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Need To Vent About My Symptoms
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Sorry, I have to vent about something here.

I NEVER know when I've been glutened, or by what.

I just feel really great one week, then really crappy the next. My symptoms "sneak up" on me by being really light and ignorable at first, then being really intolerable, and they seem to be delayed and also last for weeks at a time. I've been gluten-free and soya-free with no cheating for over a year now, and going on six months dairy-free as well. I haven't pinpointed any other foods that are likely to be causing me trouble, despite going on a string of elimination-type diets when I first moved to Ireland.

all I know is for the past two weeks my reflux is back to pre-gluten free intensity, even though I'd kicked it completely to the kerb for several weeks if not a month before this. I am having a terrible headache for two weeks, and today I have muscle aches in all my major muscles. Very tired, low energy, not getting anything useful done, that kind of thing. Feel like bursting into tears at random intervals (but don't) and generally get very frustrated at everything.

I have NO IDEA if I was "glutened" or "casein'd" or what. I know when I've had soya because I become inexpliably and self-harmingly depressed over the course of several hours and then wake up fine the next morning. I've tracked this reaction down to specific foods and even soaps. However, I can NEVER figure out where the other symptoms originate from, only that they must be related to celiac because they come and go in that way.

I don't think I'm super-senstitive, but I often act like I am just in case. I was doing fine with labeled gluten-free things for the past few weeks (had genius bread every day when my reflux was gone), but I've cut those things out for the time being trying to recover. I only eat out at two or three restaurants that I trust (and were vetted by other celiacs). I have been lax about hand- and grocery-washing recently, so I'll step up the vigilance there I guess. Seems stupid to have to wash everything, even jars and packets, when you get home, but there is often flour on the conveyor belts at the grocery store.

I hate feeling this way. It makes me feel like a hypochondriac because my symptoms aren't so severe that I can legit take a break, just that I ahve to do my normal routine anyway while feeling crappy. I would actually prefer vomiting as a symptom. Easier to track when the gluten came in. But for someone prone to headaches, how do you track when the reallyreally bad headache started from the kinda bad headache? For someone with a generally low energy level, how do you see when low energy became NO energy? it's not obvious.

I only eat whole foods and packaged gluten-free foods that legally here have to be less than 20 ppm. well, that and skittles. but I'm trying to give those up too.

thanks if you've read this so far. I have a related question. I've seen people have delayed reactions of 48 hrs. Does anyone have delayed reactions of 3 or 4 days?

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Sorry, I have to vent about something here.

I NEVER know when I've been glutened, or by what.

I just feel really great one week, then really crappy the next. My symptoms "sneak up" on me by being really light and ignorable at first, then being really intolerable, and they seem to be delayed and also last for weeks at a time. I've been gluten-free and soya-free with no cheating for over a year now, and going on six months dairy-free as well. I haven't pinpointed any other foods that are likely to be causing me trouble, despite going on a string of elimination-type diets when I first moved to Ireland.

all I know is for the past two weeks my reflux is back to pre-gluten free intensity, even though I'd kicked it completely to the kerb for several weeks if not a month before this. I am having a terrible headache for two weeks, and today I have muscle aches in all my major muscles. Very tired, low energy, not getting anything useful done, that kind of thing. Feel like bursting into tears at random intervals (but don't) and generally get very frustrated at everything.

I have NO IDEA if I was "glutened" or "casein'd" or what. I know when I've had soya because I become inexpliably and self-harmingly depressed over the course of several hours and then wake up fine the next morning. I've tracked this reaction down to specific foods and even soaps. However, I can NEVER figure out where the other symptoms originate from, only that they must be related to celiac because they come and go in that way.

I don't think I'm super-senstitive, but I often act like I am just in case. I was doing fine with labeled gluten-free things for the past few weeks (had genius bread every day when my reflux was gone), but I've cut those things out for the time being trying to recover. I only eat out at two or three restaurants that I trust (and were vetted by other celiacs). I have been lax about hand- and grocery-washing recently, so I'll step up the vigilance there I guess. Seems stupid to have to wash everything, even jars and packets, when you get home, but there is often flour on the conveyor belts at the grocery store.

I hate feeling this way. It makes me feel like a hypochondriac because my symptoms aren't so severe that I can legit take a break, just that I ahve to do my normal routine anyway while feeling crappy. I would actually prefer vomiting as a symptom. Easier to track when the gluten came in. But for someone prone to headaches, how do you track when the reallyreally bad headache started from the kinda bad headache? For someone with a generally low energy level, how do you see when low energy became NO energy? it's not obvious.

