dani nero
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Thanks for posting this Dani. Its an interesting, well written article.
I too have salicylate sensitivity--along with celiac and a few other sensitivities: amines, tannins, and oxalates.
Going off the salicylates nearly two years ago was the first part of this wrinkle in my healing journey--and it measurably made me less jumpy, with legs flailing at night with less pronounced eczema, but it did not do the whole thing. I eventually discovered amines and tannins were giving me migraines, it wasn't all just "CC to gluten.
I am finally am starting to sleep better now that I am detoxing from the oxalates--plus my skin is less red and inflamed (ears and vulva/anal area) with fewer hives. I am taking calcium citrate before my meals as well as eating less oxalates. Further I am taking certain supplements so my body produces less oxalate too.
When I was younger I had a condition that looked very like DH but I am not certain it really was. I had these tiny bumps all over my back and seat plus up on either side at the edge of my face running into my hairline and down either side of my neck. It went away after I stopped being off things in the wheat family--which at the time I thought I just had an allergy to.
However the trace gluten still got me and thus I was frequently sick a lot (for longer than most people) with colds, flu and bronchitis--for which I took lots of herbs, which likely eventually precipitated the full blown salicylate sensitivity. Nevertheless I think the herbs were better than being on antibiotics all the time, like my doctors had prescribed due to my sensitive kidneys. Thing was I became extremely allergic to antibiotics, so it really wasn't much of a choice... Plus testing myself by using a food journal and going on a simplified diet to figure it all out really helped. Thing was that I had far more sensitivities than anyone at the time could really help me with. However rotating my diet and going off the gluten overall was a good choice.
I think maybe there is a spectrum to these skin conditions, eh?
There is no way at this point I am willing to go eat gluten to find out if I have DH or not. Gluten attacks my overall health and even if I just get CC'd too often it starts going after my kidneys as well as my lungs.
I was originally diagnosed with celiac from a doctor formally from the Mayo Clinic after I stopped growing and contracted pneumonia as a 4 month old infant first introduced to grains. Unfortunately I was put back onto gluten when I was five. I kept growing so they thought I was OK--even though suddenly I became a sickly child again whereas I had been very healthy in the interim.
I think if I had not had my system under attack by gluten all those many years I would be less sensitive to all these foods. But here I am. Its much better to know what it is and what to do than continue to suffer is how I look at it. I am not 100% yet, but my skin and nervous system and overall health is getting better all the time. Certainly I don't get sick anymore, which is in large part due to being off all trace gluten--for which I am thankful to this forum for pointing out the need.
Lately going off these other food sensitivities is finally giving me relief from what I call the itchy b%$@#ies. I am certain you can relate! I personally think all these food sensitivities that affect the skin (and some other related systems like the lymphatic and renal systems) indicate a liver that is overwhelmed--so the body uses the skin as an adjunct for the detoxification process. It all seems to start with leaky gut of course. Ouch and itch, eh?
Yolo, I have been thinking about your reply ever since you posted it. You have so many sensitivities! How are you coping? It really can't be easy and I would say I'm sorry you had a tough journey, but I think you're in a happy place now that you're feeling better! Thanks for sharing your story.
I've been very curious about your diet however? Would you mind sharing what you usually eat at a daily basis, and how the supplements you're taking contribute to your low oxalate diet? I'm also curious how you found out about those other sensitivities (aside from the symptoms).
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I even had nightmares at some point about eating glutenous things by mistake or someone making me eat them haha, but I got over it because it eventually happened and it wasn't the end of the world, and I saw that the fear itself was bigger than the actual deal I was scared of. No one wants to get glutened, but keep in mind that you've been training and getting better at this so it's not so easy. Best thing to do is to blame the paranoia before blaming your body for the symptoms, but if they persist and get worse, then blame the body ;-)
Are you anxious due to the paranoia alone however or do you find yourself anxious about other things too? Anxiety can be a side-effect to other intolerances that you don't know about. Have you tried an elimination diet? Sugar and cashews make me agitated and anxious for example. Body can't handle them so reacts by making me a grouch monster ;-)
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Got gluten-symptoms two days ago, and can't figure out why for the life of me. I was careful about what I put in my mouth, the house is 100% gluten-free, and yet here they are.
The only thing that is new is this leave-in conditioning serum which I used for the first time.
