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Gluten Challenge


SLB5757

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SLB5757 Enthusiast

I have been gluten free since 5/18 or so - and in the beginning it seemed as though everything was great and my symptoms were slowly going away. Recently however - I notice that I am having the same/similar issues as I was before going gluten free. I don't feel it can really be CC because I am not eating horribly bad things (well they aren't exactly whole foods but I don't they have CC risk either). i also had negative Celiac bloodwork and was only going gluten free to see if it would help with positive allergy tests to wheat, rye, barley. My rye and Barley results were 4+ and the wheat was only a 2 but the allergist reccomended elimination all foods that werent a "0". That really leaves me with a limited list considering all that registered a 3, 4+ or even 4++.

Yesterday I went to breakfast at Cracker Barrell and the manager came out and guaranteed me all of my food would be cooked separately and in clean pans with clean utensils (his wife and mother in law have Celiac!). I ordered things he said were safe which were grits, hashbrowns - not the casserole, and an egg scrambled. My breakfast seemed gluten free. For lunch I only had some tinkyada pasta with butter and salt. I didn't really even eat dinner - and just had a few lays potato chips. When I woke up this AM I had a coffee with cream at the coffee shop and then went to class. My stomach was grumbling and I got the same sharp pains as I had pre-gluten free. This happens quite often.

It's very hard for me to justify a gluten free diet (based on multiple allergies), when I still get pains. I am thinking in my head "If I am going to get pains regardless - I am going to eat what I enjoy and not be so restrictive.

To test this theory I just ate a Chicken Sandwich from Subway. I got plain white 6 inch bread witha roasted chicken breast -and ate it plain.

I am trying to discern if I truley have problems with gluten or if maybe it's just severe lactose intolerance causing the gas build-up and sharp left sided pains. That's my biggest complaint. Not diarreah - but sharp left sided pains and gas/bloating. I do tend to get this after having half and half or ice-cream so maybe it's possible that it's a lactose thing over gluten. I really hope I don't get very ill from the sandwhich. But if I do - then I think I can determine it is definitely gluten.

:( :(

Im just afraid I will never know why I am in pain so much and I will have to learn to live with it. Ughhh.


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cyberprof Enthusiast
I have been gluten free since 5/18 or so - and in the beginning it seemed as though everything was great and my symptoms were slowly going away. Recently however - I notice that I am having the same/similar issues as I was before going gluten free. I don't feel it can really be CC because I am not eating horribly bad things (well they aren't exactly whole foods but I don't they have CC risk either). i also had negative Celiac bloodwork and was only going gluten free to see if it would help with positive allergy tests to wheat, rye, barley. My rye and Barley results were 4+ and the wheat was only a 2 but the allergist reccomended elimination all foods that werent a "0". That really leaves me with a limited list considering all that registered a 3, 4+ or even 4++.

Yesterday I went to breakfast at Cracker Barrell and the manager came out and guaranteed me all of my food would be cooked separately and in clean pans with clean utensils (his wife and mother in law have Celiac!). I ordered things he said were safe which were grits, hashbrowns - not the casserole, and an egg scrambled. My breakfast seemed gluten free. For lunch I only had some tinkyada pasta with butter and salt. I didn't really even eat dinner - and just had a few lays potato chips. When I woke up this AM I had a coffee with cream at the coffee shop and then went to class. My stomach was grumbling and I got the same sharp pains as I had pre-gluten free. This happens quite often.

It's very hard for me to justify a gluten free diet (based on multiple allergies), when I still get pains. I am thinking in my head "If I am going to get pains regardless - I am going to eat what I enjoy and not be so restrictive.

To test this theory I just ate a Chicken Sandwich from Subway. I got plain white 6 inch bread witha roasted chicken breast -and ate it plain.

I am trying to discern if I truley have problems with gluten or if maybe it's just severe lactose intolerance causing the gas build-up and sharp left sided pains. That's my biggest complaint. Not diarreah - but sharp left sided pains and gas/bloating. I do tend to get this after having half and half or ice-cream so maybe it's possible that it's a lactose thing over gluten. I really hope I don't get very ill from the sandwhich. But if I do - then I think I can determine it is definitely gluten.

:( :(

Im just afraid I will never know why I am in pain so much and I will have to learn to live with it. Ughhh.

A lot of us get better right away and then a few weeks later start to feel bad again. I did. I had to eat really carefully for a few months - not too much food, not too fatty, not raw veggies.

