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rana

Need Dectective Help

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Hello! I need some help/insight into my current situation: I am getting glutened first thing in the morning and I cannot for the life of me figure it out. I have learned I'm pretty sensitive (I eat nothing processed, at the moment in attempts to figure this out I am not even using spices, just meat and veggies and rice and i wash all those things as best i can, gluten-free kitchen and all that). The attack starts before I even get in the shower, this means NOTHING has even come near my mouth at this point. I have checked all my toiletries and even replaced them all with those that actually say gluten free on them. I suspected the chapstick I was using at night before I fell asleep (figure it doesn't really enter my stomach until I wake up and swallow, lick my lips, etc), I got rid of it, no help. Then I really thought I had it with my toothpaste (its aquafresh, i called about my previous aquafresh but realized i got a slightly different kind this time), same theory as the chapstick and would explain why i have a secondary gluten reaction come about 11am every day (morning glutening from brushing at night, afternoon from the morning brushing). I was so excited to wake up today convinced i had figured it out and would have the first real gluten free day in recent memory (if ever), but no luck. I really can't think of anything else, and it almost doesn't even seem food related at this point, I feel fine by the time I get home after work every day regardless of dietary changes (this is a minor cc reaction, but still annoying) does anyone have any ideas? My lotion is gluten free, I use Tide degerent and I believe Ajax dish soap (I have to double check though). I realize you really need to figure these things out for yourself, but like I said, I'm out of ideas and I just started a new job (after not working for a year to recover, I was so sick) so I really can't afford to be sick everyday like this. Any thoughts are very much appreciated!

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Hi Rana, I have just one question before trying to answer your question. Does the attack go away as soon as you have a bowel movement? What are the symptoms?

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Also, when you say before you get in the shower and nothing has touched your mouth -- does that include no coffee either? I'm just asking because it might be one of those things we don't even consider as a possibility.

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Hi Rana, I have just one question before trying to answer your question. Does the attack go away as soon as you have a bowel movement? What are the symptoms?

This is an excellent idea. I noticed I now get nauseous if I don't have a regular bm (or need to go and can't at the moment).

Also, what about seasonal allergies? Mine make me ill - I even get a fever from them.

Are your ears ok? That can throw you off completely.

What do you DO at 11 every day? Are you hungry? Do you go to a specific spot? Perform a particular task?

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And you've been gluten free for a while now I'm guessing...

Are you waiting too long between meals/snacks? The timing sounds like when your stomach is most likely to be empty ie first thing in morning and long after breakfast/before lunch

Feel free to post a list of any of the bathroom/cleaning/laundry products (+ ingredients where you can, not just the brand but alsoo the type eg XYZ soap with dfsdfjsd for sensitive xyz) that you use and that touchs your skin. I'm gradually getting to be pretty familiar with the ingredients that cause me trouble but appear to be unrelated to gluten. I might be able to help.

I avoid anything with Xanthan gum (in most toothpaste, and many gluten-free foods). Doesn't matter what product (food / cleaning/bathroom or anywhere) it was in but I seemed to take 10 steps backwards.

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THANK YOU everyone for taking the time to reply, really really appreciate it!

To answer your questions I don't feel better after a BM, but I have been a bit more clogged up than usual and I did actually wonder if that was playing a role (if nothing more than gluten is staying in my system longer, not sure if that makes sense though). I have been wondering if its blood sugar issues and not glutening. I get blood sugar issues if i get glutened. these mysterious morning episodes have made my stomach protude like crazy as if a gluten attack (that symptom doesn't make sense to me blood sugar wise that's why I was thinking it was gluten), I've also had bouts of brian fog and irratibilty with it, which for me is a tell tale gluten sign, but again, that could be blood sugar i suppose... my biggest symptom throughout the day is armpit sweating (so attractive!) and feeling hot in the cheeks, i get these when i get glutened as well. its just that same feeling, like you know its gluten, you just know, but maybe i am wrong. i hope i'm wrong!

I don't do anything in particular at 11am, i've even kept track of snacks, gum, chapstick, lotion, coffee (i buy whole beans, wash them, then grind them, i'm that paranoid)and no matter what i switch out or refrain from i seem to have the same result. Maybe I've cut down my food too much out of paranoia and my body is going haywire from it. i would hate that i'm bothering you guys if its just blood sugar, and admittedly i experience hunger pains throughout the day (something i cherish and didn't experience for years), when usually if i'm glutened i don't feel hungry for hours after if not days. these are minor attacks, but enough to distract me from learning a new job.

