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Frustrated

frustratedinks

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frustratedinks Newbie
frustratedinks
Posted

I was diagnosed with Celiac about 4 months ago. After the first week of going gluten free, I was feeling so much better. My stomach wasn't hurting and I wasn't having near the problems I was having before. I still had some issues like very mild heartburn or indigestion, but nothing major. As the weeks went on I figured I would start feeling even better, but I started to feel bad again. I never got as bad as I was before I went gluten free, but still felt bad. I chalked it up to just healing and it takes time. It started getting worse as the weeks went by. Well, over Christmas, I realized that I had been eating gluten every week at church during communion. I didn't even think about it before. I'm glad I figured it out. About two days later, I was served gluten at a restaurant that had a gluten-free menu. Now, it's been about 1.5 weeks and I'm feeling like crap all over again. I have heartburn, indigestion, my stomach hurts - all of that stuff. When will I feel better again and is there an amount of time that I should start being worried that something else is wrong? I just need some support because I have no idea what to expect. I keep being told to wait it out, but this process has been going on almost 8 months. (at least the worst part has lasted that long) I'm so frustrated and just want to feel better. Does anyone have any words of encouragement for me or advice or even information of what you have found out? I need some positiveness to get me through this. :-)

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eeyore Collaborator
eeyore
Posted

If you're absolutely sure that there has been no cross contamination in what you've been eating for 2 weeks to a month, I'd say it's time to start testing whether or not other foods are giving you problems. The most widespread intolerances/allergens -such as dairy, soy, and eggs -should be the ones you check first. Another problem could be rice. About 40% of celiacs are rice intolerant. Another measure you can take is to clean out the kitchen and get rid of every possible hiding place for gluten, because gluten can remain in many pots and baking pans. Even inhaling gluten can cause problems for some celiacs.

I hope this helps!

Darn210 Enthusiast
Darn210
Posted

About 40% of celiacs are rice intolerant.

I don't usually do this . . . but I'm going to have to ask for some sort of documentation on that one. I have never seen a number associated with rice intolerance and I would certainly say it is a much much smaller number than 40% although I wouldn't care to hazard a guess as to what it was. With a little brief googling, I could find no number.

Are you by any chance eating oats? Oats can be a problem for some celiacs and celiacs that can eat oats need to make sure that they are certified as gluten free oats. Quaker does not certify any of their oat products as gluten free . . . as far as that goes, they don't certify their rice products (as in rice cakes) either.

frustratedinks Newbie
frustratedinks
Posted
  • Author

I haven't eaten oats, but I eat apple-cinnamon rice cakes for breakfast ALL the time. I looked at the ingredients and it looked gluten free. I guess I'll stop eating those too. That sucks. They were an easy snack. But I'll do anything to feel better. Feeling bad is driving me crazy. Thanks for the tip!

Darn210 Enthusiast
Darn210
Posted

Lundberg rice cakes are gluten free and they have lots of flavors (I just checked and they have a cinnamon toast one). I think they run a little "thick" for my taste. We actually switched to corn thins (because they are so thin) but our rice cakes (and now corn thins) are used primarily to hold peanut butter :P

jackay Enthusiast
jackay
Posted

Lundberg rice cakes are gluten free and they have lots of flavors (I just checked and they have a cinnamon toast one). I think they run a little "thick" for my taste. We actually switched to corn thins (because they are so thin) but our rice cakes (and now corn thins) are used primarily to hold peanut butter :P

I sure hope I am not sensitive to rice because I feel it is the one food that keeps me going. I eat Lundberg's brown rice and their rice cakes daily. They have so many flavors of rice cakes. My local store didn't carry all the flavors so I asked them for specific ones and they got them. I really like the buttery carmel flavor.

I am waiting for food intolerance bloodwork to come back to see if I react to rice. I sure hope not.

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Have you been dairy and soy free also. Some people need to stay off dairy and soy (along with the gluten) for a few months for their intestines to heal. Every time you eat gluten you start the healing process over again. So this may be why you are not feeling as well as your could.

Also start checking everything (yes, again) that goes into your mouth or that you use on your body. Toothpaste, drinks (some sodas are not gluten free), lipstick, shampoo, mints, candy, soy items (so chinese food may be a no go for you), and learn about the cross contamination issues. If the plastic bowl you are eating out of has had gluten in it (even if washed) it might be making you sick. One crumb of poisoned toast in the butter makes me ill.

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mysecretcurse Contributor
mysecretcurse
Posted

Similar things happened to me... over time, I realized that gluten free was nowhere near enough for my gut. I also am sickened by corn, dairy, chickpeas (and some other beans) and soy. Most of us have to go beyond gluten free to get well. Hope that helps.

frustrated09 Newbie
frustrated09
Posted

Sounds like you might need to do an elimination diet. Mine only seem to take 1/2 a day of it to figure out the suspects. I just went off Legumes and am doing better. Spend a day eating the food you think you have no problems with and then start adding other food. last week i spent a day eating bananas, plain rice, apple, hot dog....the next day i was bouncing off the wall with energy. research and keep track of the ingredients to what you eat and when you eat it. Everyone reacts differently but after a week of getting gas and fatigued the same time everyday....it's something i ate for breakfast. Also check lotions, shampoos, deoderant, meds, anything that touches the skin is absorbed.

self diagnosed- gluten/dairy/soy/nuts/legume intollerent.

