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Hello! I'm just wondering if anyone here can offer any advice on how to convince doctors that I'm gluten intolerant. My history- I've always been underweight no matter what I eat and prone to illness, and I've had severe pneumonia three times, one bout requiring a partial lobectomy. I never considered any sort of disease as the culprit for my poor health, but I accidentally stumbled onto celiac disease back in 2011. I'd been running daily for several years, and was trying to bulk up on the cheap by eating a box of pasta a day, oatmeal, bags of cereal, and any other inexpensive high-calorie foods I could get my hands on. For about a year, I began dropping weight and developed painful swollen hands. I finally went to the E.R. after one of my eyes turned bright red and felt excruciatingly painful, where I was referred to a specialist and received an iritis diagnosis. A couple weeks later, I abruptly lost the enamel on one of my front teeth. I looked up the symptoms, and found that it was textbook celiac. Without reading too much about celiac disease, I decided to cut out gluten just on a whim to see if my symptoms improved. Within a week, I started rapidly dropping weight and my face went white. At its worst, I passed easily-digestible gel cap vitamins whole. I did some more research, and found that a minority of patients actually get worse when they cut out gluten. Considering that I had no idea that this phenomenon even existed, yet still got much worse even though I was expecting to feel better, that clinched it for me - I likely had celiac disease. Once the "withdrawal" period passed, I ended up gaining 20 pounds despite the fact that I was eating far less than before. Whenever my bowel habits suddenly changed for the worse, I'd scour my diet and find that I made a rookie mistake - eating soy sauce, cross-contaminated oats, etc. I didn't have health insurance until several years ago, so I never sought care for my gastro issues. I ended up in the hospital in 2013 for a necrotizing strep infection, where I received a blood test that finally confirmed celiac disease. Fast forward a few years, and I'm finally insured and want to do something about my symptoms. I went for my first appointment with a family doctor, who treated me like a wackjob fad dieter. I didn't have copies of my medical records yet, so I had no defense at the time. Every symptom I told him was met with the same condescending dismissal - "who TOLD you you had iritis?" etc., and he then proceeded to give me an impromptu blood test to check for celiac. When I asked "But don't you have to eat gluten first to test positive?" he smirked and gave a non-answer - "Oh, I wouldn't ask you to eat a Twinkie and get sick." The nurse was openly hostile after running the blood test, and sharply said "you're fine" before the doctor came back into the room and gave me a lecture about "assuming" that I have an illness. He then referred me to a gastro doctor. The gastro doctor did an endoscopy and colonoscopy, and found iron deficient anemia and ulcers in my small intestine and duodenum. He had me eat gluten for two days leading up to the procedures, which he claimed was ample time to test positive for the disease. I'm aware that doctors tend to take it as a personal affront when patients disagree with them, so I played along and acted overjoyed to find out that I could eat wheat again. His diagnosis was Crohn's disease. But when I politely asked if my tooth enamel defects are a symptom of Crohn's, he confirmed that they aren't, but had actually never even heard of celiac disease causing tooth enamel loss. After gently pursuing this line of questioning further, he finally said "I'm not a dentist" and walked out in a huff without saying goodbye. No follow-up care was offered. Ever since that initial GP visit, I've had nothing but overt dismissal from every doctor I visit, even when I bring copies of my medical records. I feel that the more doctors I see who make a snap judgment that I'm a hypochondriac, it just adds yet another doctor to the list of physicians who put down "hypochondria" or "anxiety" in my medical records, which makes it even more difficult to be taken seriously by future doctors. My health has been failing me in recent years - no matter how immaculately I eat, I have to get up at least four hours before I need to leave the house so I can get repeated bouts of severe diarrhea. This entails literally getting up at 2 am to get to an 8 am appointment. I can't live like this much longer, but I've stayed away from doctors in recent years because I literally break down in tears from sheer frustration once I leave the office. Can anyone offer any advice on how to handle doctors? I always make sure that I defer to their judgment and try not state anything in absolutes, and I'm naturally a very friendly and empathetic person, so my demeanor isn't confrontational. I'm dreading going to a new gastro doctor because I'm half expecting to be told that I'm imagining everything. I'd think that a Crohn's and iritis diagnosis, plus a positive blood test, would be enough to convince most reasonable doctors, but apparently not. Thanks!
