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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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    • knitty kitty
      I followed the Autoimmune Protocol Diet to get my symptoms calmed down and my nutrients up.   I know what a struggle it is.  You're why I'm here. Smoothing out some rough parts of your journey makes my journey worthwhile. Here's the tests you can get for Celiac antibodies...  
    • knitty kitty
      @Ginger38, I'm with you!   I could not take Metformin.  I got so sick, constant diarrhea, abdominal cramps, extreme highs and lows, no energy, weight loss, muscle wasting.  Just horrible.   Metformin is known to block thiamine absorption.  Talk to your doctor about thiamine deficiency.  It's called Gastrointestinal Beriberi.  My doctor didn't recognize thiamine deficiency outside of alcoholism.  So I took over the counter Thiamine in the form Tetrahydrofurfuryl Disulfide and felt health improvement within an hour.  Magical!   I followed the Autoimmune Protocol diet to get my stomach calmed down and control my blood glucose levels without medication. Being diabetic, we lose more thiamine through our kidneys, and the Metformin on top of it and malabsorption from Celiac.  Talk to your doctor soon!
    • Jmartes71
      Thankyou I will be seeing my new primary this coming Monday and will ask.I did ask about some other blood test to look for that I saw on this website.I pushed the second ANA panel two months ago thinking it would show but found out it doesn't.I don't have lupus which seems what the ANA panel seems to only look for.I have come to the conclusion that doctors are like hair people meaning all hair places know how to cut hair and style but not all know how to grow hair.I was given tramadel for nearly 20 years to push through. I literally can't no more and stopped taking tramadel since I was swelling slowly in the belly.I will diffently show new primary this website and hopefully he will help.Its so hard because im falling apart with my eye, skin and read every label and stay away from what Im not supposed to.I had SIBO test done and it died on me and didn't complete all 8 breathes just the 5.I spoke to np and was finally validated by word of mouth.Cone to find out I have to repeat again.I went to a reputable hospital to be let down.I have to redo breath test but want to do at hospital instead of at home so no issues.Its not pleasant drinking that glucose stuff and not getting a direct answer. I live in Northern Cali.What recommended gi would know about celiac  disease, really know because I thought I found one but didn't. I don't want to digest any wheat, dairy, peanuts, rye, barely, eggs,garlic, walnuts because I get sick.When i showed the reputable hospital my past food allergies i was told that test is old.My thoughts were i was made in 1971 and its still avtive with diagestive issues. 
    • Scott Adams
      It’s completely understandable to feel blindsided by a celiac disease diagnosis, especially when you’ve never experienced any noticeable symptoms. Many people assume that celiac disease always comes with obvious digestive distress, but in reality, some people—like you—are asymptomatic, or what’s sometimes called “silent celiac.” Even without symptoms, the disease can still cause internal damage to your small intestine and increase your risk for serious complications like osteoporosis, infertility, certain cancers, and neurological issues, including ataxia. That’s why treatment—a strict lifelong gluten-free diet—is recommended for all individuals diagnosed with celiac disease, not just those who feel sick. It’s surprising that your PCP advised you to continue eating gluten, as this contradicts current clinical guidelines. You may want to seek a second opinion from a gastroenterologist or a dietitian who specializes in celiac disease. Even without symptoms, going gluten-free is the best way to protect your long-term health and prevent complications. Your first degree relatives should also be screened for celiac disease. You’re definitely not alone—many in the celiac community have been in your shoes and can offer support as you begin this unexpected journey.  
    • knitty kitty
      Welcome to the forum, @Jmartes71, Wow!  31 years!  That's great! You can get a DNA test to show genes specifically for Celiac.  Your genes don't change whether you eat gluten or not.   Have you been checked for nutritional deficiencies?  The gluten free diet can be low in essential nutrients.  You may have become a bit deficient after such a long time.  Deficiencies in certain vitamins and minerals can lead to many health problems. Start keeping a food journal.  Other food sensitivities could have developed.  Journaling can help connect symptoms with specific foods.  Vitamin D can help calm the immune system so you don't react to everything. When I was deficient, I had peripheral neuropathy, headaches, migraines, joint aches.  I was seriously deficient in many other vitamins and minerals.  Our bodies need the eight essential B vitamins to function properly.  Thiamine deficiency can appear first because thiamine can become depleted within eighteen days. Infections can deplete thiamine stores. Covid Longhaulers are frequently thiamine deficient.  Ask for an Erythrocyte Transketolace Activity test if available.  Blood tests aren't really accurate measures of Thiamine, but if low, you've probably been deficient for a good while. Thiamine and Vitamin D may help with menopause.  I also take Oil of Evening Primrose which helps immensely.   I was deficient in Cobalamine B12, thiamine and the other B vitamins.  B Complex vitamins are important for nerve health.  I had pain up my legs from neuropathy.   A combination of Thiamine, Pyridoxine B 6, and Cobalamine B12 acts as an  analgesic.   Thiamine deficiency can take the form of Gastrointestinal Beriberi, causing almost constant diarrhea.  I bought a chamber pot and kept it handy.  I couldn't make it to the bathroom. Thiamine deficiency can affect appetite.  One can lose their appetite or become ravenous or swing between the two extremes.  Thiamine deficiency can also cause weight loss and muscle wasting.  I lost weight then muscle within days.   Yes, I understand.  I lived through it despite my doctors not recognizing thiamine deficiency outside of alcoholism because it presents differently.  I was so desperate,  I took over the counter Thiamine in the form Thiamine Tetrahydrofurfuryl Disulfide (TTFD) and felt improvement within an hour!  It was like magic!  I also took the other essential vitamins and minerals.  Talk to a dietician. Talk to your doctor about testing for thiamine deficiency.  Definitely.   Keep us posted on your progress!  Best wishes!
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