Gluten Free For 3 Months And Still Spend Days In Bed From Pain And Nausea

[MissBonnie]

i was diagnosed end of february and ive been completely gluten free since then. i was in hospital with severe pain and nausea and thats how i found out i was celiac. since then ive been really up and down, but started to get alot better. the past 4 weeks ive been in so much pain. ive barely left bed. could i have cross contaminated? would it last for over 4 weeks? i have just taken dairy out of my diet too and i dont eat corn products either. the soy thing doesnt bother me because nothing ive eaten contains it anyway. i tend to just eat fresh foods. im at a loss as to why a healthy 22 year old like myself has gone through all this pain and why its taking so long to recover. my life is passing me by, ive been sick for a good 8 months now and havent worked for 6. i miss my job, my boyfriend, going out, just being able to do simple things. i cant even plan a holiday right now because i dont know when ill be better. having such a sad day about it all today

[crzy lady]

i was diagnosed end of february and ive been completely gluten free since then. i was in hospital with severe pain and nausea and thats how i found out i was celiac. since then ive been really up and down, but started to get alot better. the past 4 weeks ive been in so much pain. ive barely left bed. could i have cross contaminated? would it last for over 4 weeks? i have just taken dairy out of my diet too and i dont eat corn products either. the soy thing doesnt bother me because nothing ive eaten contains it anyway. i tend to just eat fresh foods. im at a loss as to why a healthy 22 year old like myself has gone through all this pain and why its taking so long to recover. my life is passing me by, ive been sick for a good 8 months now and havent worked for 6. i miss my job, my boyfriend, going out, just being able to do simple things. i cant even plan a holiday right now because i dont know when ill be better. having such a sad day about it all today

Were you diagnosed with a blood and tissue biopsy test? Have you had a blood test for pancreatitis?

[MissBonnie]

ive had every test you can imagine, biopsy, ultrasound, a million different blood tests. theres nothing else wrong with me im perfectly healthy on paper its so frustrating im even a perfect weight

[cyberprof]

ive had every test you can imagine, biopsy, ultrasound, a million different blood tests. theres nothing else wrong with me im perfectly healthy on paper its so frustrating im even a perfect weight

Can you post a few samples of what you eat day-to-day? Are you in a gluten-free or gluteny household?

I found that after I was diagnosed I had (1) missed some gluten via cross-contamination or medicines/vitamins (2) couldn't eat raw veggies or much fat (3) milk and milk products bothered me; (4) could only eat small meals slowly.

You could try a really simple diet: home-cooked plain white rice; chicken, turkey or beef; green beans, zuchini or squash; applesauce, sweet potatoes. (This also eliminates other main allergens - nuts, egg, milk, soy, corn, tomatoes and other nightshades like white potatoes.) No spices. Use clean/new pan or cook on aluminum foil. Cook from scratch and don't eat processed foods or food cooked by anyone else. Try this for a few days and see if it helps. If it does, then slowly add in new foods.

Hope you feel better soon.

[MissBonnie]

i cook all my own meals, but yes i live in a house of gluten eaters which is hard. i might try to cut out all processed food and just eat veggies etc for a week

[cyberprof]

i cook all my own meals, but yes i live in a house of gluten eaters which is hard. i might try to cut out all processed food and just eat veggies etc for a week

Ok, then. Try to cook your food covered either by a lid or foil in the oven or if you use a shared microwave, put a lid or plastic over the food. Don't use a shared toaster. Cook only in metal pots (not shared teflon/non-stick). Don't use a shared cutting board: Cut on a clean plate or on parchment paper.

Does anyone in your house bake with wheat flour? If so, it can stay in the air for 24-36 hours and land on food. If this is the case, avoid the kitchen or wear a germ-mask like doctors wear.

In a shared house, keep your food separate in a dedicated cabinet and refrigerator shelf if possible. Don't use shared mustard, mayonnaise, butter, jam etc. Don't put food on the counter unless you clean first. Don't use plastic utensils or colanders. Plain metal pots should be ok. China dishes and ceramic cooking dishes should be ok unless they have cracks or crevices.

And drop milk/cheese/butter, egg, soy, corn, nuts etc. to be sure. Olive oil or cooking oil should be ok.

All this sounds paranoid but may be what's making you sick.

Do you take any medicines, vitamins, supplements? If so, call the manufacturer and make sure that they're safe.

Check your lipstick/lipgloss and don't kiss your boyfriend unless he brushes his teeth first. Sorry.

Hope this helps! Let us know.

[Coolclimates]

I'm so very sorry to hear this. As a fellow Celiac sufferer who hasn't gotten well in over 1 year since I was diagnosed, I can understand your pain and frustration. Fortunately, I don't have the GI issues that you do. But I have been so tired and having lots of other symptoms. I've tried everything to cut gluten out of my diet, yet my antibodies are as high as when I was diagnosed. I've not been eating out at all and travel, among other things has become difficult. I'm 33 and feel I'm too young to have all these problems...although I'm sure I had Celiac at age 21 (probably much younger, I have a feeling I wasn't diagnosed for at least 15 years or so). Anyway, I really hope that you will feel better soon.

like cyberprof said, I have been trying some of the things listed above since I found out that I am still very sick. Best of luck to you.