Eclara posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsSo what's the verdict on false negatives? Because I had my biopsy four years ago and it was negative, my IGA was ignored because it was always 10-20 points below the normal range- but my stomach has never completely recovered from the hellish 8 week pre-biopsy gluten trial I did in 2012 and I have been progressively more sick each year in new and exciting ways. Now I've been diagnosed with Sjogren's at 24. I plan to go back to actually watching for gluten cc instead of just eating whatever claims gluten-free status without certification either way but I admit I still wonder about Celiac each time a new digestive or autoimmune symptom pops up.
Lizninn posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsHi everyone, I'm a 27-year old woman living in the Netherlands. I first started seeing my GP in 2009, when my stomach/belly problems got really out of hand and I got extremely tired en depressed (and lots of other strange symtoms). To make a long story short: I had a colonoscopy that showed a mild chronic proctitis (probably not Colitis Ulcerosa or Crohns) I was diagnosed with a huge B12 deficiency (52); Folic acid deficiency (4) Ferritin deficiency (3) Vitamin D deficiency Celiac bloodtest was negative, so the doctors were very clear I didn't had it. I knew the test wasn't 100% sure, but they -I've also got a second opinion- refused to look any further. I've been thinking about Celiac before I went to the GP en these test results only got me more suspicious. I've never had a gastroscopy and I still don't know the cause of my B12 deficiency (I also had no Pernicious Aneamia antibodies). I gave up and figured I had to feel better with B12 shots en other vitamin suppletion. My stomach problems got way milder, but I never felt any better. Actually, I only got feeling worse. I was extremely tired all the time, got more depressed, couldn't study anymore not only because of a tired and weak body, but I coundn't concentrate anymore and basically got really STUPID. I had to quit my studies and there I was, doing absolutely nothing. I can't study, I can't work. I did go back to school after a 2,5 year break, but I ended up home again within a month. I had to eat a lot to stay up on my feet, but I didn't feel better. It made me go to the bathroom more en I still was very tired. Now, 7 years later I still feel horrible, possibly even worse than before. I still get weekly B12 shots and daily vitamin D, folic acid and magnesium. I'm so tired and I have to get more than 12 hours of sleep a day (more if I can). My body is weak, sometimes I feel like I can't stand up anymore. I can't let Celiac go. Apparently there is still something that makes me sick and food is the only thing left. Also, the proctitis and deficiencies are very common with Cealic. The extreme fatique, depression, brain fog... I find it hard to believe that it's all just a coincidence, so I went to (my new) GP asking for another Cealic test (maybe after 7 years I developed antibodies?). The results were negative, with IgA tTG: <1. So very very negative. My total IgA was 0.7 (references according to my lab <0.7 - 4.0) They didn't do any further testing (IgG) I definitely have a LOW IgA and a partial IgA deficiency (when your IgA levels are below 1.2). I've been searching all over the internet and according to some studies you already have a severe/"complete" IgA deficiency when you are below 0.8 or even 0.9. It's confusing, as I am below those two. My question is: is a total IgA of 0.7 mean that I can't make antibodies and my Celiac test will always be negative, while my actual chance of having Celiac is higher? Does anyone have had the same thing? It's all so confusing and I just can't take it anymore. It's hard to believe all of the aboves are just coincidental. Hope someone can help me out, cause I really can't take this anymore and the doctors don't know anything about this and keep saying everything is fine. I still am fighting to have some final answers and I won't give up this time. I made this topic only to get some answers to the question above. I also would love to hear similar stories. Thank you for reading my (not so short after all) story!
