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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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4 posts in this topic

Good afternoon! I have been a creeper on this site since June, and just had to join.  I'll hopefully keep this post shorter, but also introduce myself and give some of my background.

 

I am a stay at home mom with two children, run a small daycare in my home and also have a part time job as a bookkeeper.  I live in Canada, and have a mini zoo in my home.  As a child I always wanted to 'save' every animal I found, and now that Im the grown up I get too... and major bonus is my husband supports it :)

 

What brought me here?

I had my first born, and from the moment he was born both of us were going through medical issues. I knew the second he was placed on my chest that there was something wrong.  But it was chalked up to be being a young parent and hormonal. At the age of 5 months my son had already been in the hospital 3 times, and we found out that he was anaphylactic to dairy (I supplemented with formula). This is were my journey with learning everything there was to know about food began. My son has major food allergies, but as he has gotten older he has been reintroduced to many foods that he can now have.  At his worse, he had to be a vegan who was also allergic to a handful of fruits a couple of veggies and nuts.  It was a crazy time, and felt like the biggest elimination diet ever (this lasted for 18 mths) He is able to eat almost everything now, except he is anaphylactic to dairy (all derivatives), peanuts and tree nuts, and all types of seafood.  He's 9 yrs old now

 

Now about me, since I had my first born I started feeling ill all the time. I had to run to the bathroom, what felt like every time I ate. I started suffering from horrible migraines, and restless nights. I felt tired all the time.  I had gone to the doctor many times about my issues, brought it up at every physical.  I had gone for blood work, and everything came back normal.  After 4 yrs of my complaining they set me up an appt for a colonoscopy.  I couldnt make that appt due to the fact I found out I was pregnant with my second child.  I prayed that my issues would correct themselves with this pregnancy.  They did not.  They got worse.  I had to start seeing a neurologist for my migraines, as I was getting them in clusters.  My stomach issues got worse, so I was set for a full panel of allergy tests.  Everything came normal except a few things. I was in horrible pain all the time, and never had energy to do anything. I started having joint issue's, and got sent for xrays to see if I had arthritis. I also got sent to a dermatologist because I starting suffering from psoriasis. My goodness, I felt broken.  Then in the beginning of this year I had had enough!  I chose to do a total elimination diet for myself.  I started feeling better after a few months, my skin started clearing up and my migraines even got better.  After a doctors appt I had in May, I told her what I had been doing.  She sent me for more blood work (first time that she had check for gluten screen).  I got a call the next week from a GI doctor asking me to come in.  I met with him at the end of May, and give my medical history he was very surprised that I hadn't been referred to him years ago.  He told me to go back to eating what I was when I was ill, and that I'd have an endoscopy done. 

Boy oh boy, I did not realize what I was getting myself into.  My endoscopy was booked for Aug 29, so needless to say I had the worse summer ever.  I was so sick, all the time.  I had to go for more blood work 2 weeks before the test and it came back with low B12.  I had the biopsy done and he suggested right after the procedure I go on a gluten free diet asap. I was told that I would get a call once the test results came back.  (during the summer months I started really looking into things, and that is how I found this site)

I had my appt with the GI doctor two weeks ago and got the diagnose of celiac disease.  He said that he was pretty shocked to see the amount of bluntness to the villi considering I was gluten free for some time before we had even met.  So, I am gluten free 100%.  Ive changed hair and makeup products and have already started seeing a change in my skin. 

It's been a long road, and I'm sure it'll still be a bit longer as I'm gonna need time to heal.  Both my children have been requested to go for blood work to check them, and their B12 levels by their paediatrician. I'll be bringing them next week.  The doctor is a tad worried about my daughter, she's almost 4, as since she was 7 mths old she has had constipation issue's, and has already gone for a barium enema. My son has been screened before, but the doctor would like to do it again. Do to his medical history, and he is also anaemic.

So... ya... that was my "short" post on introducing myself.

Thank for reading!!

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Welcome to the board!  Sounds like quite a road you have traveled.  This has been a real helpful place for me and wrote my thank you earlier this month, actually.  Way to take control of your health!

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I am thankful for your definitive results.  I hope the same for your children

 

You have an incredible story and I hope one day you will produce a happy ending for it.

 

D

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Welcome,  I'm so glad you decided to share your story.  Like so many of us here, it has been a long hard road.  Now you, and  soon your family, can start some real healing and feel some control about your health.  I'm so happy for you :D

 

Colleen

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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