[MissBonnie]

it doesnt sound paranoid, ive literally done all of this. im at wits end

[Kim69]

Hi missbonnie - sorry to say this but it may just take time. I am 1 yr gluten-free and still feel tired, Nauseas, have abdom pain, have afternoon naps, am in bed for 11 plus hours overnight etc

[domesticactivist]

Is there any way you can get some time in a house with no gluten? Would the people you live with be willing to just eat their gluten somewhere else? My son got continually cross-contaminated even though we were really careful until we deep cleaned everything, replaced mixers (and the like), replaced pots, reseasoned pans and stopped eating anything processed and stopped eating all grains and most forms of sugar...

I hope you feel better soon!

[mushroom]

I cannot imagine living in a house that had gluten in it I was so paranoid last week when we hosted someone who was rebuilding our soapstone fireplace and I bought him some good "European style" bread because he has iived in Germany most of his life and I wanted to keep him happy. I actually toasted one slice of it in my toaster and agonized over it He didn't really notice gluten free apart from the bread because I found a German butcher and bought him plenty of wurst and sauerkraut and made him red cabbage . Blut if I had to live with the knowledge of gluten in my house every day I think I would go nutz Just saying.

[GlutenFreeManna]

It may just take time. My fatigue was not significantly improved for 6 months. My neurological symptoms got gradually better. However if you are having stomach aches I think it's time to examine what your are eating. Are you eating a lot of raw veggies? or a lot of night shades? Or a lot of high fructous fruits? Have you tried new foods that may be giving your trouble? I got very, very bad stomach pain and other GI symptoms from quinoa. I had trouble digesting beans and nuts for the first six months. Actually, I still cannot do black beans. I was able to add other types of beans after one year gluten-free/DF/SF. If you can give us a general idea of what a typical day's worth of food is for you we may be able to suggest some problem foods. You can also try keeping a food and symptoms journal and see if you notice a pattern in when you get sick.

[dilettantesteph]

Is there baking done at your house? You may react to airborne flour. I do. You may need to move, get your family to change their habits, or keep far from the kitchen. You could create your own kitchen in your room with a dorm fridge and microwave.

[MissBonnie]

i have all my own utensils, pots, pans, everything. there isnt any baking done apart from gluten free. i have my own cereal that is gluten free, i eats eggs, fruit, chicken, tuna, rice cakes, rice, veggies. not alot of sugar or other bad foods. i dont drink coffee either. i just cant see where im going wrong. maybe im just taking a long time to heal? im working with a dietitian at the moment too

[MissBonnie]

Hi missbonnie - sorry to say this but it may just take time. I am 1 yr gluten-free and still feel tired, Nauseas, have abdom pain, have afternoon naps, am in bed for 11 plus hours overnight etc

are you able to work like this? i am unable to work for the past 6 months

[GlutenFreeManna]

i have all my own utensils, pots, pans, everything. there isnt any baking done apart from gluten free. i have my own cereal that is gluten free, i eats eggs, fruit, chicken, tuna, rice cakes, rice, veggies. not alot of sugar or other bad foods. i dont drink coffee either. i just cant see where im going wrong. maybe im just taking a long time to heal? im working with a dietitian at the moment too

What brands of cereal and what brands of rice cakes? You might consider dropping them for a week or two and see if that helps. Are you seasoning the chicken or the rice with the same seasonings and spices that have been on the shelf since before going gluten-free? Those spices can be cc'd from previous flour baking or from dipping a spoon in flour and then dipping it into the spice jar. Same goes for bags or canisters of sugar. You proably alreadyknow all this but thought I would mention it. Make sure that you also are not sharing other condiments that people dip a knife or spoon in like pb, butter, jelly, mayo, etc.

[Coolclimates]

well it sounds like people with severe cases of celiac disease (like you, Kim69 and me) can take a long time before we start feeling better. I don't have as severe symptoms as either of you (and fortunately no nausea or gi issues) but my antibodies are still VERY high and I've not been feeling well. I work, but only a part time job. I think I wouldn't be able to handle a full time job...I would just be so tired. I already feel exhausted most days at work, anyway.

I sure hope you get some relief soon.

[GlutenFreeManna]

well it sounds like people with severe cases of celiac disease (like you, Kim69 and me) can take a long time before we start feeling better. I don't have as severe symptoms as either of you (and fortunately no nausea or gi issues) but my antibodies are still VERY high and I've not been feeling well. I work, but only a part time job. I think I wouldn't be able to handle a full time job...I would just be so tired. I already feel exhausted most days at work, anyway.

I sure hope you get some relief soon.

Does your job involve working with anything with gluten that could be causing your high antibodies? It's not just a danger in restauarants and bakeries, but also for construction materials (drywall and wall paper paste) and even playdough in the classroom at daycares...etc.

