• 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

Recommended Posts

num1habsfan    1

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~

Share this post


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


darlindeb25    5
:( 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:

Share this post


Link to post
Share on other sites
lovegrov    148

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

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

Share this post


Link to post
Share on other sites
num1habsfan    1

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~

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

Share this post


Link to post
Share on other sites


Ads by Google:


lovegrov    148

"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

Share this post


Link to post
Share on other sites
Mballerina    1

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.

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
      107,887
    • Total Posts
      938,489
  • Member Statistics

    • Total Members
      65,793
    • Most Online
      3,093

    Newest Member
    GoForIt112
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hello, Often drugs that end in –artan are ARBs, and they work by blocking the angiotensin receptors. I’m not sure what the exact difference is between the two medications you mention, though. Have you called the manufacturer of losartan to see if any of the fillers contain gluten? It might be a good idea to know what those fillers are. In my drug book “dyspepsia” and “gastritis” are mentioned as side effects, but they did not drill down to the specificity of villous blunting. I did some googling, and in addition to what Knitty found, I came across this: Small Bowel Histopathologic Findings Suggestive of Celiac Disease in an Asymptomatic Patient Receiving Olmesartan “Although Rubio-Tapia et al are careful to avoid claiming a proven causal relationship between olmesartan therapy and the observed spruelike enteropathy, the data are highly suggestive of more than just a coincidental association. “They further suggest that a potential mechanism for the enteropathy could relate to inhibitory effects of angiotensin II receptor antagonists on transforming growth factor β action because transforming growth factor β is important in gut immune homeostasis. “Although anecdotal, these observations lead to the hypothesis that olmesartan, and perhaps other angiotensin II receptor antagonists, could be a cause of intraepithelial lymphocytosis in architecturally preserved proximal small intestinal mucosa.” (One of the patients in question was offered the opportunity to do a gluten-free diet, but he/she declined.) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3547582/ So, it looks like you are definitely on to something, and if this turns out to be a “thing,” would probably warrant dissemination on a wider scale. You didn't mention what your BP is with the medication or was without it, but please let your health care provider know if you do decide to discontinue your blood pressure medication. It's often recommended not to DQ suddenly, which can cause the BP to spike in some cases. Plumbago   ETA: Just because a drug can cause a particular side effect does not mean it does in your case. I just thought I'd add that, but nevertheless totally and completely understand the cause of concern in any case.  
    • Lol funny thing me and my dietician were talking about things that could also cause villi blunting years ago. He brought up a interesting one, he had a case where someone was taking massive amounts of Metamucil several times a day, He said it was like 2-4 tsp 3 times a day and making into hot gel drinks for weight loss to feel full. Anyway what this had done "scrubbed" his intestines so much with the abrasive fiber it had actually damaged the walls and blunted the villi.  He compared it roughly scrubbing with a loofah several times a day and it had like a fine sandpaper slowly eroded the insides of his intestines faster then it could heal.  He says because of that he would never suggest anyone to take the full dose of psyllium husk for longer then a week straight before rotating off of it.
        Not medical advice posterboy and this is a dangerous things to play with I know, but with your BP perhaps try to help regulate it with cinnamon oil, and watching and playing with your salt intakes of potassium and sodium. These tend to effect my blood flow and how I feel often. I am unsure if BP related, mine always checks great when I do check it. But Cinnamon is one thing I can not live without, I take several tbsp a day of it or a few drops of the EO. I have been doing this for over a decade, before that and when I do not, I start feeling cold, not wanting to move, and just want to curl up in blankets...no clue why if it is health, blood, neurological, or termogenic.
    • Is it the rectum or do you think it's more in your tailbone? As I get intermittent tailbone pain that is excruciating a couple times a month.
    • She may be one of those people who got diagnosed only via blood. Some tests can come back false positive. Or maybe only via biopsy and it turns out she had H. Pylori. Who knows. Absolutely could happen though.   One of the things that surprised me too was when my doc said it can weeks to months for symptoms to develop on a gluten challenge. I always had this image of getting so imminently sick that there was no question about the connection with gluten.   
    • Yea. I hope she isn't like one of my blood and biopsy diagnosed relatives who then had a gene test that showed she didn't have one of those 2 most common genes.  She was then told it was a misdiagnosis and went back to eating gluten. She is young so she could also be in what they call the 'Honeymoon' period that used to cause doctors to think celiac could be outgrown.  In young adults it can seem celiac has resolved because the person can consume gluten for a time before the antibodies start causing symptoms again. Pure conjecture on my part.
  • Upcoming Events