skullgrl

Thanks for the heads up! I just bought the book, should get here on Monday, I'm excited.

I had RND (the child version of CRPS) and I can sympathize with the pain you must be feeling and the doctor stuff. I found water therapy to be very helpful and pretty relaxing. If you can't find someone who is covered by your insurance then perhaps there is a community pool nearby that you could use. After not being able to move too much, the weightlessness in water is lovely, even if you aren't moving too much in it I found it helped loosen me up.

If you were taking your Adderall for AD/HD and you are now no longer taking it, this can adversely effect your will power/impulsiveness as well as remembering what you can eat. I have ADD and take Concerta for it. I know I am a complete air-head with out it and would probably accidentally gluten myself consistently. If ADD or ADHD is the reason for taking the Adderall then please consider the fact that your brain is missing some chemicals that help you function like everyone else. Its a chemical imbalance in your body. 

I think you may wish to see someone to see if you have depression. A lot of us have it not just because of what gluten does to you but because we have to deal with restrictions, people questioning us, being ill etc. etc. etc. I have had to deal with depression for these reasons and I can tell you that getting help is well... helpful. It can really change things for you, as it did me.

I know you don't get terrible gastrointestinal symptoms but that doesn't mean it effects you any less. You need to realize that if you continue to eat gluten, it could kill you, a lot earlier meaning less time with your child. 

I think getting a formal diagnosis would help with other people, you can also write off additional food costs. Try getting the test for the genetic marker, this in addition to the positive biopsy results might be enough for a doctor to get a formal diagnosis. You need to just set boundaries and make sure you always have food on hand. When leaving the house it needs to be a priority. Tell people no, then firmly no and then if they continue to bother you about it you need to realize that your health isn't worth it. No one would want someone recovering drug problem/smoker around people who push it on them, you shouldn't be subjected to it either. A good line, if you need one could be,"Would you so persistently push a chocolate bar on me if I was a diabetic?" Some people may never accept your illness and you need to accept that and make sure you put your health first when around them or limit your time with them (obviously, not really possible in some cases).

Thanks for all the replies everyone! The community here is so amazing. I don’t think I was as clear yesterday with my post as I could have been so I will attempt to clarify. (Brain fog is no fun) I probably should have waited until my mind cleared a bit before posting but I was really angry and needed to vent.

I should first say that while my kitchen is gluten-free, the floor of said kitchen is probably not. Also, there were a lot of problems awhile ago with people not washing their hands before putting away the dishes. Mainly my father who would have a beer and then put away the dishes.

Kareng – That is a possibility and it actually happened with me once with mushrooms I didn’t wash as thoroughly as I thought I did. My boyfriend ate the exact same ones and was fine but I really wasn’t. I hope it was just that rather than gluten because the effects went away much quicker than those of gluten.

Pricklypear1971 – That could definitely be part of the issue. My brother wouldn’t be the cause of this but my Dad is likely the culprit if that is the case.

Bartfull/Nikki2777/IrishHeart – I don’t believe there to be any malicious intent, I’ve educated them both, and my mother has as well. I think it comes down to apathy or not thinking about the consequences of their actions. Most of the times I’ve been glutened (not including the beginning, because I had NO idea what I was doing. “Hey, Pizza Pizza has a gluten-free pizza, let’s order that.”) I can trace it back to one of them. Although mainly my father.

GottaSki – It took me a long time to figure out that dairy isn’t my friend right now. I think I might try looking to see if I have any others.

I would wash the cap off if it touched the floor - germs, dirt, cat hair being more an issue than gluten. I live with 2 (3 during college breaks) gluten eaters. I don't get glutened from crumbs I cannot see on computer keyboards, etc. obviously, you wouldn't be touching things with big crumbs. I think the more likely is:

someone using the PB, as an example, and putting the knife back in a few times

Using the colander that drains gluten pasta

Someone forgetting and putting the spoon they are stirring gluteny pasta into the gluten-free pasta

Putting the top of the ketchup or BBQ sauce onto the gluten bread ( not squeezing or pouring an inch above the bread ( I tell them to pour onto the meat in case they slip) really, this habit is another germ issue and for everyone's protection).

Grabbing out cheese slices after they get the bread out instead of before

Eating something you assume is gluten-free and would be surprised to find out it isn't - corn flakes and Rice Krispies are 2 examples we see a lot on here.

All our food is gluten-free (and I don't buy anything that has a chance of CC) except for the occasional pizza the rest of the family orders when I'm not around. After which they clean the table. The problem is we don't have any of those things in our house.

