Poppi

We don't have a teaching or childrens' hospital here. Just one hospital with a small and overwhelmed emergency room. As good as the idea is, I don't honestly see much coming from it other than a 6 or 7 hour wait in a crowded waiting room and then 5 minutes with an exhausted doctor who takes one look at our obviously not dying child and tells us to make an appointment with a GP.

I had meningitis last summer. It had been confirmed with a spinal tap and 2 CT scans. I still spent 5 hours writhing in pain on a chair in the hallway before someone could see me.

Thanks for the advice.

She is gluten free now (as of yesterday) because I need to get back to where my health was before my husband went away for work. I just can't be handling and cooking gluten foods. I will be getting her vitamin and mineral levels tested but we will have to wait a couple of years to repeat the gluten challenge.

We've had almost a week now with no drywall eating so I am hoping that has passed. I do have a dedicated gluten free cast iron frying pan, now I just have to think of foods she will eat that I can cook in there. She is like most 2 year olds and lives almost entirely on baked goods, oatmeal, fruit, cheese and yogurt. It's not as bad as it sounds as the baked goods are homemade and gluten free, the oatmeal is gluten free and the yogurt is homemade. My mom can get her to eat chicken sometimes and we have had mixed success with adding beef to pasta sauce.

Thanks again. Hubby will be home from Ottawa tonight so we'll have to figure out our plan of action this weekend.

I don't love being Celiac. I would love to be eating french bread with my brie instead of rice crackers or eating my bacon and eggs with real thick flaky wheat biscuit instead of rice flour biscuits. I want to eat street food and enjoy a potluck. I hate that I am cross reactive with coffee.

On the other hand I am eternally grateful that I have found what was making me sick all my life. I love that I wake up with optimism and energy instead of waking up sore, nauseated and depressed. I can do things I never though possible, my life has changed so much in the last few months. At the beginning of April I found it difficult and painful to do the grocery shopping and tomorrow I am taking an 8 hour Kayaking course with my husband. On Sunday I am planning a 10km hike with my teenager. That's more physical activity in one weekend than I used to undertake in 2 months.

I love my life now but I will always be a bit sad about the things I can never have.

I was wondering for those others who have issues with coffee, do you mean any coffee, or can you drink decaf? I haven't had regular coffee for almost 4 years because I've been either pregnant or breastfeeding. I would really hate to find out later that I'd have to give up decaf too! I love putting cinnamon in the brew basket, mmm...

I don't think it's the caffiene for me. I drink lots of black tea and I'll have a Coke once in a while. Sadly, it's the coffee.

You may just have to sit in her room with her until she falls asleep. Or get a video baby monitor, so you can watch her at all times until she goes to sleep. If she does it in the morning when she first wakes up, you could move her bed into your room temporarily. All this would be a pain, but hopefully, it'd be temporary.

And I hear you on the crumbs! I tried letting the kids eat gluten the first two weeks of my diet, and the stress about all the crumbs drove me crazy! On the down side, I can't get an accurate blood test for them now.

Yeah, it's been 2 days since she ate drywall so I'm hoping maybe she'll stop but I'll be keeping a super close eye on her. I've put that super slippery packing tape over the spots she has scraped away and so far she hasn't started any new ones.

Kids + gluten is a disaster for us, eh? My 5 year old is better but still not perfect. He understands allergies because he is allergic to food colouring so he knows I can't have bread or his spaghetti and he needs to try to contain his crumbs. He's going to have to go gluten free too though because Lily will steal his food.

So after our conversation about how gluten affected me and the family history (my Dad is celiac and my Mom is gluten intolerant)she still wanted me to do a gluten challenge and get tested. When I refused she said, "Well, you probably have celiac so you should just keep up the dietary thing." Really?!

It takes for freaking ever to get a doctor's appointment here. Socialized health care is awesome but slow. If I called first thing tomorrow it would still be 2 weeks before I could get an appointment and who knows how long to get the appointment with the pediatrician.