I did check the ingredients and nothing indicated that it could contain gluten. It only has sals which I thought would be ok since it's only applied to hair-tips. There is very limited information about it on the product's website and they don't even provide an email address. I'll have to call them, but thought I'd ask if anyone here knows in the meantime.
The Ingredients include:
Cyclopentasiloxane, Dimethiconol, C12-15 Alkyl Benzoate, Benzyl Salicylate, Linalool, Citronellol, Geraniol, Elaeis Guineesis oil/Palm Oil, Shorea Robusta butter/Shorea Robusta Seed Butter, Benzyl Alchohol, Eugenol, Perfume/Fragrance.
So anyone ever used this serum before and know if it's safe? Here's a picture of the product.
Open Original Shared Link
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It would be great to get as many to share their cramp-symptoms as possible. I have constant crams nowadays and it got me thinking, what if they're something else?
For those of you who get constipation, please join in too.
1. Do you get C or D?
2. How long before the cramps begin?
3. Does the pain occur in the same place or can it vary? (upper/lower abdomen and left/right)
4. How many days do the cramps last, and for how long each day?
5. Do you get back-pain? If yes, what type (location, is it movement-induced or constant and stingy?) and for how long?
5. Does muscle and joint soreness occur at the same time, before, after, or throughout?
6. Any specific signs that help you differentiate the cramps from other types of problems? (reflux/ indigestion/ period/ kidney/ gallbladder/ pancreas/ IBS)
I might add more questions later.
Thanks so much for those of you who take the time to share.
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I'm putting this here because I think it might be an interesting read for people who know they're sensitive to sals because of their DH.
The article contains very interesting details about low sals diets and what people would naturally eat if they didn't overdose on fruits and high sals veggies.
I never thought that a high fruit diet could ever hurt anyone until I experienced it first hand!
Open Original Shared Link
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I wonder if it's possible you're having a mild case of indigestion. I don't know if it's possible to have one without the burning sensation and/or pain. Do you get bloated at all shortly after eating? Does this happen no matter what type of food you eat or just the bread? Might be a certain food that is giving indigestion.
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First time I hear of an appetite decrease :-) The usual is the opposite, but then again there is no such thing as the "norm" when it comes to celiac as Bunnie mentioned. Make sure you try to eat well though even if you don't feel like it, because eating too little might backfire later.
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Not what I was hoping to hear, but thanks for your feedback. I appreciate it :-)
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I ate oats by accident last week by buying cookies from a gluten-free bakery. I ate some without checking the ingredients because I was oh so happy I could walk into a bakery and actually eat something from it haha :-)
Anyway I got gluten-symptoms but a little less severe.
And then yesterday, as I was cleaning my kitchen, a bag of gluten-free oat flower released a cloud into the air by accident and I think I might have breathed some in. Now I'm having mild symptoms again but I'm not sure it's the oats because I did also try a new brand of frozen potatoes (spiced).
My question is:
Has anyone ever had a reaction from microscopic (trace) amounts of oats just like it is with gluten? If I react to oats, does that mean that I have to watch out even for trace amounts? I would hate to think that I have to, because I can hardly eat anything as it is!
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Will do on the recipes Dani. May take me a while though. The brand I use is called Stevia in the Raw. I know some people don't like the taste of stevia,. It seems fine to me but my cousin thinks it is yucky.. Another sweetner people say is healthy is agave syrup. It is made from the cactus.
The beeswax can help to harden the chocolate or any candy for that matter. You have to be careful not to add much of it though or it kills the flavor.
Thanks GFinDC.. I sadly couldn't find any bee wax.. and from what I read milk powder can be used to make hard milk chocolate, but I couldn't find a coconut milk powder or any substitute in powder form without additives that I don't want.
I have some coconut cream in a piece of cloth to drain the water out of it overnight but don't know how that will work.
I'm thinking of experimenting with hardened caramelized honey next. I'm thinking of grinding it after it hardens which will help produce a more firm dark chocolate.
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New update, I made the above recipes again but replaced the coconut oil with coconut butter, and the results were very promising! It's almost like normal chocolate now and even tempering the chocolate that is made with coconut butter is creamy and shiny :-)
It is however still not quite the same as regular chocolate, so I decided to move on to cocoa butter!
Coconut cream is am amazing substitute for dairy too by the way. It hardens when it's cold and is quite yummy.
