Antibodies still super high?

[SahiraHyena]

Back in July of last year, i was diagnosed with Celiac disease. I got a recently blood test, when I was first diagnosed, my numbers were 240. They're now way over 300+. I made many phone calls and e-mails, aside from the rice and a few other things, every company gave me a clear answer. All my food is gluten free...what am i doing wrong?

My doctor said i could ruin my intestines if this keeps going....
Anyone have any advice?

[cyclinglady]

Welcome!  

First, do not panic.  You are probably doing everything correctly.  If not, we’ll find out.  

In theory, villi damage from celiac disease is supposed to heal within weeks on a gluten free diet.   Doctors and scientists believe this because our guts are constantly rebuilding and repairing.  In real life, there are many environmental factors to consider.   The learning curve for the  gluten free diet is steep. We are talking about some serious behavioral changes and learning a new way of eating.  Reading labels, making our kitchens safe, not kissing someone who just drank a beer.  The list is long (but can be mastered).  

If you ask most members of this forum,  they will tell you that it takes a year or longer to heal.  Often there is collateral damage (e.g. osteoporosis, anemia, liver damage, rashes, etc.) to deal with and then there is learning the new diet.  Mistakes will be made.  Cross contamination is a huge issue.  Do you ever eat out?   Some celiacs are super sensitive and 20 ppm might be fine on average, but not fine for a super sensitive person.  Sometimes, this can be resolved by eating a Whole Foods diet and allowing the immune system to reboot.  Often eating processed gluten free foods work for some but not all celiacs.  

Next, celiac experts are finding that the antibodies tests that were designed to help diagnose celiac disease, are not always good for following up testing.  The problem is that those tests are the only non-evasive tests in the current celiac disease toolbox — better than nothing!  I can attest to that!  My antibodies, like yours were even higher than when I was diagnosed.  Of course, usually I went in after a severe glutening.  I would get so discouraged.  What else would cause elevated antibodies?  I did not eat out for a year and even then it was a 100% gluten free restaurant.  Finally, I went  on the Fasano diet (I will attach a link, thanks to KarenG) just this last Fall.  It did not work.  I still had stomach symptoms (heartburn, etc.) My recent endoscopy though revealed a healed small intestine and gastritis that was not related to celiac disease.  Whew!  I had been doing everything right with the diet.  Maybe that reboot helped?  Who knows for sure?  But I am healed!  ?

Chances are, you need to look to your diet and see if you are getting exposure to gluten.  Do you live in a shared household?  Are your supplements or medications gluten free?  Lipstick or pet food?  You can see that there can be many factors as to why your antibodies are still elevated.  Read the link and share it with your doctor.  Consider a consultation with a dietitian who is celiac savvy or find a local celiac group.  Sometimes it helps to have someone else to help you solve a problem.  

Hang in there!  Do not beat yourself up!  You are still a Newbie!  Oh, read the “Newbie 101” thread at the top of the “Coping” section.  You might find it useful.  

Open Original Shared Link

 

[SahiraHyena]

Well, I can tell you I'm pretty terrified, and the list of things celiacs may have intolerance too is huge. A year or more? Wouldn't my antibodies have gone down a little bit though? And not skyrocketed? 

I know one thing I need to work on is cross contamination. I live with gluten eating family members and my grandmother is really not being co-operative at all about keeping the kitchen safe for me. I've been told to get my own pots, pans, plates, and other food ware, because the stuff I used was being washed in the same dish load as my grandmother's, who eats gluten a lot. I had no idea cross contamination ran that deep.

I thought I was being super careful about reading labels and buying everything that was certified, I called every company I could think of asking about gluten, and all my food seem to check out fine.

I do eat out, but very rarely, and only at gluten free restaurants, I talk to staff and tell them I have celiac and make it super clear that gluten can harm me. I've only eaten out about twice since that blood test. I really hope rice is not triggering something because I really cannot afford a whole foods diet. I've heard that some things can trigger celiac like symptoms, but not cause any intestine damage, is this true?

So high antibodies can mean something else? I get awful bloating, and it's like bile and acid just sit there. I also get really bad muscle spasms in my back, and super bad acid reflex. It used to be so bad that I'd have to force myself to throw up, because it'd be like my digestive system stopped to a halt, and the food wasn't going anywhere. I've stopped having to make my self throw up, and the last few days I've had a little bit of pain. Still super bloated though, just not painful bloating. 

I'm glad you are healed! <3

I got another blood test two days ago, and my doctor is sending me to a stomach doctor for more tests.

I don't use any makeup at all, and I have no pets. I have no supplements either. Medication I take is Depo-provera, Trimebutine Mal, and Pantoprazole SOD EC. Would my doctor know if these contain gluten or should I ask my pharmacist? 

My doctor won't seem to send me to a nutritionist no matter how much I asked. Can I find one myself?

Thank you for this post! The fact the antibodies could be something else gives me hope! 

[cyclinglady]

Ah, you do have several things that could be contributing to your elevated antibodies.  Because of your comments, I would NOT discount your antibodies tests results.  Most likely they are accurate and you are getting continued gluten exposure.  Why?  You are still symptomatic, live in a gluten house that does not have safe gluten free practices in place, your grandmother does not seems to understand the severity of your illness, and you have not verified that your medications are gluten free (ask your pharmacist and contact the pharmaceutical manufacturer).   Eating out is like playing roulette.  With antibodies that high, you can not afford the risk!   If the restaurants were 100% gluten free, you would not need to talk to the staff about protecting you.  I assume you meant that  the restaurants  offers a gluten free menus.  Not safe when you are still so sick! 

Please tell your doctor about all the possible gluten exposures.   You might need the whole family to sit down with a dietitian.  You need their support.  If you are an adult, it might be time to move out, if you can not be safe at home.    If a minor, your doctor can convey the necessity of your being gluten free.  He is obligated to see that you get appropriate treatment and care.  

I am sure there is more to your story, but if you want to get well, you need to advocate for your health and that starts with understanding celiac disease and the gluten free diet and having family cooperation and support.  

 

[SahiraHyena]

Well, I actually had no idea that celiac contamination ran that deep, the doctor told me if i changed my diet i'd be fine, he gave me no other information so I just assumed all I had to do was change my diet. I had no idea about washing dishes in the same water and same cloth that was used on gluten dishes, or counters or any of that sort. There was a ton of little things I never even thought of.

My first plan of action is to get my own pots, pans, dishware, things like that. I don't have the money to move out nor am I able to afford a whole foods diet. I have not be able to hold a steady job to save my life due to mental illness. 

I'm definitely still symptomatic, but the last couple of days have been better. I've taken to doing my own dishes, and washing my hands SUPER often. I've had a lot of bloating but pain and nausea have been very minimal. You are right though, she really doesn't understand how severe it is, and basically treats me like one massive inconvenience, it's annoying. My mother doesn't believe I'm sick either. I'm panicking about my antibodies and Nan just says "Oh a little won't hurt you."

I cannot get it through her head that yes, a little will harm me. Sitting down with a dietitian definitely sounds like a good idea. I really do advocate for my own health, but I tend to fall through the cracks, it's been a theme of my life, and I don't know why. I guess i'm just forgettable? I was on the wait list for 2 years for physio for my leg, and was never called. Different things like that keep happening.

No more eating out? Alright will do! I usually don't anyways because I barely can afford it. I only ate out twice since my December blood test.

Honestly, I hope my blood test is just gluten, or some other gut thing. I heard some celiacs can't eat grains, I can't give up rice or i won't be able to afford my own food...

[Ennis-TX]

6 hours ago, SahiraHyena said:

Well, I actually had no idea that celiac contamination ran that deep, the doctor told me if i changed my diet i'd be fine, he gave me no other information so I just assumed all I had to do was change my diet. I had no idea about washing dishes in the same water and same cloth that was used on gluten dishes, or counters or any of that sort. There was a ton of little things I never even thought of.

My first plan of action is to get my own pots, pans, dishware, things like that. I don't have the money to move out nor am I able to afford a whole foods diet. I have not be able to hold a steady job to save my life due to mental illness. 

I'm definitely still symptomatic, but the last couple of days have been better. I've taken to doing my own dishes, and washing my hands SUPER often. I've had a lot of bloating but pain and nausea have been very minimal. You are right though, she really doesn't understand how severe it is, and basically treats me like one massive inconvenience, it's annoying. My mother doesn't believe I'm sick either. I'm panicking about my antibodies and Nan just says "Oh a little won't hurt you."

I cannot get it through her head that yes, a little will harm me. Sitting down with a dietitian definitely sounds like a good idea. I really do advocate for my own health, but I tend to fall through the cracks, it's been a theme of my life, and I don't know why. I guess i'm just forgettable? I was on the wait list for 2 years for physio for my leg, and was never called. Different things like that keep happening.

No more eating out? Alright will do! I usually don't anyways because I barely can afford it. I only ate out twice since my December blood test.

Honestly, I hope my blood test is just gluten, or some other gut thing. I heard some celiacs can't eat grains, I can't give up rice or i won't be able to afford my own food...