I'm really thinking we just go ahead with our plans to make the house 100% gluten free right away and then she can get the iron test at our next appointment. We can do a gluten challenge and testing when she's older if we want to.

I suppose on further thought I would have to consider the accelerating pica as a failure of the gluten challenge. And man do her BMs stink when she's eating gluten!!

My stiff neck and neck pain is a celiac symptom for me and it's also the one that takes the longest to go away. If I get accidentally glutened most of my symptoms are easing off at the end of the first week but it can take 2-3 weeks for the neck pain and headache to go.

A chiro is always worth a try and massage too if you can afford it or your insurance covers it. If it is gluten they can't fix it though, just take the edge off while the inflammation calms down in your body. Good luck!

POPPI, honey--drywall often contains GLUTEN!!! A carpenter told me this just a few days ago.

Oh heck.

So how the heck do I stop her from eating drywall once we go gluten free? If she keeps munching away at it she'll never be gluten free and never get better (if gluten is in fact the problem). She does it in her room after we tuck her in for the night as well.

Yeah, I want an iron test pronto but my family doctor (who I have always thought was quite competent) wants her to see a pediatrician before ordering any tests.

Lily is eating DRYWALL! She scrapes it right out of the wall with her teeth.

Thanks ladies. My hubby is working out East this week so we'll definitely have to have a discussion when he gets home. When he is home he prepares the kids' gluten foods and cleans up after. Trouble is that he goes out of town fairly often for work. He'll be gone for anywhere for a couple of days to a couple of weeks and it's hard for me to cook for the kids during his trips because they want the same foods they are used to Dad making for them.

I'm still not sure if Lily's pica is a celiac symptom, some other vitamin or mineral deficiency not related to celiac or just a weird thing she is doing right now. I would really like to know for sure one way or another which means continuing the gluten challenge? Maybe?

My 16 year old son won't go gluten free unless he has a test result saying he must. The good thing is that he has his own kitchen downstairs that he shares with the older girls and can eat all the gluten his little heart desires down there without making me sick.

I don't know what to do.

I'm like that too. My heart races like crazy when I get a novocaine shot at the dentist. He told me there is adrenaline mixed into the medication but that most people don't feel it like I do. Last time he was numbing me up for a root canal I thought my heart was going to stop, even the dentist got worried for a minute of two.

I was in with my 2 year old yesterday. It was supposed to be the day of her blood work and the end of our gluten challenge (I don't want to proceed with the biopsy at her age). But my doctor doesn't think she has celiac so didn't want to order the tests, instead she has referred her to a pediatrician who can take a look at her and decide what to do and in the meantime she wants me to keep up with the gluten challenge.

The gluten challenge doesn't seem to be making Lily ill other than the pica which is getting worse but it is making ME sick. Two year olds are bad at containing their mess. At the end of a gluten containing meal there is food all over her part of the table, on her chair, on her clothes, all over her hands and arms and face, in her hair, on the floor. Not to mention the crumbs in the kitchen and the times when she has run off to the couch with her sandwich before I could stop her. My symptoms have been getting progressively worse throughout her gluten challenge and I can't take it anymore.

The doctor was really pushing me to do a 3-4 month gluten challenge and have the testing done but I told her that the two times I've started the challenge I was bedridden within the first day and it took me weeks to recover so it's just not possible. Because I don't have an official test-confirmed diagnosis I am having a hard time getting her to take me seriously when it comes to testing the kids.

I told her there are 3 scenarios:

1) I don't have the test - I don't eat gluten

2) I have the test, it's positive - I don't eat gluten

3) I have the test, it's negative - I don't eat gluten

I cannot and will not make myself sick for MONTHS for the same end result.

Sigh. I don't know whether to continue with Lily's gluten challenge and risk my well being or to just go ahead with making the house 100% gluten free and not have the kids tested at all.

I read something like that at one point too. In some celiacs coffee hits the same receptors as gluten and triggers a reaction. It's a bummer for sure but life goes on, right?

