• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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.

Thank You For This Site
0

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!!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,460
    • Total Posts
      930,678
  • Member Statistics

    • Total Members
      63,884
    • Most Online
      3,093

    Newest Member
    Mato Sapa
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol Cheers Sorry, best of luck! Matt  
    • Similarly, I've been vegetarian for 25+ years.  A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did.  I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.
    • LOL, that might put it into perspective if I explain it that way. 
    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
  • Upcoming Events