Diandliam, thank you for your offer of help finding safe cleaning products, i will take you up on that! (i'm at work now though, shhhh) What toothpaste do you use? I did switch to Desert Organics I think? and used it last night. was too scared to use it again today, and admittedly i did do better today overall, but i'm realizing its probably not toothpaste related. What liquid hand soap is safe? that's one i've been worried about, i use the off brand Equate maybe i shouldn't.

Is it possible to have 'phantom' symptoms? Like maybe I've been getting glutened more than usual lately and it takes a while for symptoms to completely disappear? this is so confusing to me because i didn't use to have this problem, i would wake up feeling great and only have blood sugar issues if i got glutened. maybe its new job stress coupled with everything. i have insurance again so i'll hit up the doc for other intolerances and blood sugar issues.

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I'd try the blood sugar thing first, seems the most obvious.

Try adding fiber in every meal, it stretches the protein.

Eat every 2 hours before you're hungry.

I'm sure you know all of this, but just thought I'd toss it in.

I went through a phase with blood sugar. It was awful.

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I'd try the blood sugar thing first, seems the most obvious.

Try adding fiber in every meal, it stretches the protein.

Eat every 2 hours before you're hungry.

I'm sure you know all of this, but just thought I'd toss it in.

I went through a phase with blood sugar. It was awful.

thank you! i will do that... i did know this but i haven't been doing it lately. i think i finally, finally, cut all the cc gluten sources out of my diet in the last few weeks so i'm sure that changes a person's body chemistry and could trigger bloog sugar issues. hashing this out on this forum has made me realize its got to be blood sugar. thank you again.

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Is it possible that it's something from the night before? Vitamins or other meds that you take every night? Often I can tell as soon as I wake up, but there are times when I think I feel OK when I first get up, and then WHAM it kicks in after a few minutes. More often for me, though, that's a corn reaction. Is it possible that you're reacting to something else?

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Is it possible that it's something from the night before? Vitamins or other meds that you take every night? Often I can tell as soon as I wake up, but there are times when I think I feel OK when I first get up, and then WHAM it kicks in after a few minutes. More often for me, though, that's a corn reaction. Is it possible that you're reacting to something else?

well you're the first person i've heard from that also has morning episodes. this only started for me in the last few weeks and i can't for the life of me think of what changed. In the past these blood sugar issues have always been linked to gluten, so i hope i'm not still getting cc'ed somewhere because i sure don't know where at this point! i don't even take any vitamins right now or meds while i'm trying to figure out all gluten sources (i drink green smoothies for natural vitamins for now). i'm beginning to realize i need to check for other intolerances! i love corn. i hope its not that...

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It might be worth taking out the corn / rice (ie go grain free) for a week or so and then introduce one at a time. There seems to be a few members of this forum who have had to cut out all grains so worth considering. Make sure you stock up on a variety of yummy potatos for variety and to help fill the belly.

I'm in Australia so products probably differ but mostly imported so hopeful. Check your online healthfood/gluten free stores.

I have just (about a week) changed from a xanthan gum containing toothpaste to this one:

Ransom AloeDent Sensitive. aloedent.co.uk My teeth have never felt so clean and along with diet change are looking so much better in colour too. Not 100% convinced about other chemical ingredients (gluten free) so still doing my homework.

I've had no reaction to the change so hope I'm on to a winner.

I did some googling and presume your toothpaste is Desert Essence ? The ingredients look good. I'd avoid it only for the seasalt (my DH reacts to iodine) but otherwise probably better than the brand I'm using.

Bananas are my staple. I would be up and down like a yo-yo without them!

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well you're the first person i've heard from that also has morning episodes. this only started for me in the last few weeks and i can't for the life of me think of what changed. In the past these blood sugar issues have always been linked to gluten, so i hope i'm not still getting cc'ed somewhere because i sure don't know where at this point! i don't even take any vitamins right now or meds while i'm trying to figure out all gluten sources (i drink green smoothies for natural vitamins for now). i'm beginning to realize i need to check for other intolerances! i love corn. i hope its not that...