I was diagnosed 7 months ago roughly and I've been gluten-free ever since. Our household has been pretty much gluten-free since then (obviously the beginning was rocky). The only time there is gluten in the household is once in awhile my non-celiac family members will have something gluten-y and then promptly clean the area where they consumed it. Nothing is allowed in the kitchen. 

Anyways, I've gotten consistently glutened here in the past and December was actually a pretty good month. Last night I sat down at dinner and after I asked someone to grab a drink for me (I need an x-ray to confirm but the Dr. said my foot is probably broken). My Dad poured me a glass of ginger ale and he accidentally dropped the cap on the floor. So my Mom and I said don't put that back on the ginger ale and spoke for a minute about it. When we finished speaking my Dad reaches for the cap and goes to put it back on. We realize by the time its just touched the rim and told him no! Turns out he wasn't listening at all to us. So I said I wasn't going to drink from that one and that I couldn't. My brother said, "It only touched it a little, its fine." I reiterated that I couldn't.

Fast foreword to today, I was sitting on the couch and my brother grabs me a drink and I take a big sip and look down and see a ginger ale bottle without a cap and look over to the kitchen where the new bottle. There really should have been some sound effect for me realizing had just happened. I told my brother and he just said it would be fine. Well, positive thinking can't fix glutening. I have a very clean timeline to glutening - it pretty much always takes 30 mins so I know where it came from.

I live at my boyfriend's half the week and his apartment is not strictly gluten-free and even though I quite sensitive I've only gotten sick there once. (I touched his keyboard and absentmindedly touched my mouth) I just don't understand why I always have to come home and get sick. I can't remember whether it was Nov or Oct but I was sick 3/4 of the weeks. I also feel bad for my Mom who works really hard to try and keep me safe from my brother/dad. It's really hard trying to heal myself with this going on.

Thanks for reading

Definitely start taking those fiber supplements - make sure they are gluten free and from a reputable source. Supplements can sometimes but iffy on their gluten-free status. When you start the gluten-free diet a lot changes in the core of what you eat and that can throw off your digestive tract. If you've ever had a dog or cat and switched their food suddenly you can see a rather um, powerful example of this. You really need to make sure you're getting enough fiber in what you eat, so more veggies and more fruit. A simple diet of mostly whole foods and not too much preprocessed stuff is the best at the beginning. (Wish I had come onto the forum sooner to realize that.)

Hey,

I'm from Ontario as well and have suffered from some Celiac induced psoriasis myself. My Mom's psoriasis also turned into psoriatic arthritis recently. If you need any help finding places to shop feel free to message me, I've only been doing this about 6 months but I've learned a thing or two. If you live near one of Organic Garage's three locations I suggest heading to one because they have a pretty awesome gluten-free selection (some prices are really good others are not but the selection is great). If you can you may also consider cross-border shopping. gluten-free food prices and selection are amazing in the US. Not to mention the difference in tax (11.7$ here vs. 0.74$ there).

Hey,

I think you should still consider trying to force yourself to get tested. I know its hard! I had a very bad experience with my wisdom tooth removal but I can tell you the biopsy was nothing compared to it. If you were eating gluten-free at the time of the test that could have caused the negative. If you do have Celiac disease then you will be able to claim some tax exemptions for the difference in food cost which could really help. Great job on quitting smoking! 

Just remember that there are people on here to support you, perhaps you could find a support group to help you out in your area? 

Feel better in the new year! 

I'm not sure if it's available to you but Why not try asking for a Rectal Challenge (I can not say that without giggling like little kid)? That way you don't have to ingest any, they just place a little where you're sensitive and see if anything happens. Obviously, it's still a bit damaging but not as much so.

I tried Matzoh balls right before I had to go gluten free after my diagnosis (my Boyfriend is Jewish) and I found an amazing recipe in Open Original Shared Link for quinoa flake matzoh balls. I call them my Faux Matzoh. They aren't an exact taste match but I think they are pretty awesome. I've been considering grinding the quinoa flakes to make a finer ball but that's a lot of extra work for a recipe which is essentially is throw some stuff together in a bowl, put it in the fridge, ball it up and boil it. My Mom and I make huge batches and freeze the rest. 

My Mom just found me a cookbook with a gluten-free Sufganiyot recipe in it which I must make this holiday. I make them with the traditional jam but also... nutella. So good. He didn't know what they were just that these amazing tasty doughnuts magically appeared everywhere suddenly so I researched them and made them homemade for him. He's er... secular, save for the occasional family event.