FoodLover posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsI have about 19 of the symptoms in the short list or have done over the last 30 years, much more on the long list. My daughter is 3 and a half and is starting down exactly the same road as me at the same age. I am trying to figure this all out so she doesn't have the same unjointed and undiagnosed medical history as I do. We had bloods taken and these are the results. Any help in pointing out if there is a potential we both had a false negative or any ideas of any other tests at our next GP appointment would be welcome. We have had a few weeks being gluten free based on the food intolerance IgG results and it has improved things to some extent but we have found when it is removed we are very sensitive to low level cross contamination & topical use (not intentional!) which seems my steepest learning curve it is always hiding somewhere just when you think you've cracked it. There are lots of other results which I'm sure would be relevant if I knew what I was looking at! I have been trying to research as much as I can but it is all a little overwhelming after a while. Thanks in advance for any guidance you can give. Here are my DD results including a couple of the out of range anomalies from the blood sheet:- 25 OH Vit D 75mmol/L (50-200) Gliadin Antibodies IgG 0.0 (Negative: <7u/ml Equivocal: 7-10 u/ml Positive: >10 u/ml) Gliadin Antibodies IgA 0.1 (Negative: <7u/ml Equivocal: 7-10 u/ml Positive: >10 u/ml) Tissue Transglutaminase IgA 0.00 u/ml (0-10) Reticulin Ab"s (IgA) Negative Endomysial Ab"s (IgA) Negative Total Immunoglobulin E 36 kIU/l (0-60) Folate serum 4.9 ug/l (4.6-18.7) Active B12 185 pmol/l (25.1-165) Bicarbonate 19 mmil/l (22-29) Aspartate Transferase 38 iu/l (0-31) LDH 329 iu/l (135-214) Phosphate 2.07 mmil/l (1.45-1.78) HDL Cholesterol 1.1 mmol/l (1.2-1.7) Platelet count 500 x10 (150-400) Monocytes 0.64 x10 (0.7-1.5) TSH 3.16 mli/l (0.85-6.5) Free T3 5.6 pmol/l (3-9.1) Separate foodprint test IgG Gliadin 70 (>30u/ml elevated, 24-29 u/ml borderline, <23 normal) Separate foodprint test IgG Milk 127 (>30u/ml elevated, 24-29 u/ml borderline, <23 normal) And my results including a couple of the out of range anomalies/same as above from the blood sheet:- 101 OH Vit D 75mmol/L (50-200) Gliadin Antibodies IgG <0.0 (Negative: <7u/ml Equivocal: 7-10 u/ml Positive: >10 u/ml) Gliadin Antibodies IgA 3 (Negative: <7u/ml Equivocal: 7-10 u/ml Positive: >10 u/ml) Tissue Transglutaminase IgA 0.5 u/ml (0-10) Reticulin Ab"s (IgA) Negative Endomysial Ab"s (IgA) Negative Total Immunoglobulin E 53 kIU/l (0-100) Folate serum 6.7 ug/l (4.6-18.7) Active B12 78 pmol/l (25.1-165) Bicarbonate 21 mmil/l (22-29) Aspartate Transferase 24 iu/l (0-31) LDH 243 iu/l (135-214) Phosphate 1.23 mmil/l (0.87-1.45) HDL Cholesterol 1.4 mmol/l (1.2-1.7) Platelet count 222 x10 (150-400) Monocytes 0.41 x10 (0.2-1) Separate foodprint test IgG Gliadin 70 (>30u/ml elevated, 24-29 u/ml borderline, <23 normal) Separate foodprint test IgG Milk 100 (>30u/ml elevated, 24-29 u/ml borderline, <23 normal) So for the symptoms hope I have got the gist of our symptoms down below but as a 'brief' summary over the years on and off I have had:- Floaters/spots & black lines in eyes & burst blood vessel, bloodshot eyes White flecks on teeth Mouth ulcers Joint/muscle pain Stomach pain Reduced growth Wind Indigestion Constipation Slight blood on toilet paper when wiping Asthma diagnosis but it wasn't Increased pulse Palpitations Blood pressure highs & lows Lethargy Fungal Infections Bruising easily Irritability Iron deficiency Dizziness Light Sensitivity Headaches Cold hands & feet - Raynauds Skin pimples - not itchy Itchy skin Runny nose when in tractor Sleep Issues Bloated stomach Sodium deficiency Mind fog Memory issues Lack of concentration Large nose bleeds sometimes every day for a week or more Back pain Nail ridges Cravings & huge appetite Vomiting Weight Loss Immune Issues I've had gastric issues for as long as I can remember including terrible wind - sorry