But your meals that you listed had two of what you say you're allergic to (or intolderant of) ... corn (grits) and milk (cream & butter).

Plus most corn grits are contaminated. The box may say "corn" but the grits are contaminated in processing, storing or transporting. It's possible that the coffee is contaminated too...not sure as I don't drink coffee.

Many of us too had to give up all dairy for a while.

IMHO it hasn't been long enough for you yet. Give it a few more weeks, and give up milk.

Best of luck and hope you feel better soon.

sylviaann Apprentice
I have been gluten free since 5/18 or so - and in the beginning it seemed as though everything was great and my symptoms were slowly going away. Recently however - I notice that I am having the same/similar issues as I was before going gluten free. I don't feel it can really be CC because I am not eating horribly bad things (well they aren't exactly whole foods but I don't they have CC risk either). i also had negative Celiac bloodwork and was only going gluten free to see if it would help with positive allergy tests to wheat, rye, barley. My rye and Barley results were 4+ and the wheat was only a 2 but the allergist reccomended elimination all foods that werent a "0". That really leaves me with a limited list considering all that registered a 3, 4+ or even 4++.

Yesterday I went to breakfast at Cracker Barrell and the manager came out and guaranteed me all of my food would be cooked separately and in clean pans with clean utensils (his wife and mother in law have Celiac!). I ordered things he said were safe which were grits, hashbrowns - not the casserole, and an egg scrambled. My breakfast seemed gluten free. For lunch I only had some tinkyada pasta with butter and salt. I didn't really even eat dinner - and just had a few lays potato chips. When I woke up this AM I had a coffee with cream at the coffee shop and then went to class. My stomach was grumbling and I got the same sharp pains as I had pre-gluten free. This happens quite often.

It's very hard for me to justify a gluten free diet (based on multiple allergies), when I still get pains. I am thinking in my head "If I am going to get pains regardless - I am going to eat what I enjoy and not be so restrictive.

To test this theory I just ate a Chicken Sandwich from Subway. I got plain white 6 inch bread witha roasted chicken breast -and ate it plain.

I am trying to discern if I truley have problems with gluten or if maybe it's just severe lactose intolerance causing the gas build-up and sharp left sided pains. That's my biggest complaint. Not diarreah - but sharp left sided pains and gas/bloating. I do tend to get this after having half and half or ice-cream so maybe it's possible that it's a lactose thing over gluten. I really hope I don't get very ill from the sandwhich. But if I do - then I think I can determine it is definitely gluten.

:( :(

Im just afraid I will never know why I am in pain so much and I will have to learn to live with it. Ughhh.

I have Ulcerative colitis (12 years) and I tested negative on two occasions for Celiac Disease. My current physician is a Celiac Specialist. She knows that there is a "Spectrum" of Gluten problems ranging from mild sensitivity to full blown Celiac Disease. Many patients fall into the category of "NO Man's Land", meaning they test negative and thye go back to eating gluten. This can ultimately lead to full blown Celiac Disease with serious implications. I am living proof of this problem and now my doctor believes I could have Celaic Disease.

I developed neurological problems 2.5 years ago, because I chose to eat gluten 10 years ago after testing negative (blood labs & biopsy). My doctor even suggested 10 years ago that some people are "gluten sensitive" and I might fall into this category; therefore I might benefit from a gluten-free diet.

If I were you, I would stick with the gluten-free diet but know there is a tremendous learning curve with it. I developed severe lactose intolerance and still do not drink or eat regular milk products. I have been on the diet since October 2008 and am still discovering foods that are not safe (which I previously had thought were safe). There is lactose free cheese (Cabot) so that is one option for you.

I would suggest that you steer clear of coffee/caffeine, chocolate, sugar as these are irritants to your digestive tract. I would not drink milk or cream as you may very well be lactose intolerant. There are OTC lactose enzymes available if you decide to try. They did not work for me initially because my stomach villi were too damaged. I also react to many Lay's potato chips as they are produced in a "shared" CC facility. I think Lays Stax product is the only frito lay chip that is safe right now.

It can take up to year for your stomach to heal so you have to give it time and be patient. The end results will be worth it!

Good Luck,

Sylviaann :)

Crayons574 Contributor

Have you tried Digestive Enzymes and Probiotics? If I go a day without these two things, my stomach will hurt. Digestive Enzymes can be taken before or after a meal 3 times a day. Enzymes help break down your food (which in turn, prevents you from getting indigestion and upset stomach). Probiotics are good bacteria for your stomach. I highly, highly recommend giving both a try. I really think they will help you. You can get them at any local health store or Whole Foods. If neither of these work, I would go to a doctor to make sure it is nothing else. Good luck and take care :)

ang1e0251 Contributor

The two things that jumped out for me from your posting were dairy and Lays. I have had reactions to Lays and have been LI for many years. If you are having trouble I would leave the dairy out for awhile and maybe revisit it later to see if you can tolerate it.

Lay's are off my safe list. I wouldn't eat them in the beginning of a gluten-free diet for sure. Another thing that maybe later you could try again. I won't eat them again after a bad reaction I had.

Sometimes it can happen that you start the diet being very careful and not eating a very large or varied diet and you feel good. Then you get complacent and don't check your labels quite as carefully because you've been eating them and they are safe, right? You also probably start trying new foods as you get better at the diet. At this point it is easy to run into sneaky gluten. Maybe a spice or product you've been using has been reformulated and no longer is safe but you didn't know that. Maybe you never checked a product like cut frozen chicken parts, it's meat, but many of those are coated with broth. I read a post today where he said he was still sick and he was using a cereal that contained malt. He didn't know this was gluten, he just thought the diet wasn't working. When he stopped using this product, he felt well again.

My point is, just because some of your symptoms have returned, don't assume the diet isn't working. Because you initially felt relief, I would say you are on the right track. Go back through your diet and cupboard and check again what you're eating. You may find some sneaky gluten like the Lay's potato chips that are giving you the blues.

SLB5757 Enthusiast
The two things that jumped out for me from your posting were dairy and Lays. I have had reactions to Lays and have been LI for many years. If you are having trouble I would leave the dairy out for awhile and maybe revisit it later to see if you can tolerate it.

Lay's are off my safe list. I wouldn't eat them in the beginning of a gluten-free diet for sure. Another thing that maybe later you could try again. I won't eat them again after a bad reaction I had.

Sometimes it can happen that you start the diet being very careful and not eating a very large or varied diet and you feel good. Then you get complacent and don't check your labels quite as carefully because you've been eating them and they are safe, right? You also probably start trying new foods as you get better at the diet. At this point it is easy to run into sneaky gluten. Maybe a spice or product you've been using has been reformulated and no longer is safe but you didn't know that. Maybe you never checked a product like cut frozen chicken parts, it's meat, but many of those are coated with broth. I read a post today where he said he was still sick and he was using a cereal that contained malt. He didn't know this was gluten, he just thought the diet wasn't working. When he stopped using this product, he felt well again.

My point is, just because some of your symptoms have returned, don't assume the diet isn't working. Because you initially felt relief, I would say you are on the right track. Go back through your diet and cupboard and check again what you're eating. You may find some sneaky gluten like the Lay's potato chips that are giving you the blues.

Thank you for your responses. Maybe I am not being as compliant as I should be with the diet and CC issues. I haven't replaced pots and pans and toasters - so maybe that's a concern. Also the chips, and the coffee. I don't want to give up caffeine - but maybe I will have too (sadly). Food was my one last little treat for myself in a stressful world so it's hard to give food and drink up. It's what unites my extended family and I do find it difficult to feed my little ones everything they enjoy while I am eating the same foods day in and day out. I do however hate feeling bad worse than the cravings I get - so I will learn to deal with the "wishing I could eat" things. There is a possibility that what I had at Cracker Barrel really wasn't safe either. They did bring my grits out with a biscuit on the plate even after the manager came to our table and explained his relative had Celiac and he knew all about procedures in the kitchen. They probably took it back and just scooted the biscuit off the plate and returned the grits to me. Corn could be an issue since it was a 4++ allergy as well as Soy. I was just hoping to eliminate the gluten and maybe the others would naturally become OK to eat. Like if my immune system wasn't in hyperdrive maybe it could handle some veggies and fruits that it said I was allergic too.

It's all trial and error at this point. I think I made a bad mistake trying subway at lunch. My stomach has swollen to twice it's size and is extremely unconfortable now. Luckily no "d" or "c" as of yet though. I will get back on my "gluten-free" wagon and hope that with time and more months under my belt things will heal. I may be expecting too much in too little time.

tarnalberry Community Regular

If you're still using your old toaster, you are getting contaminated.

If you're still using old cast iron, you are getting contaminated.

If you are eating out, REGARDLESS of the assurances they give you, if the whole restaurant isn't gluten free, you run the risk of getting contaminated. (I'm not saying don't eat out, I'm saying 'know your risks'.)

Also... what you describe is eating nothing but carbs - and starches at that. I'd feel awful on that. (That's me - some people would feel fine, but I would feel like crap.) Are you allergic to chicken, beef, pork, turkey, fish, shellfish, nuts, beans, lentils, green leafy vegetables, cruciferous vegetables, tree fruits, melons, etc? Having more variety, and smaller quantities of any one thing, may help. (For instance, you describe a lot of potatoes - perhaps less of that? And even if a list seems simple, the food may still bother you. I can eat small amounts of corn in things like corn tortillas, but corn chips do much less well in my stomach, and that even varies from brand to brand, depending on how they cook them.)


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sylviaann Apprentice
Thank you for your responses. Maybe I am not being as compliant as I should be with the diet and CC issues. I haven't replaced pots and pans and toasters - so maybe that's a concern. Also the chips, and the coffee. I don't want to give up caffeine - but maybe I will have too (sadly). Food was my one last little treat for myself in a stressful world so it's hard to give food and drink up. It's what unites my extended family and I do find it difficult to feed my little ones everything they enjoy while I am eating the same foods day in and day out. I do however hate feeling bad worse than the cravings I get - so I will learn to deal with the "wishing I could eat" things. There is a possibility that what I had at Cracker Barrel really wasn't safe either. They did bring my grits out with a biscuit on the plate even after the manager came to our table and explained his relative had Celiac and he knew all about procedures in the kitchen. They probably took it back and just scooted the biscuit off the plate and returned the grits to me. Corn could be an issue since it was a 4++ allergy as well as Soy. I was just hoping to eliminate the gluten and maybe the others would naturally become OK to eat. Like if my immune system wasn't in hyperdrive maybe it could handle some veggies and fruits that it said I was allergic too.

It's all trial and error at this point. I think I made a bad mistake trying subway at lunch. My stomach has swollen to twice it's size and is extremely unconfortable now. Luckily no "d" or "c" as of yet though. I will get back on my "gluten-free" wagon and hope that with time and more months under my belt things will heal. I may be expecting too much in too little time.

You are not alone :) I have been going through this since last October and I take one day at a time. I really miss eating out but after reacting from repeated cc (i.e. croutons picked off my salad by the wait staff), I cannot bring myself to inflict unnecessary harm/risk on myself. I drank decaf (confirmed gluten-free) with honey for several months, but only after making sure I ate something (i.e. scrambled eggs made with Pacific brand Rice milk. I started drinking coffee again after seven months and it was very gradual. I reintroduced plain gluten-free coffee very slowly, after being coffee free for six months. One cup per week (I use folgers with gluten-free vanilla rice milk and organic cane sugar) and will not go back to using cream again.

I am very suspicious of a sensitivity to corn and soy as well so I steer clear of these. When you purchase fruit, stay away from fruits that have a waxy coating..like oranges, apples, limes, bell pepers, chile peppers and lemons. The coating may contain gluten. You can either call the produce manufacturer to confirm or purchase organic fruits and vegetables.

Have you switched to gluten-free cosmetics/shamppos/lotions yet??

Sylviaann :)

sylviaann Apprentice
Thank you for your responses. Maybe I am not being as compliant as I should be with the diet and CC issues. I haven't replaced pots and pans and toasters - so maybe that's a concern. Also the chips, and the coffee. I don't want to give up caffeine - but maybe I will have too (sadly). Food was my one last little treat for myself in a stressful world so it's hard to give food and drink up. It's what unites my extended family and I do find it difficult to feed my little ones everything they enjoy while I am eating the same foods day in and day out. I do however hate feeling bad worse than the cravings I get - so I will learn to deal with the "wishing I could eat" things. There is a possibility that what I had at Cracker Barrel really wasn't safe either. They did bring my grits out with a biscuit on the plate even after the manager came to our table and explained his relative had Celiac and he knew all about procedures in the kitchen. They probably took it back and just scooted the biscuit off the plate and returned the grits to me. Corn could be an issue since it was a 4++ allergy as well as Soy. I was just hoping to eliminate the gluten and maybe the others would naturally become OK to eat. Like if my immune system wasn't in hyperdrive maybe it could handle some veggies and fruits that it said I was allergic too.

It's all trial and error at this point. I think I made a bad mistake trying subway at lunch. My stomach has swollen to twice it's size and is extremely unconfortable now. Luckily no "d" or "c" as of yet though. I will get back on my "gluten-free" wagon and hope that with time and more months under my belt things will heal. I may be expecting too much in too little time.

Correction to my last post.....When I eliminated coffee for several months, I started drinking decaf TEA (confirm that it is gluten-free) with gluten-free honey. I started adpting to this nicely as a substitute.. You could even add gluten-free ginger (giner is great for digestive issues).

Sylviaann

SLB5757 Enthusiast

Tarnalberry -

I think in a way I was "testing" whether I truly did have a gluten issue or just plain allergies to numerous foods. I needed to be certain that it was gluten before I actually went to the extent of changing toasters and everything else in my world. being a single mom with a 10 and 4 year old - I am responsible for making them gluten containing things alot - and trying to keep my food separate. Along with buying new kitchen items strictly for me - and labeling my food (so hopefully teh 10 year old won't accidentally contaminate), should I also be wearing gloves when I make them their grilled cheeses and toast with cinnamon sugar? I thought the actual touching of foods containing gluten was more an issue for celiacs with DH.

Also - yes my diet was and is primarily carbs and does make me feel pretty awful. I have a problem digesting raw fruits and veggies, and have numerous allergies to them. Now if I eat them cooked I seem to be much better. I can handle broccoli cooked and green beans and peas - even though my allergy test showed these were 4+'s. As far as fruits go I always seem to react to those with itching - and have cut those out for probably at least three years. I bought organic apples and oranges and had my first orange in 5 years the other day (allergy test didnt show allergy to oranges or apples). My mouthy was itchy for about 45 minutes but it did go away. I ate organic apples (2) yesterday with the peels cut off and did well with those also so I am excited and slowly starting to add things in one at a time. All of the meats are safe to me (no allergy), but red meat always bothers me. Im assuming it's the acid reflux I take Nexium for that this affects. I do eat alot of Turkey sausage, turkey burgers, and grilled chicken. I think if I stay basic for a while (Turkey, chicken, rice, broccolli and gr. beans, the apples and oranges) then I should see some improvement.

The subway I tried to eat after almost a month gluten-free was a TERRIBLE idea :( I didn't sleep last night as my stomach swelled twice it's size. So uncomfortable :( I will never challenge it again. I will give myself more than just a month to heal - I know it certainly took longer than a month to get to the state it is in now - so it's up to me to help the healing along.

Thanks for your support!

Sylviaann -

I am an avid coffee drinker )just one cup in the AM though. My only fear with Teas is that I would be allergic to those as well. I may be over-thinking this - but it seems to me that they are or would be so closely related to weeds and grasses and I am highly allergic to those. I guess I will never know until I try. There are many additional health benefits to Tea so it wouldn't hurt to try. Honestly I have epi-pens so I shouldnt live my life in fear of another allergic reaction I guess.

As far as the cosmetics/shampoos go - I have not looked into switching. Again I assumed it was more for people who had contact issues or Dermatitis Herpeteformis who had to watch out for beauty products. I know for certain that my shampoo (Biolage by Matrix) and Biolage conditioning balm have wheat in them - just didn't think it would affect me internally. I figured since I didn't break out from them I was OK. I use Dove sensitive skin bar soap, some bath and body body washes, and Sensodyne ProNamel for toothpaste (I know this is gluten-free...only the PRONAMEL is). For Cosmetics I use Estee Lauder double Wear foundation and usually Cherry Chapstick which I am pretty sure is gluten-free. Again - I just thought the beauty products were more for DH than anything else. I am probably mistaken there also :(

I ate a Twizzlers the other day thinking nothing of it and the second ingredient was Wheat flour. Who would have thought - even in a candy like that they add wheat. I have a long way to go before I master this diet. I am going to be faithful and diligent and read my boards and check my labels. Hopefully one day I can offer everyone else support and informed guidance to help with their journey.

Thanks to all who have taken the time to respond. You make my day a little brighter and more manageable through this tough time :)

sylviaann Apprentice
Tarnalberry -

I think in a way I was "testing" whether I truly did have a gluten issue or just plain allergies to numerous foods. I needed to be certain that it was gluten before I actually went to the extent of changing toasters and everything else in my world. being a single mom with a 10 and 4 year old - I am responsible for making them gluten containing things alot - and trying to keep my food separate. Along with buying new kitchen items strictly for me - and labeling my food (so hopefully teh 10 year old won't accidentally contaminate), should I also be wearing gloves when I make them their grilled cheeses and toast with cinnamon sugar? I thought the actual touching of foods containing gluten was more an issue for celiacs with DH.