I would say you are on the right track here. Tracking meals or snacks from the night before may show something.

When I initially went soy free, I was just avoiding the things that would give me an (near) immediate reaction (soy sauce, protein, etc.). I felt much better, but I was having delayed (minor) reactions on the way to work in the AM. Since eliminating all other sources of soy (and correcting a couple of other intolerances), the morning issues went away.

Best of luck.

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stress is a digestive deal-breaker for me. i keep a little xanax around for unavoidable bad news and i take it in tiny tiny doses - like i break the tablet into sixths - it seems to help my guts not turn to jello. a new job would certainly stress me out.

soy (for me) will mimic gluten without the lasting effects so i eat as little soy as possible. or if i do eat some, i expect the results :P dairy just makes me tired after i eat it but no huge gut issues.

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thank you everyone! Its obvious i need to check for other intolerances. I don't eat any soy at the moment (no processed foods so its not sneaking in) but I do eat a little corn and one serving of brown rice a day. The corn is eaten at night though so that's something to consider! I used to cut out all grains (did the Specific Carbohydrate Diet for a while, it really helped, but now I follow it loosely which sort of defeats the purpose of it).

notme! - good name - i just put that together last night myself, i know i was majorely stressed at the prospect of getting this job, then way more stressed when i actually got it, its intimdating to join the world again after gluten takes you out of it, and i'm thinking the stress maybe triggered my blood sugar issues again, regardless of gluten. And i do still think that maybe that aquafresh toothpaste was subtely nailing me, it just makes so much sense the more i look back at other mystery glutenings (i would attribute it to a meal, then try that same food later and no reaction, etc, it all times out to when i would brush my teeth!). but who really knows.

anyway, thanks again for everyone's input! I'm seeing some improvement over the past few days, hopefully i can keep that momemtum up!

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I have been finding that if I get overtired or stressed at work or even when out trying to get errands done, it will bring on a milder form of gluten reactions, I have found that if I can relax and calm myself or just take a break and rest, that the symptoms will go away - I am pretty new to this so am not ruling out that it could be lingering effects from being cc'd (like you I am still in the process of changing out my toothpastes and lotions etc - there is just so much to work out). But my feeling is that for myself, some of these reactions are stress related and my hope is that as I get further along in my recovery that things will level out. Hope things work out for you.

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well you're the first person i've heard from that also has morning episodes.

That's when I get my worst GI symptoms too. Sometimes very early in the morning. For me it can be anything I had the day before. I would eliminate almost everything to figure it out. For a few days you can go without toothpaste, soap, laundry detergent etc. If that doesn't help, then you know it's your food. Start using that stuff again and start eliminating food things etc. Elimination diets are the only way I have managed to do it. It is hard to count on other people's reactions unless you are very familiar with their reactions and know that theirs are like yours. We are all individual in our levels of sensitivity and just because someone else reacts to something or doesn't gives us no assurance as to what we will react to. This is stated in the recent FDA report analyzing research of gluten exposure. http://www.fda.gov/downloads/Food/ScienceResearch/ResearchAreas/RiskAssessmentSafetyAssessment/UCM264152.pdf

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Thank you both for your input... I do believe stress is playing a role, but I also believe gluten must still be getting in somewhere. I have been doing the swapping in and out of things (i went two days without using traditional toothpaste don't tell!) and no definitive results. My lasest guess is the On The Border corn chips I've been eating, I usually eat them at night, it was my last hope of being able to eat easy, ready made, food and i was desperate to hold onto them. So no more chips for a while, maybe forever if that's proving to be it.

Steph, I see you on a lot of posts and have come to trust your opinion as you seem like one of the few people on here who really is pretty sensitive. Thank you for being a helpful presence on this site. Is there any kind of peanut butter you can use? I would love to have peanut butter back but am too scared to try any. Also, is there a source you know of for safe nuts? I have tried nu tson line but became suspiscious of their almond flour and stopped (i'm not sure if its the flour or not, further testing needed, but don't want to test until i am truly gluten free for several weeks, which i'm close to being able to do but not there yet). Thanks again!

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Steph, I see you on a lot of posts and have come to trust your opinion as you seem like one of the few people on here who really is pretty sensitive. Thank you for being a helpful presence on this site.