for TMI in this post but diagnosed with ME while I was still at school when they had no other ideas so just been living with the on off issues, I was thinking this was as good as I could get for me. When I was 5ish I often had a very small amount of blood following a bowel movement, really itchy and probably had thrush never wanted to discuss it at that age really but I think I just assumed everyone did and I had really erratic bowel movements either constipated or quick. For years I was under par and picked up pretty much every infection going. Had continual fungal infections huge verucas on my feet. I had chronic anaemia - sat in school nurses office frozen with layers of clothes on while they tried to warm me up by an electric fire. The doctors eventually tried to draw blood which was so thick they struggled to and then when the results came back ordered me down to the surgery immediately to take iron tablets otherwise I would have to go for a transfusion. They never established a cause. Now I look back came out in a red itchy rash on my neck when I used the wheat shampoo that I loved the smell of, was also addicted to bread, had near enough constant lethargy, dizziness & brain fog. The times when I have been 'better' have been coincidentally when I have been eating less bread and trying to keep fit! My diet over the last 10yrs has never been high in processed foods really (other than a loaf of bread, baked beans & oatibix). Had some IgG tests done and Gliadin, Wheat, Barley etc all came up along with Dairy and pretty much most foods with high levels of natural glutamates. At the same time blood test for coeliac was done and came up negative. At this point though I had cut back on bread perhaps having it every other day which was my only real source of gluten but was eating oats for breakfast so possible contamination there together with all the other stuff you don't realise. I thought I had been off gluten for longer but due to identifying other sources it is probably now 4 weeks (together with dairy & eggs). Brain fog has lifted & have lost 2 stones in weight but keep losing it so a little concerned about that. Had plenty of other food sensitivities that have appeared over the years but have been able to reintroduce some with no issues. Have not tried to reintroduce gluten but had a possible contamination issue a week ago - I got really itchy forearms wrists and neck, face eyes and scalp, lethargy, brain fog and needed to head to the toilet pdq. Identified this to be a cake tin contamination. The second was three days ago a supposedly gluten free buckwheat cracker (my only current 'processed food' labelled gluten free and containing only buckwheat & sea salt) which again gave the intense itching, lethargy, stabbing pains like needles poking below belly button and needing to be near the toilet. I didn't realise this was the cause until yesterday when I gave them to my daughter too and my symptoms worsened in an hour and she started to itch, lethargy etc. The itching disappears after 24 hours or so as does the lethargy the digestive issues take a little longer 2-3 days. Now I have lost the weight on these occasions I can see that I am bloated too. I had forgotten the itching of my youth and I would think my body just gave up displaying it as a symptom but now having been gluten free it is more severe when it does happen. My underarms had been looking a little yellow which had disappeared after being gluten free however it has returned in one underarm after these two occasions. I lived on bonjella as a child and on these two occasions I have had mouth ulcers. I also bruise fairly easily and always have done. I am happy to stay gluten free as I can see for me that is perhaps the key to all my unexplained health issues over the years but thinking I need a diagnosis for the sake of my daughter. I don't want to put her through any unnecessary stress. Even my verucas are reducing in size - bonus. Her changes in temperament have settled down following the elimination of gluten, