Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

Need Help Or Answers?

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


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.


Share this post

Link to post
Share on other sites


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 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!


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

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • It took me years to be diagnosed.  I've been misdiagnosed with several different things and knew that there was more to it.  I requested to have an egd to test for Celiac's two years ago, my doctor never called me back so I went low gluten from then on.  I still felt like hell because I didn't realize that "everything" has gluten in it....  My daughter became ill back in March.  I went to several different doctors trying to figure out what was causing her to be ill.  Our family doctor said she had gallstones, wanted to immediately do surgery on her.  I refused since she didn't fit the typical signs of a child with gallstones.  I requested a pediatric surgeon and then a pediatric gi dr.  The surgeon was smart enough to say maybe ask the gi dr to test for celiac disease....  Then it clicked.  I was so angry and mad at myself and my dr for not listening to my body for the past several years. Her blood test was negative, but the biopsy was positive.  She went on the gluten free diet.  I then said I wanted to be formally tested.  Blood test was negative, biopsy was positive and they ran the genetic screening.  I am a DQ2 homozygous, cat 8.  My doctor apologized to me over and over.   I have two sons that were tested for their genes, one is a cat 4 and one is a cat 2.  If they start showing signs of the disease they will be tested by way of egd.  Their pediatric gi said that I probably would've died by 40 if I was left undiagnosed.   So in saying all of that, fight for your test.  Listen to your body, but don't stop living.  Use this as a teaching tool.  Help others that don't understand the disease.  It'll be tough but you can do it...
    • Hi, thanks... Yes, I was diagnosed with glucose intolerance by an endocrinologist. That's when I started cutting back on sugar. Other than some deficits (chromium, testosterone, D + B-12) they found nothing. Except that I also have mild ostopenia, and I often get kidney stones which is strange but they told me not to worry about it and to get more exercise etc. Which is exactly what I've been doing. I can tell you, banning gluten and sugar from my diet is the best thing I've ever done in terms of diet. The pounds came right off. But don't worry, I'm not a walking skeleton yet, lol. Fortunately the weight loss is a result of my diet, I had problems losing weight before the diet and even when exercising. But it all makes sense now. I easily store carbs as fat and have a hard time losing them. I still have the intolerances though... I had a high white blood cell count but they thought nothing of it. It all points to inflammation in my gut somewhere. But hey they're the doctors if they tell me not to worry about it I'll just have to try and figure it out on my own I guess. Meanwhile I'm really happy to see the belly blubber disappear.  Cheers
    • Also, I know that the DQ2 is the most common one representing celiac disease.   I have low IgA-35 and my DGP Igg - 34.8 (medium to strong positive is greater than 30) All the IgA labs were within range. I have Hashimoto's as well. My vitamin D level is 23. I guess I'm wondering how likely it is that I have celiac disease.  The genes I have are not the worst ones to have, I believe, and while my DGP Igg is high it's not crazy high.  I'm still awaiting a call back from the GI as the PA told me to go gluten free for two weeks and then reintroduce it (this was last week while the GI was out of the office).  I guess I'm wondering what the point of that really is... Thanks again everyone for your help and advice as I navigate this...
    • Do you have any diagnosis from a doctor?  Weight loss like you are describing could signal a serious issue that you shouldn't be messing around with.
      You shouldn't be cutting out all of those foods without going to a doctor to figure out what is going on.
      A doctor would be doing testing to make sure nothing serious is going on.
      I'm the first person to say I haven't found a good doctor and I'm suffering with serious pain and issues because of that so I am altering my diet, but I'm following up with the doctor.  So if you haven't schedule an appointment with a GI doctor or some doctor.
    • Back on the gluten foods for about a week now and it's hell, if there was any doubt that the blood test wasn't accurate I can say with unerring certainty now it's definitely gluten causing the problems. The headaches, muscle pains, sore throat (reflux no doubt) and general feeling of malaise all back with a vengeance. As predicted it's worse this time round having done gluten-free for a while and no doubt same will apply in the other direction in 3-4 weeks' time. On the verge of giving up all hope now and this is before I find out how shredded my insides are followed by the further kick in the guts of discovering cross reactivity. What point is there carrying on if the future is this painful, lonely and miserable
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member