I only eat whole foods and packaged gluten-free foods that legally here have to be less than 20 ppm. well, that and skittles. but I'm trying to give those up too.

thanks if you've read this so far. I have a related question. I've seen people have delayed reactions of 48 hrs. Does anyone have delayed reactions of 3 or 4 days?

I can relate. I've been gluten-free since November. Even before that my symptoms have always been sporadic. I'll have a week of feeling fantastic and think I've finally figured this thing out and then the next week I'm back to feeling like junk. My doc told me to keep in mind that not everything I feel can be attributed to food intolerance. She said that hormones likely also play a role as does diet and exercise. I do find now that my symptoms appear most at regular intervals.

As for diet, I find I feel best when I get enough protein and I'm also taking 500mg magnesium (helped with headaches and muscle aches), 2000 mg D3 (helped with fatigue) and 100mg B12 (helped aches). What type of supplements are you taking? Have you had your iron, ferritin, and D checked lately?

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8 months ago my iron was low, vit D low, and b12 high. I supplement vit D and iron as well as magnesium, zinc, and folic acid. and cod liver oil and probiotics as well.

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Honestly I haven't done the whole diet thing...but from a mental point of view, stress can trigger symptoms. All this different dieting, wondering and keeping track of yourself has to create some stress.

I know when I'm stressed my eczema appears and gets pretty bad, for once example.

Stress is probably only one meager part of it, but it's a good part to really look at.

And I can relate to your headache issues and no energy. I haven't been able to find out what I can do to fix that for myself. I hope to get b12 shots, I recommend that for you as well, since it's straight into your blood system. The headache part I can't help with, mine aren't from gluten allergy but from a spine issue.

Good luck!

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Hi Strawberry

I've been puzzling myself about exactly the sort of problems you describe in your post. I have been gluten and dairy free for 6 months. no cheating, mainly whole foods, just a few packaged gluten free products, grain-lite, no eating out. I am suspicious of soya, thinking it may add to my headaches and joint/muscle aches, but can't be sure. I am also suspicious of coconut, but can't be sure. I wash my hands before preparing or eating, take care to eat or drink from clean places/cups, won't have gluten cooked in the kitchen, but have to allow some bread and gluten treats for my gluten eaters, which I no longer touch.

When I am "clean" after a few weeks of eating wholefoods, with very, very few gluten-free products, I am less tired, ache less including my head, and my digestive system works ok, albeit very sluggishly, and my nausea disappears. When I am really clean, my appetite returns suddenly with a vengence. This happened to me at the weekend (its not the first time) and I was so hungry, even after my usual healthy meal, that I kept going back to the cupboard all day long, and the following day too. I ate my whole stock of trusted gluten-free products (not large, but much more in 2 days than I've eaten in a normal month....). I also ate a small meal out at a trusted place, along with a very rare half a glass of wine. By Monday afternoon I had a headache, am really tired, and my shoulders and arms ache badly. And my face burn is back.

Although I don't think I have helped myself by including a little soy and coconut in my binge, my main suspicion lies with a build up of gluten by eating too many gluten-free products over the last few days. The main reason I suspect this is the change in my digestion. Over the weekend I got really bad smelly gas, some abdominal discomfort and a much, much faster transit time (sorry TMI). I'm pretty sure this is a gluten reaction for me. That reaction is starting to ease off, but the aches and tiredness haven't yet. That seems to take weeks to settle down.

To complicate matters further, I have another sort of reaction, which is an allergy-type reaction to airborne gluten. Whiffs of cooked or moist gluten triggers immediate burning sinuses and my head starts to swim and feel weird, followed very soon after by prickling feelings in my lower abdomen, followed later by abdominal pain and a migraine if I get too large a dose. I had a mild reaction to having to sit too close to plates of moist cookies and cupcakes at a series of meetings last week, so I can't entirely rule out either a delayed reaction to this exposure, or to that exposure adding to the trace gluten load from my gluten free product binge over the weekend.

It is a puzzle, and I would be thrilled to identify a trigger other than tiny amounts of gluten. Having to worry about tiny amounts of gluten contamination is not somewhere I am in a hurry to go. Particularly, as you say, it does not neccessarily lay you flat out, it just makes you feel miserable and lacking in energy.

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I'm in the same boat with you. I've cut out gluten, soy, dairy, peanuts, and MSG. When I had a rescope at the 6 months gluten-free mark it showed no healing and the Dr. said maybe refractory sprue..or Whippe's disease?