Thank you. (I think LOL)

Also, is there a source you know of for safe nuts?

I'm sorry, but no. I'm trialing almonds from Anderson Almonds currently, but don't have a definitive answer yet. They are shelled and I really hope they work. I do know someone else who is very sensitive who recommended them, which I why I am trying them.

In general nuts work better when you shell them yourself. That worked for me for some time until I started noticing reactions to lower levels. It's time consuming though.

I have noticed that nutsonline carry gluten containing products in addition to their nuts. anuts was a gluten free facility last I checked and they are the ones from which I used to get my nuts in shell.

I WAS ASKED MY OPINION AS A SUPER SENSITIVE

FOR THOSE WHO ARE NOT SUPER SENSITIVE, NUTS ARE NATURALLY GLUTEN FREE

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Hi Rana, I just had a look at your symptoms list again and can say I've recently been having terrible sweating periods in the mornings (feeling much hotter than it actually was) and also pooling in the stomach (with bloating). It doesn't say on your profile if you are a lady or gentleman. For my part I know that I was experiencing quite an imbalance of hormones and there was a lot of pooling of food/blood in my lower belly during these episodes. With the herbs I'm taking that is getting quite a lot better. How is your digestion overall? Do you void your bowels every day? Is there any sign of constipation/dehydration?

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Hi Caroline, thanks for taking the time to try and help me! I am a lady (or at least a female hehe), so I suppose hormones could be playing a role. I am not sure if I've ever experienced "pooling" specifically, but I defintely, absolutely, experience the good ol' stomach bloat. My stomach is pretty much permanently bloated all the time right now with all this stuff going on and gets worse when I get glutened. If only I could wear sweat pants to work on those days ;). My digestion seems great otherwise, I can tolerate dairy like a champ (i took a long break from it while healing but am back because i couldn't help myself), and I can tolerate fruits / veggies I couldn't tolerate when first going gluten free. I do seem to void my bowels most days which I attribute to my green smoothie intake, otherwise I think I would have to deal with constipation pretty regularly (did you like my wording there? is that a pun!?). I try to drink plenty of water being in Colorado so I'm usually pretty good about that, but by no means perfect.

What herbs are you taking and which brands? and speaking of, Steph can I pick your brain one more time and ask if there are any brands of supplements you have found to be safe? I hate to not be taking any but I'm just too terrified right now and have gotten horribly ill off several brands that say "gluten free" right on the label. I really seem to be highly sensitive right now. Does that ever wear off for some people?

I still seem to be having some hot episodes here and there (i'm only 29 so no menopause yet!) but they have come down drastically with the absence of those corn chips. Sigh... I miss them. Now I'm wondering if its CC or a corn intolerance and hoping nothing else pops up to bother me, I am so ready to feel "normal". Or at least my version of it.

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Steph can I pick your brain one more time and ask if there are any brands of supplements you have found to be safe?

I made a health breakthrough when I dropped all vitamins and supplements. Counter intuitive, isn't it?

I MENTION THIS REACTION AS A SUPER SENSITIVE CELIAC. SORRY TO BE IN THE REGULAR SECTION, BUT I WAS SPECIFICALLY ASKED A QUESTION. PLEASE DISREGARD IF YOU AREN'T A SUPER SENSITIVE CELIAC.

I try hard to eat a balanced diet and get everything I need through food.

I did add back an iodine supplement, Thyadine,and Life Extension Vitamin D3, 2,000 IU, in the winter. I diluted it since I didn't want to take that much. I only need a drop a day of each. That cuts down the effect of possible cc.

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I made a health breakthrough when I dropped all vitamins and supplements. Counter intuitive, isn't it?

I MENTION THIS REACTION AS A SUPER SENSITIVE CELIAC. SORRY TO BE IN THE REGULAR SECTION, BUT I WAS SPECIFICALLY ASKED A QUESTION. PLEASE DISREGARD IF YOU AREN'T A SUPER SENSITIVE CELIAC.

I try hard to eat a balanced diet and get everything I need through food.

I did add back an iodine supplement, Thyadine,and Life Extension Vitamin D3, 2,000 IU, in the winter. I diluted it since I didn't want to take that much. I only need a drop a day of each. That cuts down the effect of possible cc.

