other to function properly.   Other vitamins and minerals are needed, too.  Vitamin D helps calm and regulate the immune system. Thiamine is needed to turn Vitamin D into an active form.  Thiamine needs magnesium to make life sustaining enzymes.  Taking a B Complex and additional Benfotiamine is beneficial.  The B vitamins are water soluble, easily lost if we're not absorbing nutrients properly as with Celiac Disease.  Since blood tests for B vitamins are notoriously inaccurate, taking a B Complex, Benfotiamine, and magnesium Threonate, and looking for health improvements is a better way to see if you're insufficient.   I do hope you will give the low histamine AIP diet a try.  It really works.
    • Kara S
      Hello, my family is very new to Celiac Disease so forgive me for asking what Warrior Bread is and is there a recipe for it online?
    • jessicafreya
      I'd like to make tamales and wonder if anyone has recs for corn husks free of cross contact for a sensitive celiac little boy. Thks!
    • knitty kitty
      Just wanted to add that checking B12 and Vitamin D only is not going to give an accurate picture of vitamin deficiencies.   B12 Cobalamine needs the seven other B vitamins to work properly.   You can have vitamin deficiency symptoms before the B12 blood level changes to show deficiency.  You can have "normal" B12, but have deficiencies in other B vitamins like Thiamine and Niacin, for which there are no accurate tests. Take a B Complex supplement with all the B vitamins.  Take additional Thiamine B 1 in the form Benfotiamine which has been shown to promote intestinal healing.  Thiamine Mononitrate found in most vitamin supplements is not easy for the body to utilize.  What makes thiamine mononitrate not break down on the shelf also makes it hard for the body to absorb and utilize.  Thiamine and Niacin B 3 deficiency symptoms include anxiety, depression and irritability.  The brain uses more Thiamine than other organs.  Take the B Complex and Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and look for health improvements in the following weeks.
    • knitty kitty
      Hello, @rei.b, Ehlers Danlos syndrome and Celiac Disease can occur together in genetically predisposed individuals.  Losing ones gallbladder is common with celiac disease. I'm glad Naltrexone is helping with your pain.  Naltrexone is known to suppress tTg IgA and tTg IgG production, so it's not surprising that only your DGP IgG and DGP IgA are high.   Have you tried the Autoimmune Protocol diet designed by Dr. Sarah Ballantyne, a Celiac herself?  The AIP diet helps lower inflammation and promotes intestinal healing.   The AIP diet is a Paleo diet that eliminates foods that can cause intestinal inflammation until you heal on the inside, then more foods can be added back in.  The low histamine AIP diet will help reduce inflammation further.   Histamine is released as part of the immune response in celiac disease.  Foods also contain various amounts of histamine or provoke histamine release.  Lowering the amount of histamine from foods helps.  The body, with help from B vitamins, can clear histamine, but if more histamine is consumed than can be cleared, you can stay in an inflammatory state for a long time. Cutting out high histamine foods is beneficial.  Omit night shades which contain alkaloids that add to leaky gut syndrome found with celiac disease.  Night shades include tomatoes, peppers including bell peppers, potatoes and eggplants.  Processed foods like sausages and gluten-free processed products are high in histamines.  All Grains are removed from the diet because they are inflammatory and provoke histamine release. Blood tests for deficiencies in B vitamins are notoriously inaccurate.  You can have vitamin deficiency symptoms before blood levels show a deficiency.  Blood levels do not accurately measure the quantity of B vitamins stored inside the cells where they are utilized.  The brain will order stored vitamins to be released from organs into the blood stream to keep the brain and heart supplied while deficiency occurs inside organs, like the gallbladder.  Gall bladder dysfunction is caused by a deficiency in Thiamine Vitamin B 1 and other B vitamins.   The eight essential B vitamins are water soluble and easily lost with diarrhea and constipation, and the malabsorption and inflammation that occurs with celiac disease.  Because they are water soluble, the body can easily excrete any excess B vitamins in urine.  The best way to see if you are deficient is to take a B Complex and Thiamine in the form Benfotiamine and look for health improvements in the following weeks.  Most B Complex supplements contain Thiamine Mononitrate which is not bioavailable.  The body has a difficult time utilizing thiamine mononitrate because it doesn't break down easily.  Benfotiamine has been shown to promote intestinal healing.   Remember your intestines are in a damaged, permeable state.  Treat them tenderly, like you would a baby until they heal.  You wouldn't feed a baby spicy bell peppers and hard to digest corn and nuts.  Change your diet so your intestines can heal.   I use a combination of B12 Cobalamine, B 6 Pyridoxine, and B1 Benfotiamine for pain.  These three B vitamins have analgesic properties.  They relieve pain better than other otc pain relievers. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.