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mysecretcurse

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mysecretcurse Contributor

:(

This is probably just another pointless rant. But this past week, I've been glutened, seemingly multiple times. I am so confused. Something has changed. I eat pretty much the same diet. One of my products has to have changed.

All I can think is maybe it's the Hershey's special dark chocolate chips I use. I am stupid for continuing using them, as I have read on here that Hershey's refuses to confirm that their ingrediants are all gluten free. But I had been using it as the source for my "chocolate fix" the entire time I've been on the diet (dang, going on 2 years now) and have never had a reaction to it before. Then this past week, I've been having a reaction and now I feel straight up AWFUL.

The thing is, what if it isn't the chocolate and it's something else? I've also eaten a new hot sauce, the pico pica brand, which I thought I was safe. Although I didn't have a legit confirmation, I think I just read someone on the forum saying they used it and it was good.. plus it says contains: soy on the back and I (possibly stupidly) figured if they would tell their customers about soy they would tell them about wheat. I did add another hot sauce into my diet recently as well but its La Victoria and it actually says gluten free on the label so I know its not that.

The other issue is dairy. I am crushed because I think I have to go dairy free now. It seemed I was fine for awhile but now dairy has been bloating me up and causing me terrible amounts of gas and discomfort. I don't drink milk but it seems to happen whenever I eat any sort of ice cream or significant amount of cheese. Sour cream and yogurt are the only two things I havent noticed the terrible reaction from, but I dont even trust them anymore.

I was doing great for awhile. My digestion was perfect, my stomach was not bloated, I gained about 15 pounds and I have a nice body now (I am 5'8'' and have always been freakily skinny, I was 105 before and now I am a healthy 120 with proper curves) and most importantly my skin was clear and I didn't have pain. I get most of my reaction in my face, I get cystic acne (or DH maybe, I dont actually think its "acne")

Ever since this past week I have horrible cysts coming up out of my skin, my stomach is destended and uncomfortable, and I just feel awful.

Besides the dairy, the sauce, the chocolate, all else I can think is some sort of cross contamination. My house isn't a gluten free house as I'm staying with family because I can't find a job. But I check all surfaces for crumbs and clean everything before using it, and I also use mostly my own pots and pans.

I just don't know. What do you guys recommend? Should I do an elimination diet all over again? Start with a basic diet of raw fruits and veggies, meat, and then add things in and see? I've done that so many times and I thought I had FINALLY gotten my diet to a healthy, balanced place with foods I could trust.. and then suddenly it seems like out of nowhere, all my progress is lost.


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Gfresh404 Enthusiast
:(

This is probably just another pointless rant. But this past week, I've been glutened, seemingly multiple times. I am so confused. Something has changed. I eat pretty much the same diet. One of my products has to have changed.

All I can think is maybe it's the Hershey's special dark chocolate chips I use. I am stupid for continuing using them, as I have read on here that Hershey's refuses to confirm that their ingrediants are all gluten free. But I had been using it as the source for my "chocolate fix" the entire time I've been on the diet (dang, going on 2 years now) and have never had a reaction to it before. Then this past week, I've been having a reaction and now I feel straight up AWFUL.

The thing is, what if it isn't the chocolate and it's something else? I've also eaten a new hot sauce, the pico pica brand, which I thought I was safe. Although I didn't have a legit confirmation, I think I just read someone on the forum saying they used it and it was good.. plus it says contains: soy on the back and I (possibly stupidly) figured if they would tell their customers about soy they would tell them about wheat. I did add another hot sauce into my diet recently as well but its La Victoria and it actually says gluten free on the label so I know its not that.

The other issue is dairy. I am crushed because I think I have to go dairy free now. It seemed I was fine for awhile but now dairy has been bloating me up and causing me terrible amounts of gas and discomfort. I don't drink milk but it seems to happen whenever I eat any sort of ice cream or significant amount of cheese. Sour cream and yogurt are the only two things I havent noticed the terrible reaction from, but I dont even trust them anymore.

I was doing great for awhile. My digestion was perfect, my stomach was not bloated, I gained about 15 pounds and I have a nice body now (I am 5'8'' and have always been freakily skinny, I was 105 before and now I am a healthy 120 with proper curves) and most importantly my skin was clear and I didn't have pain. I get most of my reaction in my face, I get cystic acne (or DH maybe, I dont actually think its "acne")

Ever since this past week I have horrible cysts coming up out of my skin, my stomach is destended and uncomfortable, and I just feel awful.

Besides the dairy, the sauce, the chocolate, all else I can think is some sort of cross contamination. My house isn't a gluten free house as I'm staying with family because I can't find a job. But I check all surfaces for crumbs and clean everything before using it, and I also use mostly my own pots and pans.

I just don't know. What do you guys recommend? Should I do an elimination diet all over again? Start with a basic diet of raw fruits and veggies, meat, and then add things in and see? I've done that so many times and I thought I had FINALLY gotten my diet to a healthy, balanced place with foods I could trust.. and then suddenly it seems like out of nowhere, all my progress is lost.

I can certainly understand your frustration. Are you taking any supplements? Have you recently stopped taking any or added any new ones?

Also, if you are having trouble with dairy, probiotics can help with the breakdown of lactose.

The Hershey's dark chocolate is surely to blame. I don't know if you are aware of this but not too long ago they changed the ingredients to include milk. Many people, even non-gluten sensitive individuals become lactose intolerant as they get older: just simply because our bodies stop producing lactase. I'm sure some will disagree with me but, technically we shouldn't really be consuming milk past infancy. The yogurt and sour cream probably don't bother you because the bacteria already have broken down most of the lactose.

If you can, just switch brands of chocolate. All Endangered Species bars of chocolate are certified gluten free and I know for a fact that their dark chocolate does not contain milk.

As for the hot sauce, I'd call the company to confirm its gluten free status. Also, you may have to eliminate it regardless of whether or not it is gluten-free. A lot of hot sauces use vinegars made from gluten containing grains. Even though the gluten is said to be removed during the distillation process, some people are still sensitive to it.

Even if there is risk for cross contamination, I doubt it would be significant enough to cause you this much distress. You don't have to make that many changes to your diet. Just cut out the foods you mentioned, try going dairy free and see how you respond. Then reintroduce the suspected foods one at a time and see how you react. Then when you do have a reaction you know which one is to blame.

mysecretcurse Contributor

:) Thanks for your reply. Sometimes I just need to vent and it helps a lot to be able to come here and talk to people I KNOW understand (as much as my friends and family sympathize with me, they don't fully get it)

You might be right about the vinegar. Vinegar in general bothers me but I figured if the stuff said gluten free they must use vinegar from corn, right? Are they still allowed to say gluten free if it's from wheat and has been distilled?

The only new supplement I started was osteo-bi-flex and a fish oil supplement, both which I confirmed to be gluten free.

My intuition says its the hersheys. :( I am not sure where I could get the brand you mentioned, there isn't much selection around here where I live. I think I am going to definitely give up the dairy too.

You know what else? I was thinking, I don't recall noticing such terrible reactions to dairy before, although Ive never digested it well, but recently I spent 2 months in asia traveling (Ive been back about a month now and having problems since Ive been back although worse recently) and the entire time in asia I ate very little dairy. I had an ice cream a few times, no cheese or milk. Mostly in asia all I ate was fruit, veggies and meat.

My skin was very good, no acne when I was over there besides a tiny bit when I did get accidentally glutened from some fried rice a few times. Maybe coming back and having my diet loaded up on dairy after my body got used to having it is why it seems worse.

Gfresh404 Enthusiast
:) Thanks for your reply. Sometimes I just need to vent and it helps a lot to be able to come here and talk to people I KNOW understand (as much as my friends and family sympathize with me, they don't fully get it)

You might be right about the vinegar. Vinegar in general bothers me but I figured if the stuff said gluten free they must use vinegar from corn, right? Are they still allowed to say gluten free if it's from wheat and has been distilled?

The only new supplement I started was osteo-bi-flex and a fish oil supplement, both which I confirmed to be gluten free.

My intuition says its the hersheys. :( I am not sure where I could get the brand you mentioned, there isn't much selection around here where I live. I think I am going to definitely give up the dairy too.

You know what else? I was thinking, I don't recall noticing such terrible reactions to dairy before, although Ive never digested it well, but recently I spent 2 months in asia traveling (Ive been back about a month now and having problems since Ive been back although worse recently) and the entire time in asia I ate very little dairy. I had an ice cream a few times, no cheese or milk. Mostly in asia all I ate was fruit, veggies and meat.

My skin was very good, no acne when I was over there besides a tiny bit when I did get accidentally glutened from some fried rice a few times. Maybe coming back and having my diet loaded up on dairy after my body got used to having it is why it seems worse.

I know exactly what you mean. My mom is great, I love her and all, and I know she tries to make me feel better, but she just doesn't seem to get it. Same with the majority of my other family members, but at least they're trying.