New-To-This Rookie
New-To-This
Posted

My husband & I have been gluten free since early November. Not knowing that even our toaster could be a problem was scary, as he ended up in the hospital dec 12th. Basically it was to little to late for him AND possible cross containation from items that never crossed my mind. Since than my kitchen as had a complete overhaul, all wooden and plastic items that MIGHT have come in contact with wheat are gone as well as all scratched cooking pots and pans and of course I got a new toaster. I even replaced the toothbrushes in the bathroom! Since than he has been doing really good, however yeaterday he had a minor problem, and we think it was either the bacon or the gluten free bread. Its nice to be able to say its X or Y! We haven't had either in a long time so we know it was one or the other. Hopefully you will get to a point where you can say oh, I had X for lunch, and I haven't had anything else unusal or that I haven't eaten in days or weeks so it must be X. Its a good feeling knowing what to avoid in the future. If its happening on a regular basis I would definately follow frusterad09's advice, its really important to know if other foods are casuing problems as well as gluten, or it makes it extremely difficult to stick with a diet that is suppost to make you feel better when its not working. If you have tried that already, its time to check for other medical issues you might not realize you have. I am reading a book called Celiac Disease A Hidden Epidemic by Peter Green, chapter 16 is called Why symptoms persist - I'm on the diet and not getting better It lists several reasons for symptoms to continue with of course the first being you are still gettin gluten. but then goes on to list several others in detail so you know what to look for and what you night need to do to solve this problem. Yes, I am fairly new to this, but as a housewife and runner for my husbands business I have a lot of time to read and have been doing so. I feel that the best defense is to know what you are up against. I hope you find the support and help from this site as wonderful as I have and you find releif to your issues soon!

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Do check to see if it's the xanthan that's the trouble.

https://www.celiac.com/articles/21710/1/Could-Xanthan-Gum-Sensitivity-be-Complicating-your-Celiac-Disease-Recovery/Page1.html

DownWithGluten Explorer
DownWithGluten
Posted

I haven't eaten oats, but I eat apple-cinnamon rice cakes for breakfast ALL the time. I looked at the ingredients and it looked gluten free. I guess I'll stop eating those too. That sucks. They were an easy snack. But I'll do anything to feel better. Feeling bad is driving me crazy. Thanks for the tip!

I feel your desperation, and when you said "I'll do anything to feel better..." my advice would be, maybe you need to take a step back and eliminate a lot more from your diet first. Do some hardcore research of brands/etc that are confirmed gluten free instead of trying to go from labels. I'm sure I lean toward the side of paranoia, but I've been doing this diet for 3 years and I still will not just go from a label, unless it is REALLY simple (like Cape Cod chips, just says canola oil, potatoes, salt. lol). But as far as most others...pretty much my standards is unless I know for sure that is gluten free, either from googling it, calling the company, finding a list online of gluten free items a certain brand has to offer, etc...I will not buy/eat it. So for example, the rice treats. I wouldn't touch those unless I had looked it up first and found something somewhere saying they were safe to eat, gluten free wise. because gluten can be hidden in so many things...it's not just wheat that we have to look out for (which might be easy). It's the barley, malt, rye too.

And simple things, like spices. Sometimes flour is put into things like spices, parmesean cheese used in salad dressing, just to make it more 'fluid' which of course ruins things for us.

So...again. This has just been my strategy, to heir on the side of safety and not eat something unless I've had some "proof" or confirmation of some sort that it is gluten free. There are probably many more things out there I COULD be eating, I just don't know it yet.

A lot of grocery stores might offer lists of their gluten-free products.

Other places it is hidden are in things like over the counter and prescribed medications...they can have gluten.

So to me as a gluten-intolerant person, the culinary world is an unfriendly place that I have to be on guard against at all times, lol. Each food item could be a potential enemy thus I do some sort of a pre-check before consuming, if I can help it. I've only been full-blown "glutened" two times. Once, from taking a risk on movie popcorn at an unfamiliar theater. Second, from a local restaurant that has a gluten free menu, still not sure what went wrong there :(

Just my two cents.