I would never eat at Subway, just too much bread. I am cautious even at New York Fries because they have hot dog buns around.

Yup. My sensitivity has gone up too. My back pain for the past two weeks can only be related to gluten-y kisses and hands from my 2 year old daughter. I haven't eaten out, I've eaten almost no processed food and there is no other reasonable source for contamination. We are doing her gluten challenge right now as she is being tested so I have to keep feeding her food that is making me sick. It's very frustrating.

Wow, I learn something new every day.

I do notice that when I eat a lot of processed foods, even "safe" foods that my back pain starts to slowly creep back up. I feel for you. I rarely eat out and try to avoid too many processed foods but don't have that level of sensitivity - and I consider myself very sensitive.

Thanks for the info on the "dedicated fryers", I have not eaten anything fried since my diagnosis because I haven't found a place with a dedicated fryer at all but now I know better even if I do.

Are you sure it's gluten that's getting you? With such consistent reactions to EVERYTHING processed I can't help but wonder if it's something else.

The school is never going to ban gluten. Can you imagine people not being able to send a wheat sandwich with the lunch!!?

Yup. I have a hard time packing lunches my kids love and my house is packed with gluten free food. A "normal" family wouldn't be able to do and they shouldn't have to.

I can't tell you because I am in a similar situation.

We've been doing a gluten challenge with my 2 year old which was supposed to end today with blood work but instead of running blood work today our family doc referred us to a pediatrician and wants us to keep up with the gluten.

Our problem isn't that gluten is bothering her very much, she seems happy but she has been eating drywall and dirt so there is something weird going on. Our problem is that having her eating gluten multiple times a day is making ME sick. 2 year olds are awful at containing their crumbs and short of putting her back in a high chair, washing the chair, changing her clothes and bathing her (including washing her hair) after every meal it's impossible to ensure crumbs aren't all over the place.

I'm not sure what to do at this point.

I'm so nervous about the blood test tomorrow! She's never had a needle poke and has no idea what's coming. I'm thinking about getting some Emla tomorrow morning and numbing up the inside of her elbows.

She is being tested because she has dropped down from the 77th percentile in weight to the 22nd in the last 4 months. She's also developed pica. She's eating everything from metal window blinds to drywall!

I am so glad to be done with her gluten challenge. It might not be enough though, we've only been pushing the gluten for 10 days. She has never been totally gluten free but definitely gluten-light. I don't generally prepare gluten foods for her so on weekends they get lots of sandwiches and toast made by Daddy and on the weekdays mostly gluten-free foods from me. I'll make a can of chicken noodle or something but I try to avoid handling bread.

The past week my hubby has been working in Ottawa so I have had to prepare gluten foods for her and my body hurts. I've tried to be careful but 2 year olds spread crumbs and kisses all over the place and she has definitely been contaminating me. Thank goodness it's over.

I am not planning on proceeding with the biopsy at this point so one way or another tomorrow she will be gluten free as we have decided to make the whole house gluten free. It's too hard trying to keep the contamination under control with small kids.

Wish me luck tomorrow.

Tim's would be a hard place to work. I would definitely be concerned. Do the donuts come in frozen and are baked there? Is there flour being used?

I think it would be really hard to avoid contamination. You must be vigilant about wearing gloves and never touching your face or your food until you've come home, put your uniform in the wash and taken a shower.

My strategy with my two boys was to be the person to bring in the big treat.

They are both very allergic to food colouring so I made sure I was always the cupcake mom. At the "meet the teacher" meeting I would take the teacher aside and tell her that I was volunteering insisting that I be the cupcake/treat lady for the year. Other parents were free to bring in the cheese and crackers, fruit plate, juice or whatever but I was responsible for the big exciting treat.

It has always worked so far. Kids will shrug their shoulders and deal with not having crackers or veggies but nobody wants to be left out of the treat. I always took other kids' allergies and intolerances into consideration as much as I could and had conversations with those parents so that I wouldn't accidentally harm their kids.

