Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten Challenge


SLB5757

Recommended Posts

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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 :)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.