Sorry for being late to this....I am dealing with some odd health issues myself. I can give a few tips. gluten free cookware ina gluten house...look up nordicware microwave cookware, you can get omelette makers, rice cookers, veggie steamers, grill plates (splatter cover is a must) these are cheaper then getting all new pots and pans.
Gluten proteins can be destroyed at 500F...so castiron can be cleaned in a oven self clean cycle. Scratched teflon and stainless could harbor gluten in scratches and need to not be used.
Foil line baking dishes, or with with disposable ones.
Freezer paper/butcher paper, use it like a place mat to prep your food on, and eat on. Clean up is a breeze and you have a safe prep area. Keep your foods on a different shelf...or in your room. I keep Gluten free nuts and seeds in plastic ammo cans on a shelf for my foods.
You mention rice...some are a issue, a few brands are considered safer then others like Lundberg. Always wash your rice before cooking it regardless. I myself had grains, starches, sugars, etc flare up my Ulcerative Colitis so I had to go grain free with a keto/paleo diet base...yeah that does get expensive.
Funny you should mention the backing up issue...I am getting that right now in a.....odd form...anyway if yours is caused by constipation it could be a magnesium difenciey which is common with this disease and could also cause nerve issues, muscle cramping etc. Natural Vitality Calm Magnesium start off 1/4 tsp a day (1-2g) and slowly up to by 1/4 tsp to the full dose or til you get loose stools then back it back down dosing to tolerance
Iron...must be taking with a vitamin C supplement to absorb
B-vitamins not just B-12 you need all of them as they work together, I take Liquid Health Stress & Energy and the Neurological Support 1 tbsp each 3 times a day. Same company also makes a Vitamin D3 all liquid so just mix it in a glass  of a beverage.
To bad you do not live near here lol, I always half joke about housing people with issues in a shared house so they might have a safe place...I sometimes swear we need celiac safe group homes or living communities for us to help each other and live a safer less stressful life. Many have that kind of live in issue you talking about with gluten eaters...I have my own horror stories as do many others. Look around and search the board you will find many.
https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

[squirmingitch]

6 hours ago, cyclinglady said:

Ah, you do have several things that could be contributing to your elevated antibodies.  Because of your comments, I would NOT discount your antibodies tests results.  Most likely they are accurate and you are getting continued gluten exposure.  Why?  You are still symptomatic, live in a gluten house that does not have safe gluten free practices in place, your grandmother does not seems to understand the severity of your illness, and you have not verified that your medications are gluten free (ask your pharmacist and contact the pharmaceutical manufacturer).   Eating out is like playing roulette.  With antibodies that high, you can not afford the risk!   If the restaurants were 100% gluten free, you would not need to talk to the staff about protecting you.  I assume you meant that  the restaurants  offers a gluten free menus.  Not safe when you are still so sick! 

Please tell your doctor about all the possible gluten exposures.   You might need the whole family to sit down with a dietitian.  You need their support.  If you are an adult, it might be time to move out, if you can not be safe at home.    If a minor, your doctor can convey the necessity of your being gluten free.  He is obligated to see that you get appropriate treatment and care.  

I am sure there is more to your story, but if you want to get well, you need to advocate for your health and that starts with understanding celiac disease and the gluten free diet and having family cooperation and support.  

 

This is excellent advice!!!!

Also, you said you can't afford a whole food diet. What??????? Do you understand what a whole food diet is? It does not mean to go grocery shopping at the stores called "Whole Foods". It quite simply means no processed food. It means fresh meats, fish, veggies, fruits, dairy, eggs, beans & non gluten grains such as rice & quinoa. A whole food diet is actually cheaper than a diet including processed foods.

Stainless steel pots & pans can be shared with gluten foods as long as they are scrubbed very well after cooking gluten foods. As long as dishes are rinsed before putting them in the dishwasher, there is no problem with gluten & non gluten dishes being washed together. You can not however, use the same toaster as gluten eaters.

 

If you can't get to a dietician, then look for a local celiac association that holds meetings. You could take your family  & they could explain to them just how important it is for you to be pristinely gluten free OR perhaps a member or 2 would come to your house & talk with your family to explain things to them. 

 

[SahiraHyena]

I do not have a job, so I only have 190 to spend for an entire month. I'm aware of what a whole foods diet is, but I simply cannot afford it with the budget I have. I also would like to point out that I do not eat any animal products. 

Please do not tell me to eat animals and animal products or I will leave this website. I came here for advice, not to be told that Celiac and veganism cannot be done, as I know this is a lie. 

A whole foods diet cheaper...? I'm not sure where you are from but vegetables and things are extremely expensive where I live. Not to mention I have extremely limited transportation. 