It is so interesting that you should say this. Though I'm on a herbal prescription i completely dropped my usual vits/minerals and the wierd thing is that I really don't feel that i need them at all now. I don't get the muscle aches, itching, D and other things that used to bother me so I suppose am very lucky! Like you the vits seemed to be making things worse not better!

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Hi Caroline, thanks for taking the time to try and help me! I am a lady (or at least a female hehe), so I suppose hormones could be playing a role. I am not sure if I've ever experienced "pooling" specifically, but I defintely, absolutely, experience the good ol' stomach bloat. My stomach is pretty much permanently bloated all the time right now with all this stuff going on and gets worse when I get glutened. If only I could wear sweat pants to work on those days ;). My digestion seems great otherwise, I can tolerate dairy like a champ (i took a long break from it while healing but am back because i couldn't help myself), and I can tolerate fruits / veggies I couldn't tolerate when first going gluten free. I do seem to void my bowels most days which I attribute to my green smoothie intake, otherwise I think I would have to deal with constipation pretty regularly (did you like my wording there? is that a pun!?). I try to drink plenty of water being in Colorado so I'm usually pretty good about that, but by no means perfect.

What herbs are you taking and which brands? and speaking of, Steph can I pick your brain one more time and ask if there are any brands of supplements you have found to be safe? I hate to not be taking any but I'm just too terrified right now and have gotten horribly ill off several brands that say "gluten free" right on the label. I really seem to be highly sensitive right now. Does that ever wear off for some people?

I still seem to be having some hot episodes here and there (i'm only 29 so no menopause yet!) but they have come down drastically with the absence of those corn chips. Sigh... I miss them. Now I'm wondering if its CC or a corn intolerance and hoping nothing else pops up to bother me, I am so ready to feel "normal". Or at least my version of it.

Hey Rana

It's great that we can all compare notes on our symptoms and hopefully find solutions. I'm on a proper herbal prescription made for me, so not necessarily the right herbs for you. Amongst them are: Schizandra Chinesis, Rosemary, Dong Quai, Borage, Burdock, Siberian Ginseng, Oregon Grape Root. To tell you the truth I feel better than I have done in ages digestion wise but some of the symptoms i've been having since i was a teen have cropped up (unrelated to gluten)... left arm pain, left lung congestion (sounds like angina but it isn't) - might be from all the cheese I've decided I'm going to eat :-). I'm hoping that they will start to go eventually too. Overall the effects have been amazing... more energy, clearer head, sleeping like a log (and i mean like a peice of wood, out for the count!!!), regular voiding of bowels (I did love your pun btw!). I had heat issues since my twenties and am only 40 now but found after children it was much worse... boy you are making me feel OLD!

The other great thing is that I'm hardly reacting to things anymore. I thought i was reacting to the food I ate... but no, it was basically that when I ate my liver was filled with congested blood (TCM term i.e. full of backed up hormones, compounds it was trying to excrete, cholesterol etc) and when i ate my liver just got overwhelmed and started dumping bilirubin in to my blood stream (hence the itching). This is what i had when I was pregnant (cholestasis). With the bitters in this mix my bile flow is much better. Cholesterol and hormones levels in my system are normalising. If you have a registered herbalist near you try going to see them but as Yolo on here says be very careful that they are using NON GRAIN alcohol - it would need to be something like beet (sugar beet here in the UK)... large companies like Vogel use this method.

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i completely dropped my usual vits/minerals and the wierd thing is that I really don't feel that i need them at all now. I don't get the muscle aches, itching, D and other things that used to bother me so I suppose am very lucky! Like you the vits seemed to be making things worse not better!

There's been some press lately about how vitamins aren't regulated very well. That might have something to do with it.

About an earlier remark you made: I definitely notice a hormonal effect on my gluten reactions. They have always seemed worse when I am having my period. I noticed this even before I had heard of gluten.

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There's been some press lately about how vitamins aren't regulated very well. That might have something to do with it.

About an earlier remark you made: I definitely notice a hormonal effect on my gluten reactions. They have always seemed worse when I am having my period. I noticed this even before I had heard of gluten.

Yes, re the hormones. I have always suspected something wierd. I'm at the end of the month now and whilst it is definitely better, some things are still there faintly in the background. However, I used to be awful in the run up to my period. I knew things were really bad when it seemed like i had pmt for about 85% of the month!

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    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au