I was sent to the Mayo clinic in Florida. They did an extended scope that reaches farther down and said I don't have Whipple's disease, and they saw more eosinophils than T-lymphocyes, which would suggest a food allergy or intolerance rather than refractory sprue.

They have referred me to the Mayo Clinic in MN.

I've been tested for 98 allergies via pin prick, and by blood for the main 8 allergens. Nothing showed up.

I keep a food log and have no idea what I could be reacting to. I've looked at oxylates and salicylates..it just doesn't seem like I can connect any dots and figure this out?

I completely understand your frustration!

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I just feel really great one week, then really crappy the next. My symptoms "sneak up" on me by being really light and ignorable at first, then being really intolerable, and they seem to be delayed and also last for weeks at a time. I've been gluten-free and soya-free with no cheating for over a year now, and going on six months dairy-free as well. I haven't pinpointed any other foods that are likely to be causing me trouble, despite going on a string of elimination-type diets when I first moved to Ireland.

I'm sorry you feel so crappy, Strawberry, and hope you feel better soon.

Are you sure you're completely dairy free? I seem to recall that you ate an entire tin of Betty Crocker icing this weekend, which would make a lot of us sick.

Edit: Yes, symptoms can be delayed for 3 to 4 days.

Edited by sa1937
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"As for diet, I find I feel best when I get enough protein and I'm also taking 500mg magnesium (helped with headaches and muscle aches), 2000 mg D3 (helped with fatigue) and 100mg B12 (helped aches)."

Completely agree with this. I've had to completely rebalance my diet towards protein, particularly oily fish, and go grain-lite. I supplement with B vits, calcium, magnesium, D3, iron with C, probiotics and digestive enzymes. For me the most helpful were digestive enzymes (they helped signficantly with fat malabsorbtion), and probiotics. I think the B vits are also helping. I can't say I noticed a difference with D, which I started taking earlier than the others.

I've had no tests for any of this, and have just been following advice on this board and listening to what feels right for my body. Right now it would rather be at home in bed, rather than trying to focus at my computer.

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I seem to recall that you ate an entire tin of Betty Crocker icing this weekend

Yes, you did tell us about that icing binge. :)

That stuff is loaded with SOY.... and SUGAR.. and corn syrup and God knows what else..

That would make me feel pretty sick for a few days.

Gluten CC keeps me sick for 2 weeks :blink:

But, remember symptoms come and go while healing a ravaged gut.

Many people are quick to blame "an accumulation of trace gluten" from gluten-free foods for their continuing symptoms, but sometimes it is slow gut healing. The only way to know is to go to a REAL CLEAN WHOLE FOODS diet for a few weeks --which means PLAIN vegs, fruits, meats, nuts and eggs. Period. NOTHING from a package or can.

Everything we read about celiac disease says the same thing--"may take 6 months to 2 years or LONGER" for the gut lining to heal.

It's difficult to be patient and avoid problem foods like dairy and soy, I know, but that is all we have in the way of real recovery.

Hope you feel better soon.

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I'm sorry you feel so crappy, Strawberry, and hope you feel better soon.

Are you sure you're completely dairy free? I seem to recall that you ate an entire tin of Betty Crocker icing this weekend, which would make a lot of us sick.

Edit: Yes, symptoms can be delayed for 3 to 4 days.

I was going to say that, too. In the US, The icing seems to have soy in every flavor and sometimes milk. Even without soy or milk, its possible eating something like that in one day would upset the balance for a few days.

I find that if I eat something I don't usually eat a little bit is OK. Alot at once or some over several days can leave me feeling off digestive-wise.

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sorry y'all. I don't live in the US. The icing had no soya ingredients; just vegetable oil which in Europe means rapeseed oil. If the icing was full of soya or soya oil, I'd've killed myself after eating a whole tin. :unsure:

It also said "may contain milk ingredients" which I THINK means it may be cross-contaminated, since the listed ingredients weren't milk-based?

It's day 3 or 4 after eating it, which I admit was a HUGE mistake--and I can accept that some of my problems now are caused by it, but that doesn't explain the week of feeling crap and reflux BEFORE I ate it...

I didn't think I was super-sensitive to dairy, however. as in, shared lines and all taht being a problem. I was eating litres of ice cream with only minor symptoms only six months ago... TT_TT

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Sometimes I just get "off". If we ate like my dog, we would know we got the right amount of fiber, proteins, sugar, etc everyday. And it would be the same everyday. But we eat different things and sometimes it isn't the most balanced each day. Somedays we get more fat or less fiber, etc. It can get our system out of whack.

