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Blood Testing
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Started by billy,

4 posts in this topic

Posted

how accurate are blood tests? i just had my second negative test in two years even though i've tested myself through trial and error over the past four with textbook symptoms (i do go see my first gi doc in two weeks). has anyone else had negative bloodwork with a positive biopsy? thanks, billy

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I had mostly negative bloodwork (only a positive anti-reticulin IgG), and no biopsy - just a positive dietary challenge. Blood testing is appearing (according to some recent articles) to be less reliable than the statistics show - and this appears to be particularly true for people who don't have much damage to the villi. It's appearing (from anecdotal and other evidence) that there is a sort of "subclinical" celiac disease that is more correctly defined as gluten intolerance, without the severe intestinal damage.

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Hi Billy. The only blood tests I had that came back as positive were the IgG and IgA. All the others were neg. I decided not to pursue a biopsy at that point because I didn't have any symptoms. Lately I have developed what I believe is DH and I'm seeing my GP Friday for a referral to the GI and I'd like to have the endoscopy done.

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Hi there----I had a negative blood test and after reading a lot about Enterolab on these message boards decided to do their most comprehensive test which included gene testing. They got back to me in less than two weeks after I sent the kit back that they had sent me and I am gluten and casein intolerant. I would not have known this if I had relied on my doctor for information. I highly recommend this kind of testing. The results come via email and are pretty comprehensive. I had already been eating gluten-free, but now am eating cf too. I have a six year old granddaughter that has celiac disease and we know it is hereditary.....and now we know where she got it from, darn. I am going to be 60 soon, I probably have had this for a long time, but just got diagnosed as I didn't have the bad gut symptoms until recently. However, I did have some of the other ones which are: migraine headaches, depression and just last winter diagnosed with fibromyalgia/which is pain all over your body in the mucles, tendons, ligaments. I feel this is all leading up to the diagnosis of gluten intolerance now/it is all linked. '

Barbara

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Go To Topic Listing Celiac Disease - Pre-Diagnosis, Testing & Symptoms

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    • BDD
      Fatigue, hair loss and latest labwork

      By BDD · Posted

      I was only asking because when ferritin is low that you can experience hair loss/fatigue etc. even if your other iron levels are in range. This just happened to me so I thought I would share just in case it helps you. Ferritin should be above 50, not just "in range."  I've been on iron supplements and much better now. This may not be your problem at all, but I would have them check your ferritin levels. Low iron or anemia is common with celiac. The ferritin test is measuring how much iron is stored in your body. FYi: Iron binding capacity is really telling you how much protein your liver is making in order to carry that iron around. Usually, iron binding capacity will be higher in the range when iron is low.
    • not diagnosed celiac
      gluten free and awaiting a specialist

      By not diagnosed celiac · Posted

      Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • kam00096
      No idea what to do next

      By kam00096 · Posted

      Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • Ennis_TX
      Mental Trauma

      By Ennis_TX · Posted

      I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • cyclinglady
      red skin, pain, huge belly

      By cyclinglady · Posted

      Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     

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