I do not have a dishwasher. I got some of my own clothes and dishware today actually. I have a safe spot for my food and my plates and things as well now. 

It's weird, I live in a place where the highest number of celiacs live in the province, but I cannot find any celiac groups...

I can't afford nuts, they're extremely expensive here. Magnesium? I never thought of that... I can't afford supplements. I wish I could move in somewhere that's gluten free that's for sure.. >< I'm in Canada. That is good to know about Gluten Protiens! Thank you for the info. <3 

[squirmingitch]

I had no idea you were vegan. No one here is going to tell you that you have to eat animals or animal products. It is going to be hard though to get all your proper nutrition without buying supplements which I understand you can't afford.

I'm sorry but I don't understand what you were eating before you were diagnosed that was so much cheaper than whole foods. 

Good for you getting cloths, dishes & a safe spot for your food now. Don't forget about things like condiments. You either need your own or make darn sure no one else is "double dipping". Brightly colored tape can designate YOUR condiments that no one else is to use.

[Ennis-TX]

1 hour ago, SahiraHyena said:

I do not have a job, so I only have 190 to spend for an entire month. I'm aware of what a whole foods diet is, but I simply cannot afford it with the budget I have. I also would like to point out that I do not eat any animal products. 

Please do not tell me to eat animals and animal products or I will leave this website. I came here for advice, not to be told that Celiac and veganism cannot be done, as I know this is a lie. 

A whole foods diet cheaper...? I'm not sure where you are from but vegetables and things are extremely expensive where I live. Not to mention I have extremely limited transportation. 

I do not have a dishwasher. I got some of my own clothes and dishware today actually. I have a safe spot for my food and my plates and things as well now. 

It's weird, I live in a place where the highest number of celiacs live in the province, but I cannot find any celiac groups...

I can't afford nuts, they're extremely expensive here. Magnesium? I never thought of that... I can't afford supplements. I wish I could move in somewhere that's gluten free that's for sure.. >< I'm in Canada. That is good to know about Gluten Protiens! Thank you for the info. <3 

Yeah I like meat flavors..but I can not digest them, red and poultry cause major issues due to pancreas issues. I  do sometimes have fish but gave up all meats other then egg whites for lent. It does get epensive living when your protein comes from nuts and seeds and vegan protein powders I body build and go through pea protein and vegan protein powders like crazy (whey allergic and lactose intolerent). Well bulk buy rice and wash it, if carbs treat you well then congee, rice gruel, cabbage soup, are great. Look up Nuts.com Mygerbs.com for nut and seeds at great prices...I have a great source for wholesale almond but you need to give up enough for 25lbs....sorry I know not much help....I have limited budget myself....get by doing a gluten free bakery, and chef jobs.......and "aquiring" foods through other methods. Rare but with rice at least you could probly go to a food bank or have your local churches help.

 

43 minutes ago, squirmingitch said:

I had no idea you were vegan. No one here is going to tell you that you have to eat animals or animal products. It is going to be hard though to get all your proper nutrition without buying supplements which I understand you can't afford.

I'm sorry but I don't understand what you were eating before you were diagnosed that was so much cheaper than whole foods. 

Good for you getting cloths, dishes & a safe spot for your food now. Don't forget about things like condiments. You either need your own or make darn sure no one else is "double dipping". Brightly colored tape can designate YOUR condiments that no one else is to use.

I used to live on $60 a month in food before diagnosis and other health issues. Breakfast was whole eggs and sometimes chorizo, in burritos, lunch and dinner was either bulk soups ( cabbage most of the time) or instant noodles with sides of rice either Mexican, Asian with veggies, or congee rice gruel. Or I just ate with the family when I had time.  .....Miss cheap huge pots of cheap soup and living a week off them......same with rice.

[apprehensiveengineer]

Where are you living in Canada? Boxed foods and meat/dairy tend to be much more expensive compared to plant-based foods, unless you're living in Newfoundland or way up north (where all food is expensive). If that is where you live, I have much sympathy for you and can't offer much as I have only lived in Ontario and BC. If not, I think you're falling into the economy of scale trap (boxed food seems cheaper because it's less upfront, but costs more per average meal if you math it out).

Rice and dried beans are the cheapest things going. Buy big bags of these. Kraft peanut butter is safe, buy a bulk tub of that. Corn tortillas are also inexpensive and can be frozen. For flour, the cheapest is Maseca brand 100% corn flour (similar price to reg flour). For vegetables, buy whatever is cheapest. Usually the cheapest will be whatever is in-season and local(ish). Canned and frozen vegetables are equally nutritious, so buy those if need be.

