Recently Diagnosed

[maribeth]

good morning everyone, a coupe of months ago i was diagnosed with celiac disease via blood tests. i was told i have to go for a biopsy and am still waiting for the dr's call. i have mentioned it to my dr twice about the appt with the specialist and she says it will be faxed in. i'm still waiting-whether it's my gp or the spec someone isn't following thru with their job. i have cld the spec and only get a machine gggrrrrr. in canada we have to be referred to a spec. so my hands are tied. i have been holding off on starting the gluten free diet until after the biopsy but have been reading the posts and figure i should start it now so as i feel better. i know i've had this disease for a long time as i've had the symtons for a long time. i have developed osteoperosis/arthritis(my feet kill me in the morning or when i've been sitting for a long time and i get awful muscle twitches at nite or when i've been sitting for a long time) went thru an early menopause where i just stopped having periods at 49- a wonderful 50th b'day present lol. i had constant d for about 2 months and was always bloaty and felt 5 months pregnant and seemed to gain a pound a week and couldn't figure out why as what went in went out just as fast. i went for numerous tests and all came back with no problems until my blood tests showed up celiac disease. i was put on questran to stop the d which it did and i have generally one bm a day unless i eat something that i shouldn't. i get very bad gas which i'm presuming is related to celiac disease and my stools are very lite brown in color. at 55 my whole life style has to change which i'm willing to do but know it'll be a challenge but if it makes me feel better i'll do it. i've decided to start the diet instead of waiting for the biopsy as who knows when that'll be.have been watching what i eat the past 2 days. i'm going to purchase gluten free food and see how i feel. i realize i even have to ck out the labels on some of my favorite spices which i now can't have boohoo. i was lactose intolerant when i was born and had to have my formula specially made. i'm not a big dairy person but do like cheese and yogurt and haven't really been watching what i eat in that dept. so will have to cut back a bit on that i guess. i have learned a wealth of knowledge from this site and wished i'd knew of it before as i'm sure i wouldn't have gone thru what i've been going thru. thanks to all of the info that everyone has given it truly has helped me a lot in realizing what this disease is and can do to the body. by the way does this disease affect the eye site. i had lasik surgery on my eyes a few years back and have times where i have to where glasses( i use them for nite driving) to see the tv and other times i'm fine. take care beth.

[Guest nini]

Welcome to the club! I'm not familiar with Canada's health system so would it be a problem if you decided to not do the biopsy at all? You've already said you want to start the diet to start getting better, If your blood test shows you have it, then you do have it (I was dx'ed with blood test only) and you know that if you stop eating gluten now, before the biopsy, the biopsy will most likely be negative, so why do it? Just go ahead and start the diet and start feeling better and forego the biopsy altogether. My GI dr. told me with my blood tests being so highly positive, I did not need the biopsy to confirm what he already knew.

Anyway, there are a lot of helpful people on here that can help you with recipes and food selections, my advice (not only to keep costs down but to keep your diet healthy) is to stick with a diet of foods that are naturally gluten-free. If you want to add in the occassional specialty foods that's your choice, but you can eat very well on foods that are naturally without gluten. Fresh fruits and veggies, clean meats (not premarinated or preseasoned or injected with anything) you can season them yourself, dairy if you can tolerate it (many of us are lactose intolerant at least until our villi begin to heal), grains like rice, millet, quinoa, alternative flours like tapioca, coconut, buckwheat, amaranth and on and on... nuts and seeds (if you aren't allergic), fish, and so on and so forth. You can buy most canned fruits and vegetables that are packed in water (as long as they don't have any added gluten) I buy a lot of frozen fruits and veggies so they don't go bad on me ... the best investment I made after my dx was my drop in freezer.

you can use all the fresh herbs and spices that your little heart desires to flavor foods, olive oil, safflower oil and canola oil are all great to cook with, and as far as baking is concerned there are a lot of great recipes for baking with alternative flours or there are some great mixes out there that you can buy. If you want pasta, most of us recommend Tinkyada, although I recently brought home some Orgran pasta and some Bionaturae gluten-free pasta to try (the buyer at our local Health food store recently went to a convention and says these products are way better than Tinkyada) ...

so that's my advice. don't go out and spend a lot of money on substitute gluten-free products like cookies and things, give yourself some time to heal and then start to add in a few gluten-free specialty products at a time... (if you go out now and buy every gluten-free specialty item you find you will probably end up throwing half or more in the trash!)

[mouse]

Welcome to the forum. We have several active Canadian members on here. Somewhere there is a thought that I read on here, that if you get a positive diagnosis of Celiac that it helps with treatment, taxes, something. I just can't remember. Before you go gluten free, why don't you start a thread that has a question about whether the biopsy is necessary in Canada. I don't want to give you the wrong info and I really don't remember what I had read. Good luck to you and when you do start the diet, watch your health improve in ways you did not imagine.

