Upset, Confused, Venting, Scared & Frustrated

[JustNana]

I was amazed to har that DH can be on your fingers. I remember reading that it's on the trunk and butt. My worst itching is fingers, forearms, even palms. Also tos of feet, shins and scalp. Also butt. :-) I'm starting to think I am getting cc'd or not being as fussy as necessary. My intestinal troubles are almost all gone, but the DH, fatigue and joint pain, especially in my hips is still there.

The DH is much better but it flares up when I can't see the reason. Last night hips were very painful and I took an Alieve and an Ibuprofin. Woke up with awful itching on tops of feet and fingers with tiny blisters.

This forum is not only the best source of information, it also makes me feel "normal" sane and VALIDATED!

[Di2011]

Hi JUstnana,

Have you consider the other things that contribute to our DH problems?

The two most commonly mentioned on here are:

Iodine (Open Original Shared Link)

Salicylates (sals for short): Open Original Shared Link

[squirmingitch]

JustNana, how long have you been gluten-free?

And yes, like Diane says ... iodine & sals. That Aleve & Ibuprofin you took for your hips likely is the reason you woke up with the itching & blisters. I will also mention that sals are cumulative.

I'm getting better everyday since I went low sal soooooooo

[Di2011]

I also believe the sals intake is cumulative. Too much iodine (like eating prawns~~) gives me an almost immediate react but tends to be temporary. The minefield of sals has been harder to navigate. Such a extensive/complex set of foods involved. I now stick with the negligble/low sals list on Open Original Shared Link and try to avoid the depressing idea of what I can't have.

[dani nero]

I'm getting better everyday since I went low sal soooooooo

I'm very happy to hear that :-)

[squirmingitch]

And you Dani, how are you doing?

And me, well, I'm better but sort of in a holding pattern right now. Got to a certain point & then just kind of holding. A few heal & I get a few. At least it's at the point where I can deal with it.

[dani nero]

And you Dani, how are you doing?

And me, well, I'm better but sort of in a holding pattern right now. Got to a certain point & then just kind of holding. A few heal & I get a few. At least it's at the point where I can deal with it.

I've noticed that with celiac it's quite often that healing doesn't happen without comebacks. It's usually better -> stops or comes back but milder -> better, and so on. It resists completely going away until it can no longer be there. Hang in there squirming :-)

I've been ok thanks :-) The DH on my finger healed but the skin has been refusing to become normal.. it's still very dry and it doesn't matter if I put cream on it, but no more blisters.

I got glutened a few days ago but thankfully no blisters.. My finger is just slightly irritated. My scalp and arms are a little itchy but I'm hoping it's just my head being a little paranoid :-)

What have you been eating by the way?

[squirmingitch]

I've noticed that with celiac it's quite often that healing doesn't happen without comebacks. It's usually better -> stops or comes back but milder -> better, and so on. It resists completely going away until it can no longer be there. Hang in there squirming :-)

I've been ok thanks :-) The DH on my finger healed but the skin has been refusing to become normal.. it's still very dry and it doesn't matter if I put cream on it, but no more blisters.

I got glutened a few days ago but thankfully no blisters.. My finger is just slightly irritated. My scalp and arms are a little itchy but I'm hoping it's just my head being a little paranoid :-)

What have you been eating by the way?

I've been doing low sals & getting more iodine. I have documented a true & real correlation to stress & yesterday an event happened that sent my stress levels off the charts. Places that had not completely healed but had not itched for days suddenly became raised, red & itching. Today has been pretty calm & I've had far less itching.

I sure do hope your itchy scalp & arms is all in your head! LOL! I wouldn't wish the scalp lesions on my worst enemy! They are GROSS!!!!!!

[dani nero]

I've been doing low sals & getting more iodine. I have documented a true & real correlation to stress & yesterday an event happened that sent my stress levels off the charts. Places that had not completely healed but had not itched for days suddenly became raised, red & itching. Today has been pretty calm & I've had far less itching.

I sure do hope your itchy scalp & arms is all in your head! LOL! I wouldn't wish the scalp lesions on my worst enemy! They are GROSS!!!!!!

You're having iodine without problems? :-O That is great! Can't wait until I can have seafood again!

[squirmingitch]

Well, I wouldn't say I'm having iodine w/o problems per se. I'm having iodine but not lots of seafood. I have 2, only 2 shrimp, medium sized once a week, having milk & cheese but they are from a local dairy & have less iodine than anything in the grocery store. I had my first WHOLE egg in forever it seems, this week (soft egg on flax toast) & ohhhhhh it was GOOD! I'm eating some yogurt. And there is iodine in almost everything we eat. I'm taking it a bit easy until I find my limit or breaking point. But I feel I'm getting the proper amount of iodine now for health --- just not going nuts on it.

Earlier you asked what I am eating & I realize now that you may have been asking for more detailed. Here goes: Fresh low sal vegetables but I am having some carrots which are in the mid range but I am limiting the amount. Chicken, beef & pork, golden delicious apples, pears, pecans, cashews, sunflower seeds, walnuts, brown rice cakes, cashew butter, sunflower seed butter, rice, potatoes - still eating them w/o skins, leeks, quinoa, Glutino's flax bread, pumpkin seeds, a small amount of sweet potato (med. sals so I limit my intake), milk, cheese. I adore salads & am using the interior leaves to try & limit the sals; I should be eating iceburg lettuce but I simply can't hack the stuff -- it sucks -- so I'm keeping the salads to 2 small ones per week & I put cheese & garbanzo beans (chick peas) in them. Black beans, white acre peas, green peas, green beans. And I had cut out ham b/c of the iodine but am now having ham once a week. Onions, sugar snap peas, celery.

Who says celiacs don't get enough fiber? LOL! I sure am getting it!

[squirmingitch]

A big thank you to those who steered me in the direction of sals! I'm getting better! YAY! The dh is laying down & I'm now down to just a few places that flare up once or twice a day.

I look back & see that I was maxing out on sals. I was eating lots of sweet potatoes, eating raisins, RED apples like crazy, oranges & tangerines everyday & so on & so forth. The coconut oil. Then I added Culturelle b/c it's dairy free so no iodine & it's chickory root --- max. on the sal scale. I was going nuts (pun) on peanut butter & almond butter both --- max. on the sal scale, drinking fruit juices - max. sals, eating pineapple for the digestive enzymes - max. sals. Beer is out so I was drinking red wine --- again, max. sals. Seems I was doing all the right things just in the wrong way. It's like I ran as fast as I could & went splat right into the brick wall of sals.

I now see the error of my ways thanks to you guys & especially to PricklyPear for bringing it to my attention.

[pricklypear1971]

I'm so glad things are improving.

Hopefully as the iga fades you can increase sals.

[squirmingitch]

I'm looking forward to the day I can have my lovely citrus fruits back at least once in a while.

[pricklypear1971]

I'm looking forward to the day I can have my lovely citrus fruits back at least once in a while.

I understand. I'm like that with sushi. Its pretty limited gluten-free, but toss in li and I'm down to sashimi which is basically raw fish.

I can do a little bit of seaweed but not much, and I still get a spot on my arm as a thank you.

[squirmingitch]

One day Prickly, one day, it will happen for both of us --- "the other side".

Now, I have one or two questions so that I don't screw myself up again. I got some Solgar Advanced Multi-Billion Dophilus. the ingredients are:

Open Original Shared Link

And I want to take some L-Glutamine

Open Original Shared Link

Is there anything in these items which stick out to you as being high sal?

[pricklypear1971]

One day Prickly, one day, it will happen for both of us --- "the other side".

Now, I have one or two questions so that I don't screw myself up again. I got some Solgar Advanced Multi-Billion Dophilus. the ingredients are:

Open Original Shared Link

And I want to take some L-Glutamine

Open Original Shared Link

Is there anything in these items which stick out to you as being high sal?

Oh, I'd pm eatmeat or someone else who is better at sals. I get the obvious ones but don't know a thing about supplaments.

[squirmingitch]

Thanks very much. Will do. Nice to know who to go to.

[dani nero]

I am so happy for you Squirming! I hope you'll always be well from now on :-)

Pear thanks for making both of us feel better! I don't know what was going on the past month but I am feeling much better energy-wise and mentally now.

[dani nero]

Well, I wouldn't say I'm having iodine w/o problems per se. I'm having iodine but not lots of seafood. I have 2, only 2 shrimp, medium sized once a week, having milk & cheese but they are from a local dairy & have less iodine than anything in the grocery store. I had my first WHOLE egg in forever it seems, this week (soft egg on flax toast) & ohhhhhh it was GOOD! I'm eating some yogurt. And there is iodine in almost everything we eat. I'm taking it a bit easy until I find my limit or breaking point. But I feel I'm getting the proper amount of iodine now for health --- just not going nuts on it.

Earlier you asked what I am eating & I realize now that you may have been asking for more detailed. Here goes: Fresh low sal vegetables but I am having some carrots which are in the mid range but I am limiting the amount. Chicken, beef & pork, golden delicious apples, pears, pecans, cashews, sunflower seeds, walnuts, brown rice cakes, cashew butter, sunflower seed butter, rice, potatoes - still eating them w/o skins, leeks, quinoa, Glutino's flax bread, pumpkin seeds, a small amount of sweet potato (med. sals so I limit my intake), milk, cheese. I adore salads & am using the interior leaves to try & limit the sals; I should be eating iceburg lettuce but I simply can't hack the stuff -- it sucks -- so I'm keeping the salads to 2 small ones per week & I put cheese & garbanzo beans (chick peas) in them. Black beans, white acre peas, green peas, green beans. And I had cut out ham b/c of the iodine but am now having ham once a week. Onions, sugar snap peas, celery.

Who says celiacs don't get enough fiber? LOL! I sure am getting it!

Yes that was what I meant :-)

Your diet is really high on the yummy factor.. I drooled just by reading it!

I'm thinking about starting with nuts once I'm sure I'm symptom-free.

I'm also eating carrots and sweet potatoes in limited quantities. I was never able to find safflower oil though.

[squirmingitch]

Sunflower oil then Dani? Sunflower oil is low sal. Also Canola oil but sunflower oil is better for you than Canola.

[PDB*DH]

Hi I'm new here. Trying to read as much as I can. I've learned so much from this one thread! Wow! You all have so much knowledge and have so much to share. Thank you so much.

Several years ago I had terrible diarrhea-type episodes (so sorry for the description). Early last year was the worst. I found Heather's Acacia Powder for IBS which I determined that I had been dealing with. It helped with the rush to the bathroom episodes.

I went to one nurse practitioner when I couldn't get in to my regular NP for an extremely burning rash around my neckline. Plus I also had other spots on my thighs. She (the NP) took cultures for bacterial or viral. Almost 2 weeks later I got a call that the cultures were neither.

About 1 week after the 1st NP I went to my regular NP who thought the rash was Urticaria. She even had a physician come in to look at the rash and he "confirmed" urticaria. That was March 1st. Even tho I explained that the blisters were similar to cold sores since I'm prone to them, I didn't get confirmation from the medical "pros". I understand that all physicians are not well versed in skin conditions.

In the meantime I've read as much as I could about what could be causing the rash. "Wheat Belly" was the book that explained exactly what DH is and the blisters I've experienced! I'm self diagnosed with DH. I've been trying to eliminate gluten from my diet. I was doing pretty well but last week had gluten free waffles with coconut oil and organic jam instead of syrup. Holy cow what an eruption event I've had. I initially attributed it to a very stressful week at work.

After reading your posts about salicylates I've done more research and find that coconut oil and jams are probably the culprits! What an eye opener!

Anyway now I find out that the IBS was also tied to gluten.

It's so nice to find this forum and read of your experiences.

Who would have thought that the "natural" way of doing things and eating would be so detrimental to our health! I've eaten gluten all my life so I'm still in the dark as to how this all evolved. I'm trying to eliminate as many things in my environment that can impact my DH. It's not been a pleasant journey but with the knowledge I'm gleaning here I know more of the things to look out for.

Thank you all!

Hugs,

Peg

[Di2011]

Hi I'm new here. Trying to read as much as I can. I've learned so much from this one thread! Wow! You all have so much knowledge and have so much to share. Thank you so much.

Several years ago I had terrible diarrhea-type episodes (so sorry for the description). Early last year was the worst. I found Heather's Acacia Powder for IBS which I determined that I had been dealing with. It helped with the rush to the bathroom episodes.

I went to one nurse practitioner when I couldn't get in to my regular NP for an extremely burning rash around my neckline. Plus I also had other spots on my thighs. She (the NP) took cultures for bacterial or viral. Almost 2 weeks later I got a call that the cultures were neither.

About 1 week after the 1st NP I went to my regular NP who thought the rash was Urticaria. She even had a physician come in to look at the rash and he "confirmed" urticaria. That was March 1st. Even tho I explained that the blisters were similar to cold sores since I'm prone to them, I didn't get confirmation from the medical "pros". I understand that all physicians are not well versed in skin conditions.

In the meantime I've read as much as I could about what could be causing the rash. "Wheat Belly" was the book that explained exactly what DH is and the blisters I've experienced! I'm self diagnosed with DH. I've been trying to eliminate gluten from my diet. I was doing pretty well but last week had gluten free waffles with coconut oil and organic jam instead of syrup. Holy cow what an eruption event I've had. I initially attributed it to a very stressful week at work.

After reading your posts about salicylates I've done more research and find that coconut oil and jams are probably the culprits! What an eye opener!

It's so nice to find this forum and read of your experiences.

Who would have thought that the "natural" way of doing things and eating would be so detrimental to our health! I've eaten gluten all my life so I'm still in the dark as to how this all evolved. I'm trying to eliminate as many things in my environment that can impact my DH. It's not been a pleasant journey but with the knowledge I'm gleaning here I know more of the things to look out for.