If you live in a city, ethnic grocers usually have the cheapest vegetables (and have bulk rice/beans/tortillas). Best of luck.

[SahiraHyena]

I only have 190 to live off of a MONTH, and no more money after that. My budget never gets bigger as i do not work. I have tried a whole foods diet before and have ran out of food half way through the month. I'd rather not give away exactly where I live, but I will say I'm in New Brunswick.

Vegetables are extremely expensive and I do not have the transportation to get them every week. I can barely afford the bus. I can't find a well priced rice that says gluten free on, I cannot find a bag of dried beans that says gluten free on it, only canned. I can't even find lentils that are safe for me to eat. Corn Tortillas... if 5 bucks for only 6 tortillas is cheap to you then... great, but it's expensive for me. I don't use flour, gluten free or otherwise. I buy frozen vegetables and barely any fresh. I only eat like one salad a month IF i'm lucky. Kraft peanut butter is not vegan.

Before I was diagnosed? A BUTT TON of gluten... Not even joking, all i really ate was gluten, everything i OWNED had gluten in it... bread and large boxes of pasta that only cost a dollar and super cheap pasta sauce. Basically a crap ton of carbs and the rare salad and a lot of frozen vegetables. Canned beans. I eat the same now except rice pasta and rice tbh. 

I'm still driving myself insane though. I'm washing my hands like every 10 minutes, every time i touch something in the kitchen and the house, i have my own cloths and things now, but i'm actually thinking of buying a hot plate and cooking in my room.  I could open a window to let steam out, I've got a microwave stand right next to the window and technically even my own sink, there's a bathroom RIGHT next to my bedroom window. I can't seem to get things through my grandmother's head. I watched her touch all the plates after handling gluten...without washing her hands...

I'm getting a rash on my hands i'm washing them so much...

[Ennis-TX]

32 minutes ago, SahiraHyena said:

I only have 190 to live off of a MONTH, and no more money after that. My budget never gets bigger as i do not work. I have tried a whole foods diet before and have ran out of food half way through the month. I'd rather not give away exactly where I live, but I will say I'm in New Brunswick.

Vegetables are extremely expensive and I do not have the transportation to get them every week. I can barely afford the bus. I can't find a well priced rice that says gluten free on, I cannot find a bag of dried beans that says gluten free on it, only canned. I can't even find lentils that are safe for me to eat. Corn Tortillas... if 5 bucks for only 6 tortillas is cheap to you then... great, but it's expensive for me. I don't use flour, gluten free or otherwise. I buy frozen vegetables and barely any fresh. I only eat like one salad a month IF i'm lucky. Kraft peanut butter is not vegan.

Before I was diagnosed? A BUTT TON of gluten... Not even joking, all i really ate was gluten, everything i OWNED had gluten in it... bread and large boxes of pasta that only cost a dollar and super cheap pasta sauce. Basically a crap ton of carbs and the rare salad and a lot of frozen vegetables. Canned beans. I eat the same now except rice pasta and rice tbh. 

I'm still driving myself insane though. I'm washing my hands like every 10 minutes, every time i touch something in the kitchen and the house, i have my own cloths and things now, but i'm actually thinking of buying a hot plate and cooking in my room.  I could open a window to let steam out, I've got a microwave stand right next to the window and technically even my own sink, there's a bathroom RIGHT next to my bedroom window. I can't seem to get things through my grandmother's head. I watched her touch all the plates after handling gluten...without washing her hands...

I'm getting a rash on my hands i'm washing them so much...

Hmm getting a bit too parnoid can drive you nuts too....try getting your own set of dishware that is a different color like red, get red everything keep it in your own area. THOSE are YOUR dedicated gluten free ware....see no worries you can wash them in a different sink if it make you feel better.
OH here is a idea. little foldable table, set up in your room, do the microwave thing with the cheap nordic ware for now, later you can invest in one of those combo rice cookers/veggie steamers/crock pots....Use crockpot liners if you want to be extra careful.

Cheap soups sound like your best bet. frozen veggies, cabbage, canned tomatoes, sauted bell pepper/onion/garlic, One of my others I used to go to was a potato and coconut milk base with sauteed onion/garlic blended then add in a few bags of chopped frozen broccoli. about $12 can make you a 6liter pot of thick soup loaded with veggies to live off of for a week add in a side of steamed rice or cook it in it. The liner lets you keep it safer, PS rice dry is generally safe, buy the cheap bulk bags, sort the rice on the freezer paper we talked about earlier, removing anything foreign, if you see wheat grains then perhaps give it to your family but I doubt you will,  then wash it well, then cook.