[Coolclimates]

GlutenFreeManna;

Yes. My boss leaves out bread and other glutenous foods all over the place. There are crumbs everywhere. Until recently, I used her dishes for my meals that I ate there. But now I only eat with my own utensils and dishes. And I do NOT use the scrub sponge that is in the sink...it's filthy. I think I will even bring my own dishsoap because the stuff she has may not be safe. Plus the microwave is a mess. My boss is perfectly aware of my health problems, but I can't just ask her to clean up the whole shop and to completely change her habits. So I just work around it as best as I can.

[GlutenFreeManna]

GlutenFreeManna;

Yes. My boss leaves out bread and other glutenous foods all over the place. There are crumbs everywhere. Until recently, I used her dishes for my meals that I ate there. But now I only eat with my own utensils and dishes. And I do NOT use the scrub sponge that is in the sink...it's filthy. I think I will even bring my own dishsoap because the stuff she has may not be safe. Plus the microwave is a mess. My boss is perfectly aware of my health problems, but I can't just ask her to clean up the whole shop and to completely change her habits. So I just work around it as best as I can.

Your job could very well be keeping your antibodies high. I know it may be hard to do financially but perhaps you could take a month off from work and get your antibodies retested at the end of the month to see if there is a difference? By law your boss would have to let you have sick time and still return to your job (under FMLA). No part time job is worth being sick over.

[cyberprof]

Your job could very well be keeping your antibodies high. I know it may be hard to do financially but perhaps you could take a month off from work and get your antibodies retested at the end of the month to see if there is a difference? By law your boss would have to let you have sick time and still return to your job (under FMLA). No part time job is worth being sick over.

FMLA has some very stringent caveats, one being that it doesn't generally apply to companies with less than 50 employees, so Cool could very well be out of luck, as this sounds like a small company. It also doesn't apply to part-time workers who worked less than 1250 hours in the proceeding year. Some states have stronger provisions so it wouldn't hurt to check. Or maybe her boss will be understanding.

Here are the FMLA criteria:

To be eligible for FMLA leave, an individual must meet the following criteria:

Be employed by a covered employer and work at a worksite within 75 miles of which that employer employs at least 50 people;

Have worked at least 12 months (which do not have to be consecutive) for the employer; and

Have worked at least 1,250 hours during the 12 months immediately before the date FMLA leave begins.

[GlutenFreeManna]

FMLA has some very stringent caveats, one being that it doesn't generally apply to companies with less than 50 employees, so Cool could very well be out of luck, as this sounds like a small company. It also doesn't apply to part-time workers who worked less than 1250 hours in the proceeding year. Some states have stronger provisions so it wouldn't hurt to check. Or maybe her boss will be understanding.

Here are the FMLA criteria:

To be eligible for FMLA leave, an individual must meet the following criteria:

Be employed by a covered employer and work at a worksite within 75 miles of which that employer employs at least 50 people;

Have worked at least 12 months (which do not have to be consecutive) for the employer; and

Have worked at least 1,250 hours during the 12 months immediately before the date FMLA leave begins.

I did not know that, thanks for clarifying. I just knew my job had to allow me time off when I first started to get sick and had allow me to return without penalty. I did work for a large company, but I was part time. I still say Coolclimates should consider taking time off since she has said it is a gluten landmine there and her antibodies are still high. If she contineus to work there, however I think they should make some kind of accomodations for her celiac. I'm not sure what would be considered "reasonable accomodations, but the ADA does say employers have to provide reasonable accomodations. Perhaps she could get her own portion of countertop space that is designated gluten-free and her own small microwave there too. Otherwise, I think she needs to consider whether there is a way to avoid the break room/kitchenette area completely and never eat while at work. It sounds like she has started to avoid things that could be dangerous already but more can always be done.

[Coolclimates]

Yes, indeed, the company I work for is very small...I'm the only employee! So it's just my boss and I. She's perfectly aware of my problems but I feel like I'm not in the position to order her around. I have pretty much decided to avoid the microwave because it's full of spills from other foods and is not clean. Except if the food is enclosed (such as a microwave meal or such) I don't think I'll use it. Also, the refrigerator is full of gluten but I make sure that my foods do not touch any of the surfaces of the refrigerator directly.

[Takala]

Ick. I'd put on some disposable gloves, and get a roll of paper towels and some cider vinegar water and baking soda, and go after that microwave.

I lay a fresh 1/2 paper towel on the inside turntable of our microwave oven before using it anyway, because it's glass and I hate the chink- chink sound of glass hitting ceramic, and I don't trust some of this pyrex dish stuff. Plus, it's handy to sop up any spill immediately and then replace with a fresh one. ( I am not Mizz Fussy Housekeeper but I am determined to keep some surfaces de - glutenned !) I should buy stock in those pick-a-size towels.

[Coolclimates]

Is it possible for my food to absorb "gluten fumes" from the microwave? I'm just wondering if this might be an issue...