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My celiac screening came back negative, but I still have a few questions

Catv25
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Catv25 Rookie
Catv25
Posted

I recently had the Tissue transglutaminase IGA test done, and the results came back negative. However the test says that I have an IGA deficiency which can cause a false negative, and from what i'm reading people with low iga levels are at higher risk of autoimmune diseases including celiac. I know when eating wheat products I become sick, weak, tremors, hair falls out, iron levels drop, etc. I suspected it may be celiac for a while, but it could also be something else. I have been eating gluten before the test was done, however there were several days I went without eating any gluten containing products. I read today the recommended amount is 2 slices of whole wheat bread a day for 6-8 weeks. 

 Many people are telling me I don't have celiac since I don't 'look like a typical celiac patient'. I'm open to the possibility that it could be something else entirely. I don't want to be fixated on a diagnosis, I really just want to rule out celiac entirely, since it's associated with lower life spans and a range of illnesses. What should I do? Wait 2 months of eating bread daily then get re-tested? I hate having to restart the diet and making myself sick all over again. Or drop the possibility of it being celiac entirely. There's also the other issue of my doctor telling me that the blood test isn't accurate and the only way to tell is with a biopsy. I don't want to get the biopsy if unnecessary, especially now during covid. 

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cyclinglady Grand Master
cyclinglady
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How IgA deficient are you?  For what I know, (a crazy lady on the internet) your immunoglobulin A ( IgA ) result needs to be close to zero and not just below range for the TTG IgA test not to work.  You could ask for the complete celiac panel.  I test positive to only the DGP IgA, had patches of severe damage via biopsies and was only low on ferritin — no GI symptoms.  You should know that some celiacs are seronegative (usually because they are IgA deficient).  If it has not been that long that you have been gluten free (like a week or two), go back on gluten for a week or two and get retested.  But this is a conversation you should really be having with a GI.  Something is wrong.  You should not be low on iron.  

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Catv25 Rookie
Catv25
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45 minutes ago, cyclinglady said:

How IgA deficient are you?  For what I know, (a crazy lady on the internet) your immunoglobulin A ( IgA ) result needs to be close to zero and not just below range for the TTG IgA test not to work.  You could ask for the complete celiac panel.  I test positive to only the DGP IgA, had patches of severe damage via biopsies and was only low on ferritin — no GI symptoms.  You should know that some celiacs are seronegative (usually because they are IgA deficient).  If it has not been that long that you have been gluten free (like a week or two), go back on gluten for a week or two and get retested.  But this is a conversation you should really be having with a GI.  Something is wrong.  You should not be low on iron.  

 Hi, thanks for the reply. My IgA levels were lower than 0.5 u/ml. I was strongly considering getting retested just to be sure. But is there any point in getting retested if I'm IgA deficient? Won't the tests show a false negative regardless? Also worth mentioning i've been taking iron supplements daily for the past 2 1/2 years with no changes to my levels, I've been retested several times. 

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cyclinglady Grand Master
cyclinglady
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Then the IgG tests are normally ordered if you are IgA deficient. 

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BergieF Explorer
BergieF
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3 of my children and myself were all negative on the celiac panel bloodwork.  You could always have the genetic test and biopsy.  We had ours done through Prometheus.  The link is listed below.  

 

https://www.prometheusbiosciences.com/celiac-genetics/

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    • trents
      Waiting for urgent referral.

      By trents · Posted

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
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      By Zackery Brian · Posted

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    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      Joint swelling when ill even on gluten-free diet

      By knitty kitty · Posted

      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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