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Perhaps if you gave up all packaged foods for awhile and see if that makes a difference. I personally liken packaged foods to eating out. There's always a chance for some type of contamination that is out of your control. Just a thought.

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Jam,

I just started eating more foods than I had been for 3 years and some days, it is just "too much" for me to handle.

Not gluten, dairy or soy in them and not packaged gluten-free stuff either---whole food.

For example, I had grapefruit, mango and mahi-mahi (fish) yesterday and I haven't had any of those items since 2007. Also, I had champagne the night before (not something I do every day :lol: ) and I have been drinking more coffee.

I'm a little "off" today in the gut---I know it is not gluten of course, but it could just be more than my system can handle all at once.

It could explain some re-emergence of symptoms in you?

(just thinking out loud with you)

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Here's some more venting... on Saturday I was feeling great, had lots of energy, went out to the park, did some climbing and cycling and picture-taking. Cleaned my flat. exercised. did some gluten-free baking.

then on Sunday I ate food as usual, nothing special, slept in, did some art during the day, stayed in. Was surprised by a sudden onslaught of watery D, depressive thoughts. My whole body started throbbing and I had sudden urge to sleep. Slept for 4 hrs, got up, still depressed, went back to bed with sleep medication until morning.

today I'm having bad headache, upset stomach, D (but not as bad), muscles more sore than usual after a workout. mood is generally ok but my physical addiction to pain is back and causing me problems. luckily I'm very sore from my workout/climbing over the weekend and can use that to satiate myself rather than actually causing damage to myself.

found white powder in the grocery bag with my buckwheat flour but it's more likely that it was leaked buckwheat flour and not some mysterious celiac-anthrax.

no idea what happened, no idea if it was something I ate. been cutting back on gluten-free processed foods this week, replaced my morning skittles with blueberries, main source of food this week is bananas, rice, eggs, canned fish and veg, and a GAPS-inspired homemade veg soup with homemade beef stock. And some brownies from the mix Gemini so graciously sent me.

That's celiac for me. Feeling good then feeling sh*te with no dietary change accounting for it.

been gluten-free one year. I only had symptoms for one year before diagnosis so I wasn't misdiagnosed for ages with tons of damage going on. I'm young and otherwise quite healthy.

I effing hate celiac.

peace.

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Here's some more venting... on Saturday I was feeling great, had lots of energy, went out to the park, did some climbing and cycling and picture-taking. Cleaned my flat. exercised. did some gluten-free baking.

then on Sunday I ate food as usual, nothing special, slept in, did some art during the day, stayed in. Was surprised by a sudden onslaught of watery D, depressive thoughts. My whole body started throbbing and I had sudden urge to sleep. Slept for 4 hrs, got up, still depressed, went back to bed with sleep medication until morning.

today I'm having bad headache, upset stomach, D (but not as bad), muscles more sore than usual after a workout. mood is generally ok but my physical addiction to pain is back and causing me problems. luckily I'm very sore from my workout/climbing over the weekend and can use that to satiate myself rather than actually causing damage to myself.

found white powder in the grocery bag with my buckwheat flour but it's more likely that it was leaked buckwheat flour and not some mysterious celiac-anthrax.

no idea what happened, no idea if it was something I ate. been cutting back on gluten-free processed foods this week, replaced my morning skittles with blueberries, main source of food this week is bananas, rice, eggs, canned fish and veg, and a GAPS-inspired homemade veg soup with homemade beef stock. And some brownies from the mix Gemini so graciously sent me.

That's celiac for me. Feeling good then feeling sh*te with no dietary change accounting for it.

been gluten-free one year. I only had symptoms for one year before diagnosis so I wasn't misdiagnosed for ages with tons of damage going on. I'm young and otherwise quite healthy.

I effing hate celiac.

peace.

Really sorry you're feeling poorly :-( Xoxoxo

Maybe it was CC at a public place.. You were out at the park, and someone (maybe a child with a biscuit or a sandwich) and touched a spot before you did.

This is something that we risk every time we leave the house, but we live with this imperfection in our lives because otherwise we won't be able to have lives.

I really hope for your fast recovery so you can go hiking and taking photos again :-) What kind of art do you do by the way?

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What kind of art do you do by the way?