Oh...and about the communion. I'm Catholic, and I only drink the wine now. But, still...make sure to watch when the priest breaks the big communion into a wine chalice (usually during/around the Lamb of God song). At the church I go to, he ONLY breaks it into his chalice, which he and the Eucharistic ministers drink all up. But at some parishes, he breaks it into the big chalice and then pours that into the others that get shared with parishioners, and/or will bring that "contaminated" wine chalice down to one of the lines of parishioners. In that case, make sure you keep your eye on the 'contaminated' chalice so that you don't drink from it. Does that make any sense? It's always a like a little game, when my mom and I go to an unfamiliar parish, we both watch the priest like hawks when he breaks the host, and then watch what he does with that wine...lol. I've had to walk all the way down to a different line far from my pew just to avoid the "contaminated" chalice. It's tiresome, as is this gluten-free diet in general, but when you think of the alternative (being in pain/suffering/sick all the time), it is a necessity.

orchid1 Newbie
orchid1
Posted

I was diagnosed with Celiac about 4 months ago. After the first week of going gluten free, I was feeling so much better. My stomach wasn't hurting and I wasn't having near the problems I was having before. I still had some issues like very mild heartburn or indigestion, but nothing major. As the weeks went on I figured I would start feeling even better, but I started to feel bad again. I never got as bad as I was before I went gluten free, but still felt bad. I chalked it up to just healing and it takes time. It started getting worse as the weeks went by. Well, over Christmas, I realized that I had been eating gluten every week at church during communion. I didn't even think about it before. I'm glad I figured it out. About two days later, I was served gluten at a restaurant that had a gluten-free menu. Now, it's been about 1.5 weeks and I'm feeling like crap all over again. I have heartburn, indigestion, my stomach hurts - all of that stuff. When will I feel better again and is there an amount of time that I should start being worried that something else is wrong? I just need some support because I have no idea what to expect. I keep being told to wait it out, but this process has been going on almost 8 months. (at least the worst part has lasted that long) I'm so frustrated and just want to feel better. Does anyone have any words of encouragement for me or advice or even information of what you have found out? I need some positiveness to get me through this. :-)

this site might give you some answers Open Original Shared Link

orchid1 Newbie
orchid1
Posted

this site might give you some answers Open Original Shared Link

also try Open Original Shared Link

  • 4 months later...
Emily928 Newbie
Emily928
Posted

DownWithGluten (or others), I have been taking the same approach of just taking the wine at communion. My question is, do you just "skip" the communion wafer line? I've had some trouble doing this as some of the Eucharistic Ministers give me weird looks or even try to point me back into the communion wafer line. How do you deal with this?

I feel your desperation, and when you said "I'll do anything to feel better..." my advice would be, maybe you need to take a step back and eliminate a lot more from your diet first. Do some hardcore research of brands/etc that are confirmed gluten free instead of trying to go from labels. I'm sure I lean toward the side of paranoia, but I've been doing this diet for 3 years and I still will not just go from a label, unless it is REALLY simple (like Cape Cod chips, just says canola oil, potatoes, salt. lol). But as far as most others...pretty much my standards is unless I know for sure that is gluten free, either from googling it, calling the company, finding a list online of gluten free items a certain brand has to offer, etc...I will not buy/eat it. So for example, the rice treats. I wouldn't touch those unless I had looked it up first and found something somewhere saying they were safe to eat, gluten free wise. because gluten can be hidden in so many things...it's not just wheat that we have to look out for (which might be easy). It's the barley, malt, rye too.

And simple things, like spices. Sometimes flour is put into things like spices, parmesean cheese used in salad dressing, just to make it more 'fluid' which of course ruins things for us.

So...again. This has just been my strategy, to heir on the side of safety and not eat something unless I've had some "proof" or confirmation of some sort that it is gluten free. There are probably many more things out there I COULD be eating, I just don't know it yet.

A lot of grocery stores might offer lists of their gluten-free products.

Other places it is hidden are in things like over the counter and prescribed medications...they can have gluten.

So to me as a gluten-intolerant person, the culinary world is an unfriendly place that I have to be on guard against at all times, lol. Each food item could be a potential enemy thus I do some sort of a pre-check before consuming, if I can help it. I've only been full-blown "glutened" two times. Once, from taking a risk on movie popcorn at an unfamiliar theater. Second, from a local restaurant that has a gluten free menu, still not sure what went wrong there :(

Just my two cents.

Oh...and about the communion. I'm Catholic, and I only drink the wine now. But, still...make sure to watch when the priest breaks the big communion into a wine chalice (usually during/around the Lamb of God song). At the church I go to, he ONLY breaks it into his chalice, which he and the Eucharistic ministers drink all up. But at some parishes, he breaks it into the big chalice and then pours that into the others that get shared with parishioners, and/or will bring that "contaminated" wine chalice down to one of the lines of parishioners. In that case, make sure you keep your eye on the 'contaminated' chalice so that you don't drink from it. Does that make any sense? It's always a like a little game, when my mom and I go to an unfamiliar parish, we both watch the priest like hawks when he breaks the host, and then watch what he does with that wine...lol. I've had to walk all the way down to a different line far from my pew just to avoid the "contaminated" chalice. It's tiresome, as is this gluten-free diet in general, but when you think of the alternative (being in pain/suffering/sick all the time), it is a necessity.

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