Thank you all for listening to my story.  Your information will help me and my son learn more about this disease.  I am going to check into this Paleo cookbook.  I did not know that I even have to dedicate utensils to my cooking.  Will do.  I wish we could take a vacation but.... just started a new business and the finances are not there right now.  I think I will take him to a movie today and spend some quality time with him after we go shopping for new utensils

~Is it safe to buy gluten free pizzas from a local grocers deli?  I am going to get on the mall and check out some of the gluten free products they have to offer.

Thanks again.

Brenda from Wisconsin

It is not safe unless they specifically say they are made in a dedicated facility. That kind of product generally caters to fad dieters rather than celiacs. To give you an example of how bad it is, if I touched a surface that I ate cookies on over 9 months ago (before I was diagnosed) and touch my mouth then I will get sick. This actually recently happened.

You need to check everything. Even his shampoos, soaps and anything that would somehow find its way into his mouth. You need to scrub down your kitchen and replace everything with a porous surface and any small appliances that have plastic that comes directly in contact with food. You need to all train yourselves to wash your hands before you touch any food that he will eat. If you touch a surface that could have been contaminated, rewash them.

Never assume something is gluten free, dig around on the internet until you find something on the company site that says it is. You wouldn't believe the things that have gluten in them. I've found an orange soda I used to drink that had a type of flour in it. I'd really love to find out who puts this stuff in these products.

I'd also suggest giving his sheets a wash or at least switching out his pillow case. New kitchen towels are a good idea as well.

Give him time, the combination of losing a food that is a big staple of our diets, being a teen and having to deal with a chronic illness and the gluten and probably carb/refined sugar withdrawal is really hard. It really helps to know that there are a lot of people out there going through the exact same thing. You may need to help him figure school (like GretaJane said, except I have no clue what a 504 is, maybe not a thing in Canada?), because it took so long to diagnose my Celiac Disease I missed a number of years of high school and its a real pain finishing it now (I'm 20 and really just want to move onto secondary education).

Best of luck

I give myself weekly B12 injections, they just changed what the lowest normal level is. I used to give myself monthly but I knew I wasn't crazy when it would only help for a little bit! They help me quite a lot. My doctor said that for 2ish months try once a week, then go to every two weeks and then once a month. You need to build up your stores again.

Taking medication with gluten in it was foolish and really dangerous, there should always be an alternative medication or another company who makes it that contains no gluten. Please be careful!

Hi, Judging by the time line of my health problems, my celiac disease showed up around your daughter's age unlike her I wasn't diagnosed until this year (6ish months ago) mainly because mine was largely asymptomatic.  Or I didn't have the standard symptoms that people/Dr,'s associate with Celiac disease. (I wasn't pooping myself/wasting away etc.) I even have had big issues with scalp psoriasis. I really glad your daughter's Celiac disease got caught so early, I really wish mine had too. This doctor sounds like they know nothing about celiac disease, take your test results and run!

I can guarantee you if I was eating your daughter's food right now I would probably not be doing to well. For example, my boyfriend touched his keyboard, wiped his mouth and then kissed me which glutened me. I've trained myself to never touch my mouth without washing my hands first. I can't have anyone touch anything and then continue to prepare my food.

If you are using the same nonstick pans for her pancakes and the gluten ones then hers will contain gluten. Please read up about cross-contamination. Here are two very good sources.

Open Original Shared Link

Open Original Shared Link

I'm glad you found this site, its a huge help Best of luck on all your gluten free adventures.

One thing the muscle weakness and pain could be; my lovely rheumatologist told me they JUST raised the acceptable level of B12 from 190 to 700. How do they get it that wrong? Pernicious Anemia could be the cause (low b12 causing low iron).

My favourite response so far was at an Barmitzvah party for my Boyfriend's cousin (nice kid). One of his relatives, a girl, around my age asked about what I was eating/did I bring my own food. I said, yes and that's because I recently got diagnosed with Celiac Disease. After explaining the basics of it (no wheat etc.) she said, "I wish I HAD THAT! That way I would actually have to eat healthy. You must eat so healthy."

She wishes she has it. Still makes my brain implode with anger juices.

My grandma would always pop popcorn on the stove for me when I was little so that's what I've gone back to. When I'm too lazy to do that or want something like movie popcorn (movie popcorn used to be one of my fav. things, glad I can still have it!) to take to a movie with me I buy Popcorn Indiana. Their stuff is so ridiculously tasty. The aged white cheddar one tastes exactly like smart food. Like everyone said, its hard to digest and you've just started the gluten-free diet.