Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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.

To Test Or Not To Test
0

6 posts in this topic

Hello, all! This is a long one, but there IS a question at the end, so feel free to skip to that.

 

It all started with an article in Prevention magazine that my mother left on my coffee table. “Could it be gluten?” it asked. “Check off any of these common signs of gluten sensitivity that you experience.” Frequent constipation or diarrhea? Check, both, alternating. Abdominal pain or stomach cramps? Yep. Headaches? Every day of my life. Fatigued even after getting enough sleep; difficulty keeping mental focus; skin rashes; waking up with stiff joints; depression? Always, yes, sometimes, yup, and check.

 

So I decided, okay, I’ll eliminate gluten for the month of June and see if I feel better. Then came the inevitable Internet Research. I try not to get sucked into the catastrophizing that usually happens when people search for medical symptoms and diagnosis on Google. Instead, I tried to focus on what would help me to learn more about gluten and prepare for this month-long experiment. Initially I had thought maybe I have a bit of a gluten sensitivity, but it’s not nearly bad enough to be celiac disease, right? Because I had this impression that celiac disease, for everyone who has it, is excruciating stomach pain and crying in the bathroom because it hurts so badly. I feel like crap all the time, but I manage.

 

But the more articles and blogs I read about symptoms and testing and how amazing people felt after eliminating gluten, the more I got sucked in, and I learned that not everyone with celiac has those super-severe symptoms. As I read personal stories and lists of symptoms, I thought to myself, “This could be me. This could be why I’ve been sick in so many ways for nearly my entire life.”

 

Last fall, I participated in a “cleanse” for three weeks, during which I eliminated dairy, wheat, meat (only for the first week), caffeine, etc. and was basically just eating fruits, veggies, rice, and lentils. If I had been smart, I would have finished it properly by gradually reintroducing the different types of foods and observing my body’s reactions. Those three weeks were probably the healthiest I’ve felt in my life, but I didn’t realize it until afterwards when all my symptoms reappeared, and I wasn’t able to pinpoint the exact cause.

 

I’ve been wavering between just eliminating gluten on my own or actually going to the doctor to be tested for celiac. I don’t have a PCP, and I’m not really one for going to doctors because I haven’t had the greatest experiences with them in the past several years—plus it’s so expensive, even with insurance. Yesterday, I called and was put on a waiting list to see the doctor who seems to be my area’s medical expert regarding celiac; he’s booked through June.

 

I’m not sure why, but part of me feels like that official diagnosis is important to have. Maybe for some kind of validation or something? At the same time, why not just cut out gluten, see if I feel better, and be happy with that, without wasting money on tests and office visits? But then what if I decide, later on, that I SHOULD get tested, and I have to go back on gluten and be miserable all over again?

 

So tell me: what are the benefits of going to the doctor, getting tested, receiving an official diagnosis? Are there any?

 

I saw another thread that was kind of asking a similar question, and I found some good insight there. I was hoping to get some more opinions. Do you think that a diagnosis might make it more "real"? Or make you take it more seriously?

 

I'm glad I found this forum. It's been very helpful as I've tried to become more aware of everything surrounding gluten. :-)

Edited by axm9237
0

Share this post


Link to post
Share on other sites


Ads by Google:

I don't have answers for you, but am also asking the question of whether to get tested.  I was tired of going to bed with a trash can every night because I felt so nauseous. I thought I just had a sensitivity, too, so I cut back on my gluten intake. I would "cheat" on the weekend in case I felt sick. My nausea went away almost immediately and my little bit of gluten on the weekend is making me feel worse.  I've got an appointment scheduled for June but can't imagine going back on a gluten diet for several months. I also am disappointed to hear many people share their bad experiences with the doctors.  I'm afraid that a doctor's visit may only make things worse. Wish it was easier to diagnose.

0

Share this post


Link to post
Share on other sites

My husband's been gluten-free for over 12 years.  No tests.  Just trial and error and the advice to avoid gluten per two medical doctors.  He's been happy and it was easy for us to comply since I had food allergies/intolerances.  I was recently diagnosed with Celiac's and was tested because: 1) avoidance of potential health issues for my daughter and rest of extended family and 2) to get others to comply with the gluten-free diet.  There's nothing like a good old pathology report to convince family of friends that you do "really need to stay clear of gluten".  