Oh, I draw cartoons and comics. Nothing special. I was making gift-art for people over the weekend--as in, people who can't draw were requesting that I draw their fictional characters for them, that kind of thing.

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Sorry, I have to vent about something here.

I NEVER know when I've been glutened, or by what.

I just feel really great one week, then really crappy the next. My symptoms "sneak up" on me by being really light and ignorable at first, then being really intolerable, and they seem to be delayed and also last for weeks at a time. I've been gluten-free and soya-free with no cheating for over a year now, and going on six months dairy-free as well. I haven't pinpointed any other foods that are likely to be causing me trouble, despite going on a string of elimination-type diets when I first moved to Ireland.

all I know is for the past two weeks my reflux is back to pre-gluten free intensity, even though I'd kicked it completely to the kerb for several weeks if not a month before this. I am having a terrible headache for two weeks, and today I have muscle aches in all my major muscles. Very tired, low energy, not getting anything useful done, that kind of thing. Feel like bursting into tears at random intervals (but don't) and generally get very frustrated at everything.

I have NO IDEA if I was "glutened" or "casein'd" or what. I know when I've had soya because I become inexpliably and self-harmingly depressed over the course of several hours and then wake up fine the next morning. I've tracked this reaction down to specific foods and even soaps. However, I can NEVER figure out where the other symptoms originate from, only that they must be related to celiac because they come and go in that way.

I don't think I'm super-senstitive, but I often act like I am just in case. I was doing fine with labeled gluten-free things for the past few weeks (had genius bread every day when my reflux was gone), but I've cut those things out for the time being trying to recover. I only eat out at two or three restaurants that I trust (and were vetted by other celiacs). I have been lax about hand- and grocery-washing recently, so I'll step up the vigilance there I guess. Seems stupid to have to wash everything, even jars and packets, when you get home, but there is often flour on the conveyor belts at the grocery store.

I hate feeling this way. It makes me feel like a hypochondriac because my symptoms aren't so severe that I can legit take a break, just that I ahve to do my normal routine anyway while feeling crappy. I would actually prefer vomiting as a symptom. Easier to track when the gluten came in. But for someone prone to headaches, how do you track when the reallyreally bad headache started from the kinda bad headache? For someone with a generally low energy level, how do you see when low energy became NO energy? it's not obvious.

I only eat whole foods and packaged gluten-free foods that legally here have to be less than 20 ppm. well, that and skittles. but I'm trying to give those up too.

thanks if you've read this so far. I have a related question. I've seen people have delayed reactions of 48 hrs. Does anyone have delayed reactions of 3 or 4 days?

I think all of us can relate to you. I have been gluten free for over 7 years but I still now again find something new I react too. Carmel coloring is one big one and now diet anything. There are days i don't know if I want to cry or yell because as hard as I try, I still find new foods my body reacts to or try to venture out to eat and get sick. Ya, paid to get sick. Feel like I can't trust anyplace. I will say that I wnet to a GLUTEN FREE bakery in Reno called Haven on Earth and bought some really wonderful goodies. I guess we all will just have to keep reading and searching and be a support system to each other. Good luck, and no we all feel like that sometimes.

Jacqueline

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I wonder if you came across some old gluten when you cleaned your flat. That used to happen to me. I'd get healthy enough to have the energy to clean. Then I'd get into some old gluten in some kitchen cupboard and I'd be sick again. It was a cycle that repeated itself several times. I think that I should have hired someone else to do a good kitchen cleaning for me.

Hope you feel better soon.

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If you react to soy..you may want to check your vitamin D? I'm having a very hard time finding it without soy.

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replaced the vit D with a new one that is specifically soya-free (as well as gluten-, wheat-, milk-, etc. free)

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Oh, I draw cartoons and comics. Nothing special. I was making gift-art for people over the weekend--as in, people who can't draw were requesting that I draw their fictional characters for them, that kind of thing.

I'm an illustrator too! :-) Well.. illustrator in the making, to be more accurate. Do you have an online gallery?

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. I will say that I wnet to a GLUTEN FREE bakery in Reno called Haven on Earth and bought some really wonderful goodies.

Yes,Haven on Earth is a real haven in gluten-loaded Reno :D It is just around the corner and down the street a bit from me :)

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I'm an illustrator too! :-) Well.. illustrator in the making, to be more accurate. Do you have an online gallery?

yeah, it can be found here: http://g-e-oriens.deviantart.com/ however, that account is just where I put all my fanart, commissions, or gift art, with only a few original characters here and there. Comics I keep to myself since I may want to publish them someday.

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