• 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

My Celiac Story
0

9 posts in this topic

I hope this is the right forum to post this in, but I thought I would join and I'd like to share my Celiac story..

Celiac, or not Celiac. that is my question. and it is a question that will never be clearly answered. It IS depressing to know the only proof I have of having celiac disease is my own physical diagnosis...simply a trial of seeing what symptoms I suffer from actually match up to those of celiac disease..

I never will forget the day I became ill, or at least noticably ill. I remember about 4 years ago going back to school after lunch with a stomach ache frequently, always just assuming I had either ate too much or too quickly..

Last New Years day I had half a styrofoam glass of Clamato juice because I was thirsty and everything else was put away on the way home. I know that being allergic to tomatoes always caused me to have cramps that would go away in a day. But this time they didnt..

After 5 days of sever pain I went to the doctor. Between the day I got ill and mid February 2003(When I started the diet) I went through countless bloodtests, an ultrasound, and a barium xray. Everything came back negative. I was in the doctors office at least twice a month last year, so by the end of the year they quit asking me who was calling. Because SK has the longest waiting lists, I never had my Endoscopy til March 9th and my Colonoscopy May 26th...2004 <_< ...Because of the length of time on the gluten-free diet both came back negative. My family doctor suggested this July, when I received my colonoscopy results, to join the main association. And also said the only way to actually prove having celiac disease is to go off the diet for at least a year and retake the tests...I refuse..

Unless you are in my situation, I believe it is impossible to know what I'm going through...

~Being 20 years old

~Losing 20 lbs in the first month of being sick

~Starving or suffering at all family gatherings because of VERY little support..I've actually begun to skip out on events(only to be yelled at) or taking my own food(only to be glared at)

~Suffering from the majority of symptoms even when sticking to diet

~The extreme difficulty of going out with friends

~Spending an average $100 a month just to feed myself, when I'd rather be saving up the money so I could go to Uni.

~Nobody understanding what celiac disease is even after I explain

~Going from a size 12 waist to the size 5 I am at now, and being annoying at MANY people telling me how pale and tiny I am. And trust me, for a 5' 6 1/2" tall person, size 5 IS tiny.

So now you know my Celiac story. I am sure I am not the only one going through something like this, but I can tell you this is not how I ever imagined spending my life at my age...

~lisa~

0

Share this post


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


:( i feel for you lisa and it does sound like celiacs--i was never dr. diagnosed either, i was always told it was IBS and eventually decided it was in my head, that i must be crazy or something--if you have been gluten free for this long and still feeling ill, then i think you are getting gluten somewhere that you have discovered yet or maybe there is another allergy showing its ugly head too--many celiacs have more then one allergen, many have many--keep your chin up--deb :rolleyes:
0

Share this post


Link to post
Share on other sites

I'm sorry to hear you're getting no support from your family. I've never understood this, but I've always gotten nearly complete support.

If you're absolutely sure you've eliminated all sources of gluten and you're still having symptoms, then something else is going on as well. Two things that come to mind are other food intolerances (dairy, corn) or the possibility of bacterial overgrowth. You can usually take care of the second simply by taking probiotics.

Finally, if you have the facilities to cook for yourself this way of eating does not have to be expensive. I spend less now because I don't eat out as much. But I also don't buy those expensive gluten-free specialty foods. I bascially cook with raw meats and fresh fruits and vegetables (not that I don't use any canned or processed goods -- I do).

richard

0

Share this post


Link to post
Share on other sites

I think you'll find a lot of people who are in or have gone through the same exact situation you are now in.

Sorry to hear that your life isn't the way you want it. I know I didn't expect to be 19 and so different form those around me. But after 2 years I have found that I can do a lot of things that my peers do when I am not sick. It took me awhile to fully be symptom free but once youre there everything is so much better.

I get very depressed over my Celiacs often and it is such a pain and the copst and everything you listed. In the end I know that this life is better than a life filled with wheat and I better try to find the postive. The food is way too expensive but some of it does taste good. Ha.

Anyways, I hope this forum offers you a lot of help AND support!

Kristina

0

Share this post


Link to post
Share on other sites

Thanks guys, I have a feeling there will be a lot more support here than I will find out there in person.

And what I meant by still having all the symptoms even when I stick to the diet, I meant that I dont feel the pain from eating gluten, but I suffer from pretty much everything else. Its a real pain and I know I get really depressed too sometimes..

At least I have all of you :)

~lisa~

0

Share this post


Link to post
Share on other sites
Ads by Google:


Hi Lisa,

Welcome to the forum and you will receive much support from us, as I have since I have joined.... It is incredibly reassuring just having someone who can empathize with your situation, especially considering the fact that you are lacking the support of your family, which never ceases to amaze me.....

Many of us are still suffering symptoms of Celiac even though a gluten free diet is being followed. That's what is so helpful, not only having other people in your situation so you don't feel so alone, but also, there are "gluten sleuthers" here who can help you pick out hidden sources of gluten (which there always are).

Have a great day!

Karen

0

Share this post


Link to post
Share on other sites

Oh, and I forgot to mention,

I am the Number One Leafs Fan!!!!! Go Leafs Go!! (That is when they get around to playing again!!!!)

Karen

0

Share this post


Link to post
Share on other sites




"I am the Number One Leafs Fan!!!!! Go Leafs Go!! (That is when they get around to playing again!!!!)"