[maribeth]

nini thanks for your info. thru this group i have been able to do a lot of research thru the different websites that have been given. it's a lot to learn. i went out and bot just the basics to start some baking and some pasta which i love. it can be very expensive i can see. i'm not a big sweet eater but do love chips and nuts and popcorn which most of this stuff i seem to be able to eat.woooooohooooooooooo. again thanks for your help.beth

Welcome to the club! I'm not familiar with Canada's health system so would it be a problem if you decided to not do the biopsy at all? You've already said you want to start the diet to start getting better, If your blood test shows you have it, then you do have it (I was dx'ed with blood test only) and you know that if you stop eating gluten now, before the biopsy, the biopsy will most likely be negative, so why do it? Just go ahead and start the diet and start feeling better and forego the biopsy altogether. My GI dr. told me with my blood tests being so highly positive, I did not need the biopsy to confirm what he already knew.

Anyway, there are a lot of helpful people on here that can help you with recipes and food selections, my advice (not only to keep costs down but to keep your diet healthy) is to stick with a diet of foods that are naturally gluten-free. If you want to add in the occassional specialty foods that's your choice, but you can eat very well on foods that are naturally without gluten. Fresh fruits and veggies, clean meats (not premarinated or preseasoned or injected with anything) you can season them yourself, dairy if you can tolerate it (many of us are lactose intolerant at least until our villi begin to heal), grains like rice, millet, quinoa, alternative flours like tapioca, coconut, buckwheat, amaranth and on and on... nuts and seeds (if you aren't allergic), fish, and so on and so forth. You can buy most canned fruits and vegetables that are packed in water (as long as they don't have any added gluten) I buy a lot of frozen fruits and veggies so they don't go bad on me ... the best investment I made after my dx was my drop in freezer.

you can use all the fresh herbs and spices that your little heart desires to flavor foods, olive oil, safflower oil and canola oil are all great to cook with, and as far as baking is concerned there are a lot of great recipes for baking with alternative flours or there are some great mixes out there that you can buy. If you want pasta, most of us recommend Tinkyada, although I recently brought home some Orgran pasta and some Bionaturae gluten-free pasta to try (the buyer at our local Health food store recently went to a convention and says these products are way better than Tinkyada) ...

so that's my advice. don't go out and spend a lot of money on substitute gluten-free products like cookies and things, give yourself some time to heal and then start to add in a few gluten-free specialty products at a time... (if you go out now and buy every gluten-free specialty item you find you will probably end up throwing half or more in the trash!)

mouse thanks for your info. good idea about starting a thread re the biopsy in canada. will ck into the tax thing. take care beth.

quote name='mouse' date='Oct 21 2006, 11:16 AM' post='222650']

Welcome to the forum. We have several active Canadian members on here. Somewhere there is a thought that I read on here, that if you get a positive diagnosis of Celiac that it helps with treatment, taxes, something. I just can't remember. Before you go gluten free, why don't you start a thread that has a question about whether the biopsy is necessary in Canada. I don't want to give you the wrong info and I really don't remember what I had read. Good luck to you and when you do start the diet, watch your health improve in ways you did not imagine.

[happygirl]

Welcome to the board!

I highly recommend a book by a leading Celiac researcher and physician. Dr Peter Green, "Celiac Disease: A hidden epidemic" It is a good reference and is up to date. I wish I had it when I was first diagnosed!

Although the biopsy is the "gold standard" for diagnosing Celiac, it is not always necessary. Just remember that the biopsy can only rule "in" Celiac, it can not rule it "out." (Because the intestine is so large and damage can be patchy). You do not need a dr's permission to go on the gluten free diet.

This being said---would it make it easier to navigate the frustrating medical field if you have an 100% official diagnosis? Yes. I think we would all like to have the gold standard because it would prevent a lot of frustration later. BUT---the biopsy will not be accurate if you start the gluten free diet. (I was misinformed by my doctor, who TOLD me to start the gluten free diet. I was on it for over a month before my biopsy. What was the point? He didn't find any damage but agreed based on the bloodwork and my positive dietary response that I had celiac). Also-if you have the biopsy, ENSURE your doctor takes multiple biopsies from multiple sites. (Hence, why I recommend Dr. Green's book. It covers all this, and if you have a reference from a respected MD, it will help you navigate the system. Hence, why I wish I knew all this stuff at first!)

Good luck. Let us know what we can do to help.

[Guest nini]

Although the biopsy is the "gold standard" for diagnosing Celiac, it is always necessary. Just remember that the biopsy can only rule "in" Celiac, it can not rule it "out." (Because the intestine is so large and damage can be patchy). You do not need a dr's permission to go on the gluten free diet.

didn't you mean it ISN'T always necessary?

[happygirl]

lol. yes. I am going to go back in and edit it. You can thank the brain fog for that one.

[Gamecreature]

My GI felt that the blood work and my reaction to the gluten-free diet were sufficient for his diagnosis. Fine by me.

[All-about-March]

Hello Beth and welcome!

I came across your post and thought I could provide you with the link to the Canadian site for tax concessions. This will be my first year claiming my food as a medical expense. As far as I can tell, as long as you have a medical certificate from a medical professional stating your diagnosis and need for special diet, you should be eligible - I couldn't find anywhere that it has to be from a GI specialist. So, if your doctor is willing to provide that, I am assuming you are good to go. I would still investigate it first though.

I was sent by my GP to a hematologist for many different deficiency issues, she in turn found positive anti-endomysial, but referred me to GI for confirmation by biopsy. I was clueless and just went with the flow of things. I guess I was lucky that the communication between each doctor was effective b/c the whole process was pretty rapid. It sounds as though your process is a tad more frustrating. As for having the endoscopy done, I cannot really give any sound advice b/c I was just booked in for it, without any real discussion about positive bloodwork being enough for diagnosis. Being ignorant about Celiac, I just took what the doctors gave me. The procedure itself was not too bad and my GI had me in for colonoscopy at the same time. Having the endoscopy and biopsies done can be a personal choice for you. If you are content with the + bloodwork, then start your gluten free diet and hopefully you start to feel better very soon!

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Good luck!

[maribeth]

Hi Beth(nice name lol) thanks for the welcome and the tax info. will look into it more as i have a friend that works for the gov't in the tax dept. Will ck in with my dr too. i just changed to a new dr this year as my other dr moved. i've had problems for a long time but this is the first dr that has acctually sent me for these kinds of test perhaps cause she is celiac and recognized the symptoms. it is frustrating to know you have the disease and want to start healing yourself but know you shouldn't really until the biopsy is done. it's been since the end of aug and i'm still waiting to get in for the tests(having a colonoscopy at the same time) i've been after my dr to follow thru and she says it's being done and the specialist just has a machine and noone to talk to. i don't know if it's my dr not following thru or the spec is so busy they haven't got around to booking me in. i'm going to call my dr again on mon. i'm just watching more or less what i eat and am feeling better but know i would feel better on the gluten-free diet. i will go for the biopsy just for my peace of mind. this way he'll be able to determine if there is damage and how much. thanks again for the tax info. take care beth.

[flagbabyds]

I would reccomend staying on gluten until you talk to your doctor because if he wants you to get a biopsy then you do not want to go back on gluten knowing how much better you feel on the gluten-free diet.

Welcome to the board I know you will find great resources and everything and everyone here is very ahppy to answer any questions you have and there is no question stupid enough for us, we have all been there and now we are here to help

[maribeth]

I'm just watching what i eat right now. to be honest i'm not a big gluten eater at least i don't think i am. i have oatmeal in the morn and sometimes a sandwhich at lunch and once a week pasta but other that i don't eat a lot of noticeable gluten food. i love rice so have that 2-3 times a week. i'm not a big sweet eater either. there must be a lot of hidden gluten that i must eat. Beth

quote name='flagbabyds' date='Oct 22 2006, 01:50 PM' post='223051']

I would reccomend staying on gluten until you talk to your doctor because if he wants you to get a biopsy then you do not want to go back on gluten knowing how much better you feel on the gluten-free diet.

Welcome to the board I know you will find great resources and everything and everyone here is very ahppy to answer any questions you have and there is no question stupid enough for us, we have all been there and now we are here to help

[Creative-Soul]

I'm just watching what i eat right now. to be honest i'm not a big gluten eater at least i don't think i am. i have oatmeal in the morn and sometimes a sandwhich at lunch and once a week pasta but other that i don't eat a lot of noticeable gluten food. i love rice so have that 2-3 times a week. i'm not a big sweet eater either. there must be a lot of hidden gluten that i must eat. Beth

Welcome to the board!!! You will be amazed at how much gluten is lurking out there in things that we would never have suspected at first! I hope that you have taken a look the lists of forbidden/allowed foods on this site (check the site index)...boy did it open my eyes!

As for my personal experience with testing, etc, I didn't get any "official" tests. I stumbled across the gluten-free diet after I got ridiculously sick about a year ago; my system basically crashed and I instinctively went on a light, cleansing diet. After a month or so I started trying to rotate foods back in, but my body would revolt against me when anything with wheat or gluten was ingested, so I just stopped eating whatever made me sick. After a few months I became more aware of Gluten Intolerance/ Celiac, and thought about being tested, but I have no insurance and can't afford to go to the doctor very often! Also I would have to resume eating gluten again .. I started that with the intention of maybe trying to get at least the blood test done. However, after the first day of my gluten challenge I couldn't do it - I just wanted to DIE!!! I thought I was going to die... I ended up in my Doc's office in tears, and we had a looonggg talk about my symptoms, the pros and cons of testing re. cost knowing my (student!) financial situation & especially the violent reactions I was getting...he decided not to put me through all that, and I quite frankly agreed... I just never wanted to feel that way ever again...

I wish you all the best... this is a great place to come for information and support!