As for sweetening I'm using semi-hard honey. I think I'm going to try harder varieties next to see if they work better.
Today I made chocolate truffles with hazelnut-chocolate ganache, and middle layer of caramelized honey covered hazelnut crumbs and covered with dark chocolate from the outside :-) I hope they'll be as yummy as they are healthy!
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I have the same reaction to stevia, have not yet found one to my liking. I have been thinking about learning how to bake with it. Thus far, I have been baking with honey and maple syrup and occasionally agave nectar.
I've read in one of the recipes that NuNaturals's vanilla stevia Open Original Shared Link is good. I can't get some though because shipping costs a ton :-)
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This one isn't really candy chocolate recipe but I thought it was very interesting since it's made creamy using avocados :-)
Open Original Shared Link
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Just a little update, I tried making the coconut oil and cocoa powder recipe and it did not meet with my liking. It wasn't creamy at all, and swallowing it made my throat feel like it was coated with oil. I'm never making that one again.
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Here's yet another recipe
Open Original Shared Link
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My understanding is that Stevia makes chocolate 'seize' unless done exactly right, so you might want to avoid that. As far as I know that's the only zero-calorie natural sweetener out there. You are correct about honey, it is one of the best, most healthy options available for sweetener.
I have been buying 'york peppermint patties' from Trader Joe's that are made with honey. I purposefully haven't had one so that I don't get addicted to them, but hubby says they are AMAZING, so adding honey to chocolate makes a good flavor apparently!
It might be worth the effort to get it right with stevia but the problem is that I wasn't able to find a brand that doesn't taste like burnt chemicals ;-( Which ones do you use?
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Thanks for the links Dani. I might try this with carob and stevia. I am not sure the coconut oil will work for me though. Got to experiment to find out I guess. I made something similar using beeswax and stevia a while back. You don't need very much beeswax to harden a candy. I am not sure of if there are any health issues with beeswax though.
There are some ideas on safe chocolate in this thread below.
Chocolate What chocolate do super sensitives tolerate best
You're very welcome!
Please add your recipes if you develop a yummy one!
I tried to use stevia and the brands I got tasted repulsive :-O What type do you use? Can I buy it online? And honey wax sounds amazing! Since it's natural I'm positive it's healthy ;-)
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Just wondering why sugar is no good but honey is okay? Sucrose is glucose + fructose, and honey is full of fructose, which signals your liver to make fat, so you're not gaining any health benefits by substituting honey for normal table sugar.
I don't measure health by fattening factors. Honey naturally contains some minerals and enzymes, and since it's not processed it is absorbed by the body at a slower rate. In my culture honey is used as a natural remedy. Normal sugar is a processed product and contains nothing. Even if both are fattening the difference between the two to me is like earth and sky :-) Do you have suggestions for something else? I would gladly exchange honey for something else that is natural and healthy with less calories :-D
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I just discovered I might be a chocoholic, and the chocolates at the stores are incredibly unhealthy as they contain tons of sugar, unhealthy fats, as well as soy and preservatives. I can't do dairy, soy, or sugar to begin with, so I decided to learn how to make my own chocolate with coconut milk, cocoa powder, and honey... I don't know what sort of fat to use.. maybe coconut oil?
I was wondering if anyone has any experience with making such treats and if you're willing to share any tips :-) Just that the ingredients have to be healthy!
So far I found a few pages that I'm going to use as a starting point.
In case anyone else wants to make chocolate, and here are the links:
Open Original Shared Link
Open Original Shared Link
Open Original Shared Link
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It is hard to explain to people who never heard of Celiac the concept it cc.. it is always far fetched that an atom of gluten has an effect.
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Rash means that you react more to gluten than you believed you did
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There is nothing difficult about explaining Celiac if the guy you are dating is smart, caring and open-minded
Salicylate Sensitivity/ Intolerance Article
in Dermatitis Herpetiformis
Posted
Celiac messes with our gut's natural balance so all those weird sensitivities and intolerances are caused by years of eating damaging foods we could not tolerate. Such a sad thing that most of us always thought it was the other way around.. that the side effects were the cause, and then we tried fixing the side effects but end up causing new intolerances as a result.
I wasn't too sensitive to sals until I unknowingly went on an all sals diet for months.. thinking fruits and veggies were my friends haha :-) I have learned how to love my supplements now.