Yes, I believe they are allowed to market it as gluten-free even if the vinegar is made from wheat or barley.

If there is a health store nearby you, like a Whole Foods or Trader Joe's, I can almost guarantee you that they'll have certified gluten-free and vegan chocolate. So if you can, check there.

Since dairy seems to only bother you occasionally it makes me think that you might not necessarily be lactose intolerant, but you could be lactase deficient. Meaning your body is producing the enzyme needed to breakdown lactose, just not in the sufficient amounts for the quantity of dairy you're currently consuming. So you might not have to completely give up dairy, you could just try going dairy light for a while and see if that works. Here is a list of foods with low/high lactose --> Open Original Shared Link

You also want to make sure that this is not a milk allergy.

One last thing, how long have you been gluten-free? Are you sure your intestines are fully healed enough to be able to handle dairy? Make sure you avoid dairy for a while after accidentally getting glutened too. The inflammation from the gluten could be throwing off the digestion of lactose.

ravenwoodglass Mentor
I spent 2 months in asia traveling (Ive been back about a month now and having problems since Ive been back although worse recently)

In addition to the excellent advice you have already gotten there is one more thing you may want to consider. Since you have been traveling out of the country it would be a good idea to visit your doctor and get stool and blood tests done just to make sure you didn't pick up any kind of a bug over there.

Gfresh404 Enthusiast
In addition to the excellent advice you have already gotten there is one more thing you may want to consider. Since you have been traveling out of the country it would be a good idea to visit your doctor and get stool and blood tests done just to make sure you didn't pick up any kind of a bug over there.

Ravenwood brings up a great point. If you did happen to pick a parasite or bug, that could explain the lactose intolerance.

One my friends went to Africa for a month, picked up a bug that settled in his GI tract and became lactose intolerant for quite some time.

graphite Newbie

Do you have strong chocolate cravings? This is very often associated with low magnesium levels (raw chocolate is very magnesium rich). Things to consider trying, hot bath soak with 2 cups of epsom salts (magnesium sulfate) for at least 10-15 min, followed by a cold shower, a few times a week. Magnesium taurate, citrate or glycinate as a supplement.


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Gfresh404 Enthusiast
Do you have strong chocolate cravings? This is very often associated with low magnesium levels (raw chocolate is very magnesium rich). Things to consider trying, hot bath soak with 2 cups of epsom salts (magnesium sulfate) for at least 10-15 min, followed by a cold shower, a few times a week. Magnesium taurate, citrate or glycinate as a supplement.

Some nuts and legumes are also loaded with magnesium like almonds and cashews.

mysecretcurse Contributor
If there is a health store nearby you, like a Whole Foods or Trader Joe's

Unfortunately there isn't, but it's okay, I couldn't afford it anyway. I will have to learn to live without the chocolate, at least for awhile. It's not like I haven't learned to live without millions of other things, I'm used to it I guess. :blink:

Make sure you avoid dairy for a while after accidentally getting glutened too. The inflammation from the gluten could be throwing off the digestion of lactose.

True, it definitely is worse when I get glutened. SOmetimes its hard to know what's going on. Basically I never digest dairy well, but the bad effects I get from it are nothing like gluten (which just destroys my entire system) and they have never been bad enough to make me stop eating it. I basically bloat up and get gas from it, and if I drink milk, I get zits, but I don't notice any zits from cheese, yogurt or sour cream.

In addition to the excellent advice you have already gotten there is one more thing you may want to consider. Since you have been traveling out of the country it would be a good idea to visit your doctor and get stool and blood tests done just to make sure you didn't pick up any kind of a bug over there.

Oh yeah, well I did get really sick over there and I just finished a parasite cleanse, so I'm doing a lot better now, but that could be part of it, I think my natural good bacteria could be depleted and that is making things worse. I had dysentary and constant D for about 3 weeks at least.. pretty gross, it definitely depleted me... don't drink the water in Cambodia! :o I'm working on eating good pro-biotic foods like kimchi and getting myself back in balance now.

Do you have strong chocolate cravings? This is very often associated with low magnesium levels (raw chocolate is very magnesium rich). Things to consider trying, hot bath soak with 2 cups of epsom salts (magnesium sulfate) for at least 10-15 min, followed by a cold shower, a few times a week. Magnesium taurate, citrate or glycinate as a supplement.

