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

Need Help Or Answers?
0

4 posts in this topic

Hello, I have been reading through the boards with a lump in my throat on the verge of tears. it makes me happy to find so many people have found out what is wrong, and are improving, however I have had no such luck. In the past month three people have called me to diagnose me, and I have told them the same thing: I was tested years ago, and I don't have it!

But everything I read suggests i do. It has been seven years, after a road trip around the country, that I have been "ill". What started with "my stomach hurts" has turned into years of increasing agony, testing, and no relief. Years of prescribed meds have done nothing but turned me off to medication. My gallbladder has been removed, and i have been poked and prodded more times than i care to count. I have been told "IBS" and i REFUSE to accept that.

I started with small amounts of stomach discomfort, bloating, pains. Those pains became more frequent and turned into all-out episodes of excruciating pain almost daily. Then the diarrhea started. Every day for years now, I have been in the bathroom more than 5 times a day. Then started the food restrictions, some at the doctors orders (following diagnosis after diagnosis) and the medications. I took more and more pills, ate less and less, and went to the bathroom more and more. Then the first panic attack hit. It has been downhill ever since. For two years I have been

0

Share this post


Link to post
Share on other sites


Ads by Google:

Assuming your doctor did the right tests, which is a HUGE assumption, you may still have a false negative. And that's EVEN if he/she was being generous reading the results. (For instance, four out of my five tests came back "negative" - the lab doesn't have a quantitative number. Only my antireticulin IgG (I think) came back positive. Not exactly a classic diagnosis, and most docs would have said "Oh, you're not celiac." But my doc labeled the results "inconclusive", and I tried a gluten-free diet, and even though I'm close to asymptomatic, I still noticed a difference.)

Honestly, the easiest thing to do is to just try the gluten-free diet. If you keep things simple, it's really not as hard as it sounds. Particularly if you focus on eating whole foods that are obviously gluten free, like rice, vegetables, beans, fruit, meat, etc. You may find that - with a bit of help and advice - "trying" a gluten-free diet isn't hard. It's likely - at this point - going to be easier than getting a doctor to help you figure out what the problem is! It could mean a month or two of bland, boring food. But that may lead you to your final answer.

0

Share this post


Link to post
Share on other sites

Mindy,

You sound like me, only more so! I'm 27 years old, too, and I feel like my body has been slowly betraying me ever since I was born. Doctors have never been able to figure me out. I didn't have digestive symptoms until recently, though, so I fortunately haven't had to deal with the "cop-out" diagnosis of IBS.

Let me reassure you of one thing: NONE of this is in your head! It is all real, and it most emphatically DOES sound like celiac disease. It is definitely possible for blood tests to come back negative and be wrong--and the same is true of a biopsy. Tests for thyroid function are also of questionable value, since they say nothing about what is normal for YOU--just the mythical "average" individual. Allergy tests will not detect celiac disease, because allergies and celiac disease are mediated by different elements of the immune system.

I am sure you will want to have a look at Enterolab.com. They offer a panel of tests for celiac disease that are reportedly MORE sensitive than blood work or even a biopsy, and the price ($100-$400) is reasonable when you stop to think about it. I believe these tests are fairly new, which explains why they are not used by mainstream doctors yet--most doctors continue to operate on research that is ten to fifteen years out of date! As soon as I can afford it, I will be having myself and my children tested (and my husband as well, if I can convince him to play along), even though my intuition tells me I have found the problem and we are all doing much better on a gluten-free diet.

If you get to the point where you are ready to try going gluten-free, a nutritionist or dietitian FAMILIAR WITH celiac disease would be invaluable to you. Remember, too, that we are all here to help you through the adjustment process--just let us know how we can help!

I have noticed that celiac disease has been getting a fair bit of press time recently, which is wonderful! Now, perhaps, doctors will catch on that this "rare" disease isn't so uncommon after all, and people won't have to suffer needlessly for 27 years--or longer--before getting an accurate diagnosis! Good luck to you!

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
      104,354
    • Total Posts
      920,517
  • Topics

  • Posts

    • Hi Aly and welcome You may want to repost this in a new thread, that way more people will see it and can advise you.  I think you would be much better off getting the celiac test now, if you stay off gluten you will need to go back on it and that can be much harder. That said, loads of your symptoms look like they could be gluten related.  I had a persistent 'trapped nerve' for instance under my eye which would twitch like crazy. Since I went gluten-free doesn't happen any more.  Best of luck! Matt
    • Your scalp sounds like seborrheic dermatitis. I have that and although its better after going gluten-free its very persistent. The dermatologist recommended Nizoral shampoo for it and it does help. I think dairy has a big part to play with skin problems, for me at least. 
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
    • Just found this site today. Did you ever find one? I was diagnosed this year and I live on Oahu.
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,424
    • Most Online
      1,763

    Newest Member
    drennanw
    Joined