Thank you all!

Hugs,

Peg

What a lovely post Peg. So nice that you have joined us (despite the fact that none of us really want this problem). Be sure to ask whatever questions or for any advice that you need.

Di

[dani nero]

Sunflower oil then Dani? Sunflower oil is low sal. Also Canola oil but sunflower oil is better for you than Canola.

Can't believe how easy it is to miss posts! Thanks for the suggestions Squirming!

[dani nero]

Hi I'm new here. Trying to read as much as I can. I've learned so much from this one thread! Wow! You all have so much knowledge and have so much to share. Thank you so much.

Several years ago I had terrible diarrhea-type episodes (so sorry for the description). Early last year was the worst. I found Heather's Acacia Powder for IBS which I determined that I had been dealing with. It helped with the rush to the bathroom episodes.

I went to one nurse practitioner when I couldn't get in to my regular NP for an extremely burning rash around my neckline. Plus I also had other spots on my thighs. She (the NP) took cultures for bacterial or viral. Almost 2 weeks later I got a call that the cultures were neither.

About 1 week after the 1st NP I went to my regular NP who thought the rash was Urticaria. She even had a physician come in to look at the rash and he "confirmed" urticaria. That was March 1st. Even tho I explained that the blisters were similar to cold sores since I'm prone to them, I didn't get confirmation from the medical "pros". I understand that all physicians are not well versed in skin conditions.

In the meantime I've read as much as I could about what could be causing the rash. "Wheat Belly" was the book that explained exactly what DH is and the blisters I've experienced! I'm self diagnosed with DH. I've been trying to eliminate gluten from my diet. I was doing pretty well but last week had gluten free waffles with coconut oil and organic jam instead of syrup. Holy cow what an eruption event I've had. I initially attributed it to a very stressful week at work.

After reading your posts about salicylates I've done more research and find that coconut oil and jams are probably the culprits! What an eye opener!

It's so nice to find this forum and read of your experiences.

Who would have thought that the "natural" way of doing things and eating would be so detrimental to our health! I've eaten gluten all my life so I'm still in the dark as to how this all evolved. I'm trying to eliminate as many things in my environment that can impact my DH. It's not been a pleasant journey but with the knowledge I'm gleaning here I know more of the things to look out for.

Thank you all!

Hugs,

Peg

Glad you found the source of your problem :-) and welcome!

[squirmingitch]

Hi I'm new here. Trying to read as much as I can. I've learned so much from this one thread! Wow! You all have so much knowledge and have so much to share. Thank you so much.

Several years ago I had terrible diarrhea-type episodes (so sorry for the description). Early last year was the worst. I found Heather's Acacia Powder for IBS which I determined that I had been dealing with. It helped with the rush to the bathroom episodes.

I went to one nurse practitioner when I couldn't get in to my regular NP for an extremely burning rash around my neckline. Plus I also had other spots on my thighs. She (the NP) took cultures for bacterial or viral. Almost 2 weeks later I got a call that the cultures were neither.

About 1 week after the 1st NP I went to my regular NP who thought the rash was Urticaria. She even had a physician come in to look at the rash and he "confirmed" urticaria. That was March 1st. Even tho I explained that the blisters were similar to cold sores since I'm prone to them, I didn't get confirmation from the medical "pros". I understand that all physicians are not well versed in skin conditions.

In the meantime I've read as much as I could about what could be causing the rash. "Wheat Belly" was the book that explained exactly what DH is and the blisters I've experienced! I'm self diagnosed with DH. I've been trying to eliminate gluten from my diet. I was doing pretty well but last week had gluten free waffles with coconut oil and organic jam instead of syrup. Holy cow what an eruption event I've had. I initially attributed it to a very stressful week at work.

After reading your posts about salicylates I've done more research and find that coconut oil and jams are probably the culprits! What an eye opener!

Anyway now I find out that the IBS was also tied to gluten.

It's so nice to find this forum and read of your experiences.

Who would have thought that the "natural" way of doing things and eating would be so detrimental to our health! I've eaten gluten all my life so I'm still in the dark as to how this all evolved. I'm trying to eliminate as many things in my environment that can impact my DH. It's not been a pleasant journey but with the knowledge I'm gleaning here I know more of the things to look out for.

Thank you all!

Hugs,

Peg

And Peg...for now ditch the dairy products & also soy. Many celiacs have problems with both in the beginning. Also with dh the dairy is high in iodine & that can make the dh flare or not go away.

Someone please tell Peg about the iodine factor here. I have terrible brain fog & out there right now. Feels like I've been glutened. Will start a thread on it after lunch. Starving --- gotta go.