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Non-Celiac Gluten Sensitivity Needs Better Diagnosis Standards - Sfgate

Scott Adams

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Scott Adams Grand Master
Scott Adams
Posted

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SFGate

None of them has celiac disease, whereby gluten elicits an autoimmune response that destroys the lining of the small intestines. Also, none has a wheat allergy, a condition that leads to the release of histamines from immune cells, similar to what ...

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NatureChick Rookie
NatureChick
Posted

This article bothers me quite a bit. It is basically advocating for creating guidelines to define a "syndrome", which just means that the medical community doesn't know what is going on but would like an official bucket into which to throw these patients so that they can move on.

How about, instead of creating some guidelines, the medical community does some more research. People are having symptoms that are as bad as if they had celiac disease, but test negative for celiac, and yet they have the same positive results from going gluten-free. So lets figure out what their reactions are and how those reactions can show up in a blood tests. Lets figure out more rather than dump what is probably several different problems into a common bucket and think that we've accomplished something.

spirit22 Newbie
spirit22
Posted

Hi ~ I am new here and am one of those who underwent the celiac panel (tested 8 points high on the tTG IGA but negative on the rest of the panel), underwent endoscopic biopies (several of them, each one cut into smaller pieces by the pathologist) and received a negative diagnosis of celiac. I asked to re-take the celiac panel a week after my endoscopy. Since I had been gluten-free that week, my higher IGA reading had reduced down within the 2/3 normal range.

 

My frustration lies with my gastro doing the procedure and then "letting me go out into the world on my own", with no definitive diagnosis, not even "You MAY have a gluten-sensitivity"! Nor was I instructed to find myself a dietician if I planned to go gluten-free. Has anyone else experienced such indifference?

 

I am seeing my primary doc on June 17th and plan to ask if she will (kindly) order a celiac genetic marker test to see if I might have markers for it. I am hoping I do not have markers but I'd still like to know for sure. Since the endocscopy procedure, my stomach problems have quieted down to almost nil but now I'm having problems in my lower abdomen. To put it mildly, I am struggling here and feel I have no physician input.

 

I have IBS that I am already dealing with and have found that in going off gluten, my IBS-constipation has returned like a demon. I've been reading everything I can get my hands on to find out which gluten-free foods have the most fiber and trying to stay away from the ones who have zilch to little (like white rice). Is anyone else dealing with IBS-C plus gluten-sensitivity? If so, what are you eating and how are you staying out of the constipated zone?

 

Any help is much appreciated!

NatureChick Rookie
NatureChick
Posted

IBS is another one of those diagnoses that doesn't actually tell you what the problem is. Either Irritable Bowel Syndrome or Inflammatory Bowel Disease, neither tells you a cause or a solid treatment plan. They aren't actually diagnoses!!!

My "diagnosis" of IBS was actually a B12 deficiency (from malabsorption) that was bad enough to cause abdominal pain. Don't ever be satisfied with an IBS diagnosis. Keep looking for answers. 

spirit22 Newbie
spirit22
Posted

IBS is another one of those diagnoses that doesn't actually tell you what the problem is. Either Irritable Bowel Syndrome or Inflammatory Bowel Disease, neither tells you a cause or a solid treatment plan. They aren't actually diagnoses!!!

My "diagnosis" of IBS was actually a B12 deficiency (from malabsorption) that was bad enough to cause abdominal pain. Don't ever be satisfied with an IBS diagnosis. Keep looking for answers. 

Hi Naturechick ~

 

Thanks for the suggestion about checking my vitamin B-12. I have an upcoming appointment with my primary doc & will inquire about being tested.

NatureChick Rookie
NatureChick
Posted

spirit,

I have no idea what might be causing your problems. But at some point, you'll have to stop hoping for other people to solve it for you. All any of us can do is offer ideas to research further, but I wasn't offering ideas above, just ranting against the medical establishment.

spirit22 Newbie
spirit22
Posted

Naturechick ~

 

Thanks for your advice. I really appreciate you taking the time to post.

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    • trents
      I’m terrified it’s too late for me😭

      By trents · Posted

      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’m terrified it’s too late for me😭

      By Cathijean90 · Posted

      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
      diagnostic testing variance

      By trents · Posted

      Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge.  Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.
    • Scott Adams
      diagnostic testing variance

      By Scott Adams · Posted

      Since nearly 40% of the population have the genes for celiac disease, but only ~1% end up getting it, a genetic test will only tell you that it is possible that you could one day get celiac disease, it would not be able to tell whether you currently have it or not.
    • KDeL
      diagnostic testing variance

      By KDeL · Posted

      so much to it.  the genetic testing will help if i don’t have it right? If theres no gene found then I definitely don’t have celiac?  I guess genetic testing, plus ruling out h.pylori, plus gluten challenge will be a good way to confirm yes or no for celiac. 
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