mommyto3

...and in canada, isnt there a legal/monetary advantage to having the "official" dx??

I think you can claim the Celiac on your income tax so you get a deduction for the extra cost of food but from what I've read, they make it so difficult to calculate/corroborate that the effort isn't worth it for most.

I really am considering switching doctors. The only trouble is that there are 5 of us including me and my husband and finding a doctor to take on that many patients (let alone 1) is hard.

Thanks for the suggestion to ask a dermatologist but I doubt she'd even give the required referral. We're hoping that the naturopathic MD we see for allergies will test him. He's very open to most things and doesn't have the usual "god complex" that most MDs have.......

I can't believe how uneducated some doctors are! It's scary....

Lately my husband has been breaking out in really bad rashes around his armpits that are super itchy (he hasn't switched soaps or deoderants or anything like that). The skin eventually breaks in places as he scratches and then the rash kind of scabs over in places but is still really angry looking and inflamed. He used to get this behind his knees periodically and we always felt it was related to food because it would flare up a couple of hours after eating. The armpit rash is the same but just in a different place....

Last year both me and my son were diagnosed with Celiac and my husband's father also has the disease. Yesterday my husband went to our gp and showed her the rash and asked to be tested for Celiac. Her answer was an absolute NO because he doesn't have gut symptoms. She said there's no way he could have celiac without gut symptoms and when he tried to explain that many people with Celiac do not have gut symptoms (our son included) she got irritated and told him the test would be a waste of money and she wasn't ordering it. She gave him steroid cream and sent him on his way without even making an attempt to try to figure out the cause.....

I am so upset by this. Our doctor is often closed-minded to suggestions from patients (she hates it when you try to give any insight into your condition) and she's a pharmaceutical pusher. But to go so far as to refuse to order a simple blood test when two direct relatives have the disease? That is just ridiculous. We have considered switching doctors before but it's hard to find GPs where we are (Canada).

I just can't believe a doctor could be so misinformed and petty.....just had to vent!

I hear a lot of mention about Lyme disease on this board and people who are tested for Celiac are often tested for Lyme too. Is there a connection? Just not sure why these two seem to be mentioned together all the time.

Thanks

We were spending $1200/month for a two adults and 3 kids (1 adult and all kids on gluten-free) but I've since cut out most of the organic fruits and veggies to save money so we're sitting at about $1000 now. Our Udi's bread alone costs us $15 - $20 per week!!!

Save-on has it in BC

How much is the Udi's bread going for? I know there's one store in Toronto that carries it but they're charging $7.50 per loaf! I cross the border and get it for $4.00 per loaf in Buffalo.

I really have to second the suggestion for Udi's bread. My life was sandwich-free until I found Udi's. Now I bring a sandwich every single day to work and it's AWESOME!

Can somebody provide me with the name of a lab who tests (reliably) for Lyme? I've read about a lab in California but I can't find the name. I'm in Canada and I have a lot of the symptoms. I know when I go to my doctor she is going to give me a hard time (she's not very approachable) so I want to research the testing on my own to prepare in case she won't test me for Lyme.

Thanks in advance!

Hi all,

I've been having this terrible twitching all over on and off for a couple of months now. It seems to be getting worse and I now have shooting nerve pains, burning and some pretty massive twitches (some that jerk my whole shoulder). Not liking this AT ALL.

I've had mild twitching on and off for a few years now but nothing like this. It seems to me that this whole episode was sparked when I took a course of antibiotics two months back. As soon as I took the first pill the major twitching started. That can't be a coincidence. So of course I've been scouring the net trying to find out what the heck could be wrong with me and I come across "leaky gut syndrome". I see to fit the profile pretty well and I've read that it can cause neuro symptoms for some.

Can someone please tell me how I go about getting diagnosed with this? Do I visit a naturopath? How do they test it? I don't even have a clue where to start....

Thanks

Sorry I don't have any advice for you but I can say that my daughter behaves much the same (without the head banging). She's only 2 but she has the worst tantrums I've ever seen. I've honestly never heard a child scream as loud as mine and the violence of her behavious is really disturbing. She's constantly mad at the world and we also "tip toe" around her for fear of setting her off. She's not gluten free but I've been toying with the idea for a couple of weeks. My son and I both have Celiac and I fear that she has it too. Now after reading your post I will definitely put her on a gluten free diet and see what happens. I tried to convince myself it was just the terrible twos but I think it goes beyond that.