Also - yes my diet was and is primarily carbs and does make me feel pretty awful. I have a problem digesting raw fruits and veggies, and have numerous allergies to them. Now if I eat them cooked I seem to be much better. I can handle broccoli cooked and green beans and peas - even though my allergy test showed these were 4+'s. As far as fruits go I always seem to react to those with itching - and have cut those out for probably at least three years. I bought organic apples and oranges and had my first orange in 5 years the other day (allergy test didnt show allergy to oranges or apples). My mouthy was itchy for about 45 minutes but it did go away. I ate organic apples (2) yesterday with the peels cut off and did well with those also so I am excited and slowly starting to add things in one at a time. All of the meats are safe to me (no allergy), but red meat always bothers me. Im assuming it's the acid reflux I take Nexium for that this affects. I do eat alot of Turkey sausage, turkey burgers, and grilled chicken. I think if I stay basic for a while (Turkey, chicken, rice, broccolli and gr. beans, the apples and oranges) then I should see some improvement.

The subway I tried to eat after almost a month gluten-free was a TERRIBLE idea :( I didn't sleep last night as my stomach swelled twice it's size. So uncomfortable :( I will never challenge it again. I will give myself more than just a month to heal - I know it certainly took longer than a month to get to the state it is in now - so it's up to me to help the healing along.

Thanks for your support!

Sylviaann -

I am an avid coffee drinker )just one cup in the AM though. My only fear with Teas is that I would be allergic to those as well. I may be over-thinking this - but it seems to me that they are or would be so closely related to weeds and grasses and I am highly allergic to those. I guess I will never know until I try. There are many additional health benefits to Tea so it wouldn't hurt to try. Honestly I have epi-pens so I shouldnt live my life in fear of another allergic reaction I guess.

As far as the cosmetics/shampoos go - I have not looked into switching. Again I assumed it was more for people who had contact issues or Dermatitis Herpeteformis who had to watch out for beauty products. I know for certain that my shampoo (Biolage by Matrix) and Biolage conditioning balm have wheat in them - just didn't think it would affect me internally. I figured since I didn't break out from them I was OK. I use Dove sensitive skin bar soap, some bath and body body washes, and Sensodyne ProNamel for toothpaste (I know this is gluten-free...only the PRONAMEL is). For Cosmetics I use Estee Lauder double Wear foundation and usually Cherry Chapstick which I am pretty sure is gluten-free. Again - I just thought the beauty products were more for DH than anything else. I am probably mistaken there also :(

I ate a Twizzlers the other day thinking nothing of it and the second ingredient was Wheat flour. Who would have thought - even in a candy like that they add wheat. I have a long way to go before I master this diet. I am going to be faithful and diligent and read my boards and check my labels. Hopefully one day I can offer everyone else support and informed guidance to help with their journey.

Thanks to all who have taken the time to respond. You make my day a little brighter and more manageable through this tough time :)

You are very welcome! :)

I was always a one cup coffee drinker too! Like you, I just enjoyed that one cup and it was hard to think about giving it up. My lower GI problems had become so severe (I lost ten lbs. in a year) that I told myself..it has to go if I want to heal.

I felt the same as you about cosmetics. I never knew or imagined that I could react to them as my original gluten-free Diet education occurred 10 years ago by my Celiac Specialist (it was not a known problem then). She now knows that it is a real problem for some Celiacs and Gluten sensitive patients.

My "Revelation" occurred last year, when I started to closly monitor everything (food, medications,shampoos, lipsticks, etc.), I discovered that I was triggering my myoclonus by using products containing gluten. Every Celiac or gluten sensitive person is different but if you really want to see if you can improve (sooner the better :), I would encourage to remove all cosmetics-, including lotions from your diet. If you need suggestions for replacement products, please let me know. There are many people who have posted gluten-free cosmetic products on this board.

If you have a known allergy to tea, then I cannot blame you for not drinking it. You have to do what works for you (medically speaking). You can always consult with your allergist and call the tea manufacturer to confirm if a product is safe for you .

Take care,

sylviaann :)

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    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
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