It is sad when the school has sports day or reward days and my son doesn't get the treat that is offered but we have a deal. Any day that there is a birthday cupcake or sports day popsicle or other shared treat that he can't have we will stop at Dairy Queen on the way home for ice cream. Leaving a box of safe goodies with the teacher is a good idea too.

The cross contamination issue is harder. There is a boy in my son's kindergarten class who is Celiac and also allergic/intolerant to dairy, soy, almonds, rice, strawberries, pineapple and kiwi. The school and classroom have made no accommodations for him whatsoever but the whole school is nut free regardless of which classrooms the nut allergic kids are in. It's very frustrating.

Volunteering in the classroom as much as possible would be another strategy. It would accomplish a few things. You would make a friend and ally out of the teacher which you need. You would see how the classroom operates which would allow you to develop coping strategies with your daughter and it would allow you to protect her on treat/party days.

There will be mistakes. There will be bad days and it's sadly just part of coping with the real world which is not going to bend over backwards to accommodate us.

I dislike it when bloggers get cocky. I've seen bloggers get popular and all of a sudden their blog is going to save the world and they're quiting their jobs to "get their message out".

Other than that I love good recipes and meal plans.

Well, I am a mom and I love to cook so you're right, that makes day to day life much easier. I refuse to do without my favourite foods so I am slowly learning to remake them at home.

The frustration for me comes in other ways though. We had our children young and spread out. I'm 34 and my kids are 15, 6 and 2 and we have 2 Vietnamese girls who are living with us for a few years as well.

Once our kids are grown my husband and I plan to travel the world. I LOVE food so I had these big dreams of eating my way around the globe. Street food, local cuisine, breads, cakes, cookies, desserts... I wanted to eat everything I could get my hands on in every country we could possibly get ourselves to. We've been saving up a few dollars at a time for several years and have several more to go before we can start.

But now what? I can't eat street food in Thailand anymore? I can't blindly enjoy sushi in Japan with all the lovely soy sauce based toppings and dips, I can't eat Calamari in Greece or have a croissant in Paris. A lifelong dream down the toilet. It's devastating.

We will still travel but it will look very different. I'm sure it will still be amazing but it won't be the same.

I'm a silver lining person though so I try to remind myself that although I can't eat everything I want I now have the energy to do the things I always thought were beyond me. I can climb mountains, raft down rivers, hike through forests, surf in the worlds' beautiful oceans. My Celiac diagnosis has made my life better but it's not always easy to see that.

1. This is my biggie, How come a lot of people have said that they had to get new utensils, and pans and such? I can understand things like butter, and some of that stuff. Even cutting boards, but really confused as to how gluten could stay on metal knives?

Serrated knives are impossible to clean properly so if you will be sharing a kitchen then don't use the serrated knives, stick with the straight blades and you'll be fine.

2. I got the blood work, and came back negative for celiac's. However, I got an endoscopy, and came back positive, for a mild case of celiac's? I'm not sure what confuses me more, the fact they called it mild or the fact I came back negative at first.

Blood work and biopsies are not an exact science. The blood work is completely dependent on how many antibodies your body is pumping out in response to the gluten and the thresholds the lab places on their testing. The biopsy depends on the skill of the surgeon, whether they sample the right areas and whether or not the person who examines the samples has them lined up just right etc... This is why many of us have chosen to be diagnosed (or self-diagnose) based on symptoms and/or family history and/or diet results and not go through the testing at all.

The "mild" celiac may just be because they sampled an area without a lot of damage or perhaps you are lucky enough to have discovered your problem before the damage became severe. This does not mean you can cheat and eat gluten sometimes because your celiac is "mild"!

3. I didn't even know I could withdraw from gluten, but how long does it take to recover from/get over?

Not everyone has withdrawal. I didn't and I am (was) a baker, eating and baking with wheat flour every day for years.

4. How long before I really begin to feel better, I read somewhere it can take 3-6 months for children, and 1 to 3 years for adults. Is it really going to take me a year or more to recover? I understand that it means intestinal repairs, but it is a bit unnerving to think I won't be getting full nutrients for a good year or more.