Just want to let you know that you're not alone and I understand how tiring it is. Especially with the head banging, you must be at the end of your rope. Is there any possibility that he's getting some cross contamination?

I'm new here, so I'm still learning, but this is an exact diagnosis of one of the symptoms I am watching closely. I was "dx'd" about 7 years ago with "benign fasciculations" by my family doc. He said it was stress and indicated that my active 3 yo at that time and my dh working fulltime and in school fulltime was the culprit.

Fast-forward seven years (with periods of no twitching and other times when they were fast and furious!) and when I went gluten-free 6 months ago (with newbie mistakes, of course!) that is one of the unexpected things that definitely decreased and seems to be mostly gone.

Last week I left my gluten-free communion at home and made the choice to take a tiny crumb of the wheat bread rather than not partake (I had been planning a gluten challenge about 6 months in anyway, so it seemed like a good opportunity). I had "d" the next morning and for the past week have had fast and furious twitches. Hmmm....

I'll be watching this for others who might have something similar!

I'm glad to find someone else who also has BFS. Mine started after back surgery about 10 years ago and during the recovery I was SUPER stressed. I also think that's when the Celiac was triggered. Saw a neurologist who said I have an "overactive nervous system" whatever that means and said the twitches are harmless. He told me not to drink coffee.

I've been pretty good over the last couple of years but after being gluten free for 6 months I ate some questionable buffet food and the twitches started up like crazy. I also got burning down my arms and hyper sensitivity along the inside of my legs. So annoying.

At this point I just question the cause. Is it being glutened? Is it stress? Is it something else I'm eating or those four Advil Cold and Sinus pills that I took the morning of the buffet? I'd just like a clear cut answer.

Glad to hear that I'm not alone in this.............

You mentioned you often feel like you have a UTI but you don't. I felt like that for probably 4 years, on and off, before I found out I had celiac. I had really bad bladder irritation which would cause me to feel like I had to go all the time. Only difference with a UTI is that you have the burning - I didn't have burning with the irritation which is how I knew it wasn't a UTI.

I just pretty much learned to live with this until I started having all the terrible gut symptoms of Celiac. I visited my doc who was sending me for an ultrasound and she suggested I try gluten free while waiting for the tests. The first week I went gluten free was like a miracle for me. My bladder symptoms completely resolved within a day and I FELT GREAT for the first time in years.

Since going gluten free I have not had that UTI feeling. And the funny thing is that I even had a real UTI but didn't get any symptoms. My doc found it through a routine urine test. Go figure!

Just wanted to let you know that bladder irritation is a pretty common symptom of Celiac.

I'm packing the family up and crossing the border tomorrow to pick up some Udis products and hit up the Wegmans.

I'm from Canada and we have a lot fewer gluten free products than you folks in the US.

Can anybody give me suggestions of some of your favourite gluten free products from Wegmans (or even other large chains) so I have an idea what to pick up? I'm sure I'm not even aware of half the products available in the States......

Thanks!

Anybody else diagnosed with this?

I had crazy twitching, vibrating, little electrical shocks, hyper-senstivity (especially along the seams of my pants!)all over my body a number of years ago for a quite a while. Finally went to a neurologist back then who said I have BFS. He said it's an "overactive nervous system" and told me not to drink coffee. I think I was diagnosed about 10 years ago and this condtion seems to come and go. I'm fine for a few months and then bam, it starts up again.

Anyways, I got to thinking that maybe it's related to ingesting gluten. I went gluten free about 6 months ago and all was fine. Now over the last month or so the damn twitching has started again. I did have a couple of questionable meals and I haven't been obsessive about cc. At the same time, I've also been under some stress....

I'm not sure if it's a gluten reaction, mineral depletion, or just good old unexplainable BFS like the doc said.

I'd appreciate any input.

Thanks

I still struggle with the "what's causing this symptom" question daily. Often I can trace feeling crappy back to not being careful enough but sometimes I just sit there with a big question mark. Maybe it's addt'l food intolerances now like one of the previous posters suggested. Who knows.

One thing I'm certain of is that I get tired of the constant food analysis that goes along with Celiac. I long for the days when I could just eat anything and not think about it at all............

Blueberry Fritter from Tim Hortons!! Ummmmmmmmmmmmmm.

I don't have any advice as it's so hard to stop kids from sneaking it when they have minimal symptoms. My son is the same. He's 7 and all of his symptoms are behavioural (so he doesn't even realize). That makes it so hard. If given the chance, he will totally eat gluten. For instance he's at a birthday party right now and I know he'll eat the cake if the mom in charge there gives it to him (which we asked her not to). It would be so much easier if he got bad gut symptoms....at least that would deter him. Not that I'm wishing discomfort on him but how do you tell a kid not to eat something that he can't feel is hurting him?