 

[apprehensiveengineer]

190 a month will be hard, but doable. You don't need to buy rice that says gluten-free on it - any rice is fine, just pick through it and wash it first. Same with beans and lentils. That said, Clic brand beans/lentils are Canadian Celiac Assoc certified and cheap, so I would recommend those if they have them where you live.

Canned/frozen veggies are cheap. They never go bad either! Potatoes should definitely be cheap if you live in NB (you guys are no. 1 in potatoes!). Rice noodles are also very cheap. Don't worry about those not being labelled gluten-free either.

Compliments brand (store brand at Sobey's, Safeway, Metro) has a lot of cheap products that are both gluten-free and vegan, such as vitamin pills. It might be worth it to buy a generic multivitamin (women's specific or neonatal - has more iron). Failing that, a lot of cereals and vegan beverages are fortified with minerals (Compliments also makes gluten-free cornflakes and rice crispies).

I looked up the No Frills flyer for Saint John to see what prices are like in NB. I know that this is likely not exactly where you live, but I'm sure prices are similar enough. Here are some cheap vegan/gluten-free things you can get, just from the flyer:

8kg rooster brand rice - 12.88 (this is at least a month's supply!)

2L Almond Breeze drink - 2.97 (fortified with minerals and B12, which you need)

750g store brand frozen peas - 2.00

400mL store brand canned tomatoes - 1.00

1lb strawberries - 1.97

sweet potatoes - 1.27/lb

cabbages - 0.57/lb

3lb bag of organic potatoes - 2.97 (you don't need organic, that's just what's in the flyer)

Now this is just what was in the flyer. It seems like your produce prices in NB are similar (or better) than those where I live. You should be able to get 3lb bags of carrots for ~$2, bagged spinach for $2-3 etc. The beans I buy cost ~$3 for a 750g (?) bag.

If you bought all these things, the total would definitely be less than $47/week, and some of the items would last much longer than a week. For context, I spend about $80-100/week on groceries, but I also buy meat/dairy and I also eat 3500-4000 calories/day (1.5-2x a normal person's intake) because I am an athlete.

Remember: you can do this, and you will do this!

 

 

 

[SahiraHyena]

.......you have to wash rice....? Yeah see I didn't even know that.....

I just dumped my rice in the rice cooker and away we go.

I used Kohinoor brand rice for the longest time, but I need to switch brands because they were rude to me, SUPER rude, when I called to ask if it was gluten free.

I couldn't afford $47 a week, i'd run out. I'd have enough for 3 weeks and that's it. 

If Rooster Brand rice doesn't have gluten free on it, how do I know it's even safe? I'm afraid of buying things that are not labeled gluten free. 

Gluten free cornflakes...? I've never seen those... 

I use Potatoes in my frozen soups a lot. 

Again, I don't know where you're shopping because I've NEVER seen a certified gluten free bag of dried beans and lentils, ever, I have to buy canned beans, which are not so cheap. 

Right now i'm starving and every time I go into the kitchen, I have a panic attack, my grandmother doesn't wash her hands and keeps forgetting, nothing is safe for me to touch, and I hate having to scrub everything down just because I want food... ugh...

[Jmg]

25 minutes ago, SahiraHyena said:

Again, I don't know where you're shopping because I've NEVER seen a certified gluten free bag of dried beans and lentils, ever, I have to buy canned beans, which are not so cheap. 

Right now i'm starving and every time I go into the kitchen, I have a panic attack, my grandmother doesn't wash her hands and keeps forgetting, nothing is safe for me to touch, and I hate having to scrub everything down just because I want food... ugh...

You should wash rice, but not because of fears about gluten, but because it helps to remove other toxic elements. Here's a good article explaining why and including some detailed advice on how to wash rice. It's especially relevant to you if you're eating a lot in your diet:

Open Original Shared Link

You shouldn't need to have certified gluten-free labels on beans or lentils etc. Just wash them before cooking.  

[exshuffleskater]

On 3/9/2018 at 11:32 PM, SahiraHyena said:

I don't use any makeup at all, and I have no pets. I have no supplements either. Medication I take is Depo-provera, Trimebutine Mal, and Pantoprazole SOD EC. Would my doctor know if these contain gluten or should I ask my pharmacist? 

 

Other subjects seem to be well covered, so I'll focus on this...  Trimebutine Mal is a gut motility reducer.  That's why you feel like things just stay there.  Ask if you can reduce the dose.  I also take one, called Bentyl, but it doesn't totally cause stasis, which is what it sounds like yours is doing. 

