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My Blood Tests

JerryK

By JerryK
in Coping with Celiac Disease

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Nancym Enthusiast
Nancym
Posted

Dr. Fine is a really respectable researcher, his livelyhood hinges upon his credibility and that of his labs. I think you can rule out anything shadey from him. Yes, I've met him, heard him lecture. He's a god.

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solange Newbie
solange
Posted

same thing happened to me, everybody thought I was crazy, but then the genetic testing found one gene for sure, another one not so clearly. My grand mother had this and both her kids, one being my father , as well. That is all I need. Just because I don't fit the definition of a true celiac so what. I am sick and I get better without gluten. What else do they need. who makes these calls anyway... I am 43 adn finally found an answer to my life's problems. They can call it pseudo celiac if it makes them feel good . The celiac specialist at UW refused to get me the genetic test. she said it is not a diagnostic tool. Well, if all else fails, take medecine in your own hands. I am so disgusted with the medical protocol I could (and did ) puke. I had Herpetiformis dermatitis all over my hands and legs and they still didn't think it was gluten intolerance. you know, people who go to med school are not the type to rock the boat, they mostly try to match a list of symptom with a list of drugs. There are no drugs for celiac, the answer is so simple they don't like it, so it is dismissed all the time. And if they don't have the answer, it certainly must be in your head.

Oh, and guess what, there is going to be more and more of us with head problems, because grain is being bioengeneered to have MORE gluten, and people who might have been marginally sensitive are going to come out of the woodworks. sooner or later, the criteria for celiacs are going to change to fit all kinds of other symptoms that we won't be able to ignore.

Until then, eat in peace...

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  • Recent Activity

    1. cristiana
      - cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Coeliac or not coeliac

      Hi @CC90 Ah... that is very interesting. Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time? I could be wrong, but I would not be at all surprised if they find something on the next attempt. Coeliac damage can be very patchy, as I understand...
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      Coeliac or not coeliac

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    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possibly way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Coeliac or not coeliac

      By Wheatwacked · Posted

      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Coeliac or not coeliac

      By trents · Posted

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
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