Just wanted to let you know that we're in the same boat!

An ER doc diagnosed me with "gallbladder spasms" after they couldn't find anything on an ultrasound for my excruciating pain. I'm like, gallbladdeer spasms huh, you think so? Duh, of course the thing is in spasms! But what was causing the spasms??? To me his diagnosis was just another way of saying "we have no idea". He gave me pills and sent me on my way but I never filled them.....

I had these pains for 12 years to the point of lying on the floor for hours and just waiting it out in horrible agony. Sad but I kind of learned to just live with it. Since going gluten free 6 months ago I haven't had any episodes (knock wood!)

Good luck!

I have crazy neuro symptoms just like yours that come and go. And sometimes I swear that I haven't eaten any gluten. It actually seems to have gotten worse since going gluten free but I'm thinking my gluten sensitivity has just skyrocketed so now it only takes a tiny bit to get my nervous system going. It really drives me nuts! I'm actually at the end of a flare up right now and I think it was an accidental glutening on Thursday. I had to do a presentation and decided to try to be like everyone else and eat the luncheon food (staying away from obvious gluten). But of course, I know gluten was in there somewhere and sure enough, Friday morning the twitching and stinging and burning and jerking starts. Funny thing is that I totally forgot about eating the buffet food and thought it was because I had caffeine Friday morning. Duh.

I've had this neuro stuff for 10 years and only now am I coming to think it's the gluten. It's still hard to wrap my head around it. I'm sure I'm deficient in Magnesium and B vitamins but still trying to figure out how to supplement correctly. All I know is that liquid Magnesium really seems to help.

This neuro stuff is enough to drive you mad. I've been worried about MS, ALS, Lyme Disease and just freaking being out of my mind! I sure hope it actually is the gluten because I can control that...........

Good Luck

If you can afford it, I had my son tested through Enterolab. I refused to put him back on a gluten diet for the testing and with this test, you don't have to.

Good luck

Sorry....title should say "Reverse Engineering Udi's"

My son and I are hooked on Udi's. Two problems: 1)It's very hard to find here in Toronto and when you do find it the price is $7.50 per loaf and I have to drive across our very busy and congested city. 2) I pick it up in the US sometimes but that is also a huge trek across the border.

At 3 loaves a week (they're so small!) it's getting pricey. I saw an earlier huge thread of people trying to duplicate the recipe. In the end, I don't think anyone was successful but if you were please share your recipe!!!

I'll continue to drive all over and pay a horrendous amount of money for Udi's if I have to because we can't go back after trying it...but I'd rather save time and money if I can learn to bake it at home

I have to say that your symptoms sound exactly like what I get with hypoglycemia. The whole system kind of goes haywire so maybe that accounts for the bathroom part of it?

Good Luck

Thanks everyone! Can't wait to get bakin

Sorry you had to end up here with all of us but Welcome!! This is a great forum full of supportive and incredibly knowledgeable people.

Everything you're experiencing is totally normal. It's a huge life change and a difficult one at that. Scour this board to find out all the foods you can eat. All the info you need is right here! If you don't know something, post a question. Someone (if not 15) will answer!

You will eventually get into a groove, learn the products you can eat and the food you can make. It just takes time. You will start to feel better and better and trust me, it will all be worth it.

As a little tip, I just discovered Udi's products and they are absolutely FABULOUS! My son who's 6 (and also Celiac) is the pickiest eater ever and he just loves everything Udi's. Their products will make your life a lot easier and more enjoyable.

Good luck. Just give it time, you'll adapt

My relatives were recently "upset" because I brought my own toaster to a cottage that didn't have a toaster and they didn't understand why they couldn't toast their whole wheat bread in it. I could feel the eye rolling behind my back.

I wanted to yell but didn't......in hindsight I wish I had!

Good for you

I found the best gluten free cookies EVER at a local gluten free bakery but they're so expensive that I can't afford to keep buying them all the time. Compared to these cookies, the packaged stuff is totally gross. My son loves the bakery cookies but at $1 each (not that big either) it's getting a bit ridiculous.

I'd love to learn how to bake a really good gluten free chocolate chip cookie for him. I tried the premade mixes and they are just awful. Does anybody have a really good recipe that I could try?

Thanks!

ps - I'm a bad cook and baker so I need really good instructions