Yes, crazy cravings! I do take a magnesium supplement to help me sleep at night (it works, I dont know why) as well as the baths. Hmm. I don't know. I think it might be more of a mental addiction. I quit cigarettes last month and I had a lot of cravings for rich foods after that. I think it does something to my brains pleasure centers the same way as smoking.

Thanks for the replies everyone! I am feeling better today and haven't had any of that chocolate today, so we will see. I'll probably try a little milk tomorrow and see what it does. But then I'm going dairy free for awhile.

  • 2 weeks later...
mysecretcurse Contributor

AHHHHHHHHHHHHHHHHHH! I could just scream. I'm still being glutened somehow, and still getting fresh lesions on my skin and scalp. :(

I've cut out all dairy and chocolate and pretty much EVERYTHING. I just don't know where it could be coming in. The only 3 new things I've added into my diet are a supplement (osteo-biflex joint care stuff, called the company to confirm Gluten-Free) a Gluten-Free fiber supplement, and a tea that Ive been drinking for years with no reaction but haven't had for a few months. The tea is 100% yerba mate tea, there is no way it could have gluten right?

*screams*

It's SOOO frustrating. Because my reactions are on my face and they last weeks if not months, so each time I feel new lesions coming up it's devastating knowing how long it will be there and that it will leave a scar. :(

GFinDC Veteran
*screams*

Oh, my poor ears! :-)

Only thing I can think of would be to eliminate even the things that are supposed to be safe. Like the tea. Who knows after all? Got to try doing without to really know if it is a problem.

ang1e0251 Contributor

It could be the tea. It does sound like it's something you're ingesting every day. I had reaction to 2 different teas this winter. It was similar to a gluten reaction. Netiher one had gluten but I still felt terrible. The second one had bergamot which I later found out can affect your muscles and joints. I've been off it about 2 months but I still have some problems with my shoulder muscle.

dhd2000 Newbie

The things that cause those horrible DH/acne reactions for me besides gluten are:

iodized salt, corn syrup and ibuprofin. Have you considered any of those? Good luck getting it figured out, I'm miserable when I get them!

Dee in NC

mysecretcurse Contributor

Thanks for the replies.. what I'm trying to figure out is where it could possibly be in the tea? 100% pure yerba mate tea from south america. Gaaahhh.. where would the wheat be? I don't really think it's the tea only for the reason that I was already having issues before I drank it.. but I know by now that anything is possible when it comes to secret wheat being put on something. :(

Sometimes it's frustrating because the skin reaction could just be continuing on from the same glutenings earlier (the chocolate maybe) and when new lesions form I think it's a new glutening. I won't drink the tea, the fiber shakes, or anything else for the next few days and see what happens. So frustrating.

And no iodized salt, I used to do iodine therapy but haven't in awhile due to money issues so its not that..and I dont take pills, not sure about the corn syrup. Haven't had any in awhile at least because I cook my own food from scratch. All else I could think is if sugar is flaring it somehow because I do take a lot of sugar in my tea. Hmm..

wildwood Apprentice
Thanks for the replies.. what I'm trying to figure out is where it could possibly be in the tea? 100% pure yerba mate tea from south america. Gaaahhh.. where would the wheat be? I don't really think it's the tea only for the reason that I was already having issues before I drank it.. but I know by now that anything is possible when it comes to secret wheat being put on something. :(

Sometimes it's frustrating because the skin reaction could just be continuing on from the same glutenings earlier (the chocolate maybe) and when new lesions form I think it's a new glutening. I won't drink the tea, the fiber shakes, or anything else for the next few days and see what happens. So frustrating.

And no iodized salt, I used to do iodine therapy but haven't in awhile due to money issues so its not that..and I dont take pills, not sure about the corn syrup. Haven't had any in awhile at least because I cook my own food from scratch. All else I could think is if sugar is flaring it somehow because I do take a lot of sugar in my tea. Hmm..

When I read this, I remembered I have some Yerba Mate Dark Roast tea in the pantry. Out of curiosity I looked at the ingredients and it contains roasted barley.

TES Newbie

Maybe... the rainbarrel affect. If that is how it works, maybe when you started you did the strict diet and the healing process began, ( the less in your rainbarrel. ) As you added foods that may or may not have gluten, maybe started filling up your rainbarrel until you are full and spilling over (sick) again. I would go back to basics.

mysecretcurse Contributor

I just eat soooo little, and I check everything I eat. I don't get it. :(

I'm on only raw foods again for now.. sucks. Seems that when I fast on raw smoothies is the only time I get better.

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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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