I also take Miralax every day to keep the Bentyl from making things too slow.  I need that combination because I have smooth muscle problems with peristalsis.  This is all part of the illness.  Once gluten gets into my gut, my gut seizes up and nothing moves, then it sporadically goes the other way and it's too loose.    Meanwhile, I'm mentally stunned because how can a person function like that?

So ask your doctor if Miralax is ok for you or not. 

The third one you mentioned is a PPI, which I hope you limit to taking that at night to prevent reflux while sleeping. But the rest of the time, your body might actually need the acid to digest food. 

Long story short, your meds might be too high dose for you, based on what you've said here.

Depo Provera...  are you having menstrual issues that make your gut problems worse?  Because that's also a strong med.  And when they say "can cause blood clots" they don't usually say what happens to a person.  I had life threatening embolisms in my lungs from that sort of drug.  There are low dose older meds that can regulate cycles but have much less danger of clots. 

The last thing I'd like to say is, it's not a nutritionist you need, it's called a dietician, and it's covered by insurance in many countries.  When you were diagnosed you should've been assigned to one at that time.  If not, then you can try to find one yourself.  Bring your grandmother to that meeting.

Ask grandma why she wants you to be sick, and to make you infertile.  Because that's exactly what she is doing. Pull no punches, because she isn't pulling hers.

 

[exshuffleskater]

6 hours ago, SahiraHyena said:

I used Kohinoor brand rice for the longest time, but I need to switch brands because they were rude to me, SUPER rude, when I called to ask if it was gluten free.

This is BS, (them being rude to you makes no sense).  The northern area of India has a higher rate of Celiac than the UK where you live now.  Open Original Shared Link

Nobody asked to be ill.  And only since the 1950s have we been able to find out why people get sick like this.

You do not have to give up your culture for this illness... there are 31 pages of gluten-free recipes from India right here:  Open Original Shared Link

My family also has an ethnic culture.  They were afraid I would lose my culture because I was sick.  I don't know if that's what they think in your family, but my family calmed down a lot when I learned to make gluten-free replicas of classic foods. Good luck!  

[exshuffleskater]

6 hours ago, SahiraHyena said:

Right now i'm starving and every time I go into the kitchen, I have a panic attack, my grandmother doesn't wash her hands and keeps forgetting, nothing is safe for me to touch, and I hate having to scrub everything down just because I want food... ugh...

Can you create a safe space for making some "college" foods in your own room?  Is it possible to have a kettle and a microwave in there?  If you use only paper plates you wont' have to worry about contamination.  (Note that chapati flour is wheat, you're better off with black gram flour uttapam if you know how to make that.)  A square electric frying pan can complete the set.  You can make a lot of things on that if you treat it like a griddle.

If you make traditional foods, make your own spice mix with a coffee grinder.  Don't trust the mixtures you can buy.  Get a list of their ingredients, buy them whole and grind them.  I love Indian food, and for a while I couldn't stand hot spices...  the Kashmiri peppers are not so spicy, just a little bit. They were ok for me.

Buy two small tubs to use to wash your own dishes.  If you do it every night, then there won't be too much.  Just avoid the dishwasher completely. I started doing that a few months after I started, and nothing has settled my gut more than not having the constant iffy-cleaning of the dishwasher to worry about. 

One small tub is for hot water with soap and a drop of bleach... the other is for cold rinse with a drop of bleach. But you can reduce that a lot by sticking with paper plates when possible (obviously doesn't work for soup, so some dishes are unavoidable). Lay them on a clean towel, dry them right away and get them out of the gluten kitchen fast.  Use your own sponge and none other. Keep the sponge in your room.

But it occurs to me that maybe your shampoo has hydrolyzed wheat protein in it?  Or a hair product or hairspray?  Because the purpose of that is to have it stick to keratin, and that includes your hands.  So let's say it's in the shampoo... it's a repair shampoo... so the wheat protein (gluten) sticks to you hair to repair it, but it also sticks to the keratin in your skin, and it might last all day. Small pieces may break off if you eat something with your hands. 

Ditto henna...  the full ingredients of henna is rarely revealed.  I love henna, but I have had to stay away from it since I've been sick.  I just can't chance it.  In a couple of years I'll try to find a safe henna again.  For now, stay away, if you use it. 

Not trying to scare you, it's just that there is so much to think about when you try to avoid gluten. 

[SahiraHyena]

I do not live in India and I am not ethnic, and I don't live in the UK, I'm Canadian and live in Canada.

I was only given that stomach pill AFTER I explained to the doctor that nothing was moving. Nothing was digesting so he gave it to me to help me digest food, that's not why stuff is going to a halt... It was coming to a halt BEFORE i took those pills. 