IF they get around to playing again. There's some speculation that this strike could kill off the NHL.

richard

0

Share this post


Link to post
Share on other sites

Hi I am 20 too and I know how you feel. I totally know. I went to school in NYC and had to come back, I spent $1000 USD on food alone in one month. Oh man if you wanna talk, I have a similar experience with the medicined aspect. I am extremely reactive to gluten and can't get a diagnosis (loove canada) and therefore can't get better. My parents friend is a doctor and he says it might be in the middle of the small bowel and only the camera pill can find the damage. Mybe that is why i have constipation and not diarrhea.

0

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
      107,341
    • Total Posts
      935,593
  • Member Statistics

    • Total Members
      65,008
    • Most Online
      3,093

    Newest Member
    rachel carmichael
    Joined
  • Popular Now

  • Topics

  • Posts

    • You're welcome ritamichelle. Yes, if you are biopsy confirmed then it will be much easier to get your daughter tested. 
    • I agree that In people that have celiac there usually is a trigger. It can be physical or emotional stress as the article states. I wonder though if the people they say 'don't have the genes' are folks that simply have rarer ones. There is research on more genes. I discovered it when I was writing a paper for a class. It was a very long time ago in 'computer age' and my bookmarks died along with the computer I was useing. But it is out there on peer reviewed sites like Lancet, NIH etc. Since celiac was rarely tested for even a couple decades ago there are many folks that may have celiac in their family but it was never known. That was the case in my family. I am confident about that.  I always wondered why my Mom seldom left the house, spent a lot of time in the bathroom, was tired all the time and was always holding her hands the way she did.  Then I became her.  We have so much to learn about celiac. Personally I dislike the term 'NCGS' because it makes folks think at times they don't need to be as strict and it isn't as serious. Too many are told that their biopsies are negative and they then get the NCGS label if they had positive bloods.  I consider celiac to be a spectrum disorder. Not all celiacs have gut impact or at least haven't developed it yet. I had the neuro impact and DH from shortly after I was impaled as a young child. It was many years before any severe GI issues arose.  
    •     http://www.takepart.com/article/2014/08/11/coffee-adulterated https://www.thetimes.co.uk/article/how-was-your-morning-coffee-did-it-taste-like-mud-v6rfdmrrr92 http://grist.org/food/coffee-taste-like-dirt-thats-because-it-might-be/ " Using liquid chromatography, which identifies the individual chemical components of a mixture, the Brazilian scientists found wheat, soy bean, brown sugar, barley, corn, and rice commonly interspersed with the grounded coffee they tested. Large amounts of wood and dirt were also prevalent, an issue not only for purists who prefer to drink their coffee black, but for those with potential allergies to the unknown additives. As TIME reports, the scientists are identifying the rogue coffee with increasing accuracy:" http://www.bodyandsoul.com.au/health/health-news/is-there-wheat-hidden-in-your-coffee/news-story/a3d53a7c36b76156f08d89eab6a396b3   -----   I have also read other references to coffee upsetting those with celiac.   Personally I have a family history of officially diagnosed celiac even though I have never been diagnosed myself..then again Ive never been properly tested. My drs just keep saying the following symptoms are anxiety and wont refer me to a gastroenterologist for:   Loss of bowel control, pale coloured stools, severe bloating, passing undigested food, ataxia, vertigo, migraine headaches, feeling feverish, repeated ulcers on my tongue and in my mouth, feeling generally ill and sleep issues (mostly falling asleep when I dont want to but rarely insomnia).   Because they insist its anxiety as routine blood tests are normal they wont refer me to a gut dr. They did do a blood test for celiac once on my request but it came back negative. This does not phase me when it comes to my suspicians that gluten is an issue for me because:   1 I was on a gluten free diet at the time, hence why i was well enough to crawl to the gps office. 2 I have a family history of celiac 3 MY symptoms are alleviated by a gluten free, dairy free, oat free, corn free diet..and lately, coffee free it seems. Coffee has indeed become a problem for me recently. 4 I could not tolerate gluten based baby foods as an infant. I was admitted to hospital as a baby for being underweight because I was vomitting all my food up. They put me on gluten free formula and i was fine, stopped being sick and gained weight. I could have grown out of it but considering the symtpoms i get on a gluten based diet, i really doubt it.   -----   When it comes to the coffee, food manufacturers will do most anything to make profits if they think they can get away with it. We live in a world where money is most important and if they do get caught...they can always claim they have no idea how the barley got in there!    
    • If you have had a sleep study and been diagnosed, you have sleep apnea. It's definitely different than waking up to go to the bathroom. Are you using your cpap every night for The entire night. Naps too? SA can actually cause death so it's very Important for you to use it every time you sleep. Do you follow up with your doctor yearly? Sorry to sound like the SA police, but I know someone who died from it. He wasn't using his cpap anymore, thought it was uncomfortable.     What Is Sleep Apnea?   Sleep apnea (AP-ne-ah) is a common disorder in which you have one or more pauses in breathing or shallow breaths while you sleep. Breathing pauses can last from a few seconds to minutes. They may occur 30 times or more an hour. Typically, normal breathing then starts again, sometimes with a loud snort or choking sound. Sleep apnea usually is a chronic (ongoing) condition that disrupts your sleep. When your breathing pauses or becomes shallow, you’ll often move out of deep sleep and into light sleep.
    • Summer sausage, rope sausage or link sausage? what were the ingredients? Msg makes me dizzy.
  • Upcoming Events