0

Share this post


Link to post
Share on other sites

I have been gluten free for 13 years now, and I was self-diagnosed after doing a fast and then eating seitan (which is fake, vegetarian chicken) and is made from 98% gluten. I had the most intense, undeniable reaction within 15 minutes of eating! I've been gluten free ever since. This year, I decided to get tested b/c my husband is kind of a pain about my lack of a true diagnosis, but I was unwilling to be back on a gluten diet for long enough. I had cheated a few times, and figured that I would get tested. It came back negative, and I was unwilling to even think about eating gluten again, so I guess it was a total waste of time and money. My son is now showing signs of gluten sensitivity and has been eating gluten every day. I am having him tested tomorrow, and honestly, b/c of my husband's attitude, I am hoping it comes back positive. If it does not, I still think he would be better off not eating gluten, as he is showing the very allergic and always stuffy signs that I lived with my whole life until I quit eating it. So, do I (and my son) just have a sensitivity and not true Celiac Disease? I don't know. For myself, I consider myself to be allergic. For my son, I would like a diagnosis so that my husband can know for sure. The knowledge that gluten was causing my health problems was undeniable for me, and I never needed that diagnosis. When you're dealing with a 4 year old, it's a bit harder to figure out. Good luck with your decision. I say just quit eating it, and start living a healthier, more energetic life!

0

Share this post


Link to post
Share on other sites

I'm in the middle of a similar process, and I think this is a very individual decision, but here is why I decided to get tested:

 

1) I have a daughter who is almost four, and she is experiencing almost exactly the same symptoms I had as a child. Like so many others, I've had a whole host of really unpleasant and persistent but never-super-serious symptoms over the years, and so many doctors have downplayed the constant nausea, diarrhea, and rashes that it ended up making me resent doctors and feel reluctant to seek medical attention even when I clearly needed it (e.g., when I had a 103.5 fever that wouldn't go down). I don't ever want my daughter to go through that. If it turns out that I have celiac, they will have to agree to test her.

 

2) A whole lot of people in my extended family have similar symptoms, especially bizarre but not-medically-serious neurological symptoms that remain unexplained. The digestive problems have always been attributed to extreme lactose intolerance or reflux, and the neurological symptoms have always been attributed to some sort of vague family tendency toward "nervousness". If I find out that I have celiac, it could help a whole lot of others find the cause of their medical problems.

 

3) I want to know whether eating a tiny bit of gluten once in a while would actually be damaging my body, or just making me feel awful. I'll never go back to eating it regularly either way, but if I don't have celiac I might eat a little bread when traveling, or when I'm really hungry and there are no gluten-free options. If I have celiac, I'll never do that. 

 

I also had an extremely strong negative reaction to reintroducing gluten, and I'd only been gluten-free for less than two weeks! I've never liked bread or pasta and always knew I didn't feel great when eating it, but until I did a clear test I'd always downplayed how horrible it actually made me feel. Now it is crystal clear, regardless of how the tests turn out. But I do feel like I need to know for sure, so that I can make informed decisions for the rest of my life. 

 

Good luck with whatever you decide to do!

0

Share this post


Link to post
Share on other sites




Sorry for the late response. I've been having internet trouble. I just wanted to thank you all for your insight. It was very helpful!

In weighing the pros and cons of testing, I've decided to just eliminate gluten on my own for now, and if I need to get tested later on, I'll deal with it then. Unfortunately it was the cost of testing that ultimately made the choice for me. There's just no possible way at this time that I could afford it.

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
      103,588
    • Total Posts
      918,280
  • Topics