It's not too high a dose at all, my digestive system wasn't moving so my doctor gave that to me to get it moving. 

I take my PPI in the morning when I wake up, as instructed to, It's only 40gs.

I refuse to give up depo until my doctor lets me take out my uterus. I cannot handle periods what so ever and I take Depo to make them gone out of my life so I can function properly.  

Infertile doesn't matter to me, I don't want my own children and I don't care if I become infertile, in fact, I really hope that happens. 

My grandmother simply doesn't get that a little bit of gluten can harm me. Just now she brought in toast and the smell made my chest hurt, and she just yelled at me for being ridiculous rather then accepting what I have to say. I've always lived in a non supportive household. 

I wasn't given a dietitian, not covered.

I don't use Hairspray, I use Live Clean brand shampoo. There is no Keratin in my shampoo, they aren't vegan. I don't buy repair shampoo.

Tubs for washing? Oh wow that's a great idea! Thank you!

I have no idea what Henna is and i do not use it.

[apprehensiveengineer]

@SahiraHyena

You don't need to worry about rice being labelled gluten-free as there is likely no real difference in the way the rice is packed or sourced. For plain old rice, and many other products that are unlikely to be contaminated, such labeling is mostly for marketing (they probably didn't do anything special to it to "make sure" it was gluten-free). I do a quick visual inspection and give my rice a quick rinse to get rid of some of the arsenic, but this may not be entirely necessary if you're not worried about that. For beans and lentils, you should definitely inspect and wash those as this can remove minor gluten-y residues that might be left on them, regardless of how they are labelled (Open Original Shared Link).

If you are very, very worried about it, Uncle Ben's and Minute Rice are indeed labelled gluten-free. These are common brands that every major grocery store sells in Canada, and should be found in the rice aisle. Clic brand also does dry beans that are labelled gluten-free, and are available at most Loblaws-owned grocery stores (Atlantic Superstore, No Frills etc.). These should be found in with the beans, or perhaps in the "ethnic" food section, depending on the store.

Many brands make gluten-free cornflakes and rice crisp cereals. The cheapest is going to be the Compliments store brand, which is certified by the Canadian Celiac Assoc. It is available at all Sobey's owned grocery stores (Safeway, Sobey's, etc.).

I got $47 a week from your monthly budget of $190 (190/4=47.50).

[SahiraHyena]

I really don't clean my rice and have NO CLUE what to look for.... Gluten residue? What does that even look like?

You forget, I don't have the transportation to go to the store every week. I couldn't even live off of 47 a week if i tried. All I know is, I've tried it before, and I ran out. The money for the bus destroyed my budget, among other things. 

I seen them, but I hate minute rice, it's super gross. Uncle Ben's is no better. 

[kareng]

 - if things are so bad at the house you live in....maybe get a job and a place to live?  It sounds like the people you live with aren't supportive or even care.  Having control over your life might really improve your mental and physical well being. 

People here are  making suggestions based on the little we know from your posts.  Please don't  take offense if they suggest something that doesn't apply to you or misunderstood something you wrote.  

Would it help if the doctor talked to the people you live with?  Maybe explain to them about Celiac disease?  

Someone just making toast near you will not gluten you.  My husband does that all the time.  But it can sometimes make me a bit paranoid and I watch wheat that toast goes after his toaster!  ?

[SahiraHyena]

As I explained in a post before hand, getting a job is not just "going out and getting a job" for me, i have not been able to hold a job for the life of me due to my mental disabilities. 

[ravenwoodglass]

52 minutes ago, SahiraHyena said:

As I explained in a post before hand, getting a job is not just "going out and getting a job" for me, i have not been able to hold a job for the life of me due to my mental disabilities. 

That could very well change once you have been gluten free for a bit.  Celiac can have serious impact on mood and thought functions and after the antibodies resolve you may find more improvement than you ever thought possible. I had one child who came to me one day after being gluten free for a few months and told me 'I feel happy. I never felt happy before'. 

I know how hard it is to live gluten free when you barely have two pennies to rub together. You have gotten some good advice already but I do want to add that you don't have to go with fresh veggies if that is either out of your budget or they are too hard to get.  I have never found a  can or frozen bag of veggies that was just veggies no sauces that wasn't gluten free.  I get broccoli, green beans, corn, peas and carrots all for about a buck a bag.  You can get a good variety and with some rinsed beans and rice make a filling good dinner in no time. I don't know if you have Thai kitchen rice noodles there but they are cheaper than specialty gluten-free noodles by far and very good.  

Hope you are feeling better soon.