I felt better within the first few days but this does not mean I have made a full recovery. Some people take a long time to get better and some people improve very quickly. I feel a little bit better all the time and am slowly discovering that my body is now capable of things I have never done in my life like hiking and kayaking and playing with my kids.

5. I'm still living with my mother, [due to the fact I have seizures.] She doesn't plan to go gluten free with me, and I'm not going to make her. She is 53, and I'm 21, but she also just got dentures and well bread and such is still a bit of a soft food. We already planned on getting me a new cutting board, [mind you I just put wax paper over our old one for now and call it a day.] However, is this enough? We really can't afford new pots and pans and all that jazz. She is prepared to help me in anyway possible, i.e. I'll have my own butter, my own stuff like that so...

Having a mixed gluten/gluten-free kitchen is tricky. There needs to be a specified gluten area and/or a specified gluten free area. If your pots are non-stick then you really need to look at replacing them. Even just one or two to start with. Non-stick pots were keeping me sick.

Wooden spoons, plastic cutting boards and plastic utensils are also common culprits. Luckily things like that are cheap.

You can keep using cookie sheets but line them with parchment if you bake on them. I baked gluten free bread in a non-stick loaf pan and got really sick.

6. How come I see people who get worried about gluten in shampoo, or soap, or things that would [well, should] only come into contact with the skin? I thought celiac's really only effect my small intestine?

I don't want gluten in my body products because I use my hands to touch my food and I don't want them coated in gluten. Also, hairspray gets inhaled, lipstick gets eaten, shampoo and conditioner occasionally run into your mouth or eyes and an inflammatory immune response can be set off my mucous membrane contact.

7. Why do I see even more people cut out dairy, soy, and the such? I'm really confused by that. I'm not good with drastic change, and for now I only plan to eat food that is gluten free.

What you are seeing there is people who are discovering additional food intolerances once they go gluten free. Celiacs often have multiple food intolerances because their intestines are damaged which can impair the ability to digest the proteins in dairy etc. For many people they will be able to eat those foods again when they heal but others cannot. I can't tolerate coconut, food dyes or coffee but do okay with dairy and soy.

8. Also, I have been dealing with joint problems, underweight, anxiety issues, stomach pain, lack of wanting to eat because it hurt to eat [i kept choking on food], and then the stomach problems after that, acid reflux got really bad also. It got to the point that for the past few months, I was eating considerably less, but had also changed my diet to a more... "calmer" diet in my opinion. Drinking mostly water, eating mostly fruits, cut out most soda, and such [Mind you, I did have a few pieces of bread and such so I wasn't gluten free.] I had assume this was due the various wonderful meds my doctors had moved me on to prevent seizures, something like 11-20 pills a day for a few months there [Not including aspirin, I was given bottles of that for my past two Christmas's] . I was told most of my problems came from that, however... could this be the celiac's? Could I have had celiac's most of my life? Just a question of wondering.

Also, I've been medicine free, and seizure free since march. [Well, mostly medicine free.]

Any other helpful tips? As of right now if I've been unsure of anything, I've either google'd it or just gone with my "gut" and avoided it. If I feel that I am still having issues, I will go into what I consider more extreme measures, and clean up things more or cut things out. However, I'm always been one to be cautious and optimistic rather then drastic changes all at once. Also sorry for the very long read... ^^;

Possibly. I have found health problems I have been plagued with all my life are going away now that I am gluten free. for me celiac has caused:

Mouth sores

Muscle spasms

Severe back and neck pain

Joint pain

Osteoarthritis

Depression

Headaches

Constipation

Anxiety

Difficulty maintaining weight

Vitiligo

Unexplained rashes

Poor dental health

Constant nausea (I have been nauseated daily since I was a small child)

Chronic fatigue

Miscarriages

Infertility

Difficult pregnancies

Good luck on your journey! It's exciting once you start feeling well.