  • Posts

    • Rectal bleeding and abdominal pain
      I had a lot of bad abdominal pain for at least 6 months.  A few of the ER nurses told me to watch soy.  I think they were on the right track because I ended up having a few other food intolerances besides gluten causing the pain.  Food intolerances are tough to figure out.  Could be anything, but there aren't tests to figure it out if it is a food intolerance aside from eliminating it for a while. That being said, it sounds like you are on the right track going to a GI doctor.
      I wonder if they checked your gallbladder? I'm assuming they would have done appendix with it being in that location.
    • Nothing left to eat
      Buckwheat cereal is what I go to a lot.  Oats may or may not be ok with you.  If you go to a gluten free store there are lots of gluten free cereal options.  Instead of cow's milk there is almond milk, coconut milk, rice milk, hemp milk, soy milk.
    • Endoscopy in 9 days after being low-gluten for a year. What to eat?
      I agree Katie, the gluten challenge isn't worthwhile for some people.  Regardless of your test results, I think you know the answer is not to eat gluten anymore.  I hope you recover quickly from the damage.
    • Last posted 2013 - Improving health
      I am glad you are feeling so much better!  Your posting will encourage others.  Thank you!
    • Last posted 2013 - Improving health
      When I first started this journey, roughly 11 yrs ago with symptoms, I had no clue. Eventually, having no luck with doctors (hypochondriac or psychosomatic), I googled my symptoms over and over looking for something... ANYTHING... that would give me a clue. Among other issues, my insides would not move, I was turning gray, felt like death, and had a persistent cough. I can't remember who but someone had posted on the forum and I found some of my symptoms. Eureka, I immediately began a gluten-free diet to see if it made any difference. Of course that was a journey, not realizing what products contained gluten. Long story shorter – first I went gluten-free, symptoms began to reappear, then it was soy (first organic was okay, then not), symptoms reappeared, took out corn, symptoms reappeared, then it was all grains. So the last couple of years I have been grain-free plus no sulphates. Actually, truth be told, my Celiac pharmacist gave me the recipe for health. I asked her if she liked a certain product. She answered, “I don't know, I have never tried it.” I asked her what she did use. She replied, “Nothing out of a box, a bag, or a bottle.” And that has pretty much been my life for the last couple of years. There is the odd product I try but it always has an after effect and I have to way the consequences against the enjoyment of it. I am one of those who react to 1 crumb in the butter, flour dust in the air, sulphates in anything, sometimes things that don't even seem like they would be a problem, like avocados and blueberries when I am contaminated. January 2016 I began this recitation. It is now May 5th, 2016 - Here I am 4 months later and I feel like screaming to anyone who will listen, “Things are improving!! My gut is healing!!” So what happened?? Someone suggested digestive enzymes. My insides were so compromised that I couldn't eat much besides fruit, veggies, and meat; all plain, all without being touched by people other than me. I could barely stand salt at times when I was compromised. Haven't been to a restaurant in years since I am not in a city that would have one to cater or understand this much of a problem. I started digestive enzymes but I read the label wrong and started with 5 first thing in the morning. Whatever... I began to notice improvements in what I could eat. Not anything different but just that I could eat without feeling ill or having my gut shut down. I stayed on those for a month and a half.. then I picked up a parasite from someone living in a very unclean apartment and visiting there and helping to clean. Well, that was a huge battle. I had to eat to discourage parasites. But in the process my insides began to heal dramatically. I was eating blackberries, drinking garlic keefir (which I couldn't have done 5 mths ago and gave me the first clue my insides had improved substantially), drinking oil of oregano or peppermint oil drops in a glasses of water, eating cabbage and green roughage. Drinking water with apple cider vinegar in it and Aloe Vera juice. After a couple of weeks my insides were a whole different story. I had a feeling of wellness that I hadn't had for years! I FELT like trying to eat something different. So I decided to try Gluten-free Rice Chex. Haven't had them in years.... and I am so happy! I can eat them!! (Not to say they are healthy, cause they are processed crap) but I didn't get sick and that was the amazing part. So now I am beginning to try a few things that would have set me back previously, I have made my own crème brulee because I have always been able to eat eggs. But the sugar was causing problems, but now it's okay. The issue I have now is that I want to try things too fast so I am having to exercise restraint. So here is it – parasites are very common, everyone has them however whether they cause problems depends on your immune system. Does it not makes sense that they would cause leaky gut? An over abundance in the gut would destroy gut tissue and take nutrients from a person and possibly put holes in the gut leading to food reactions? Digestive enzymes help to destroy the protective coating around parasites. Foods that discourage them or kill them are blackberries, garlic, cabbage, oil of oregano, peppermint oil, aloe vera juice, Braggs apple cider vinegar and more (google to find). I found medication didn't do anything so I turned to all the other. So this is how it is today. I don't suggest it is the answer to anyone else's problems but when I found this site, hidden in the posts was the beginning of the answers for me.  I may still be gluten, soy, corn intolerant but I am feeling so good now and I just thought I would tell someone.  I just wanted to share. Thanks for reading.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,686
    • Most Online
      1,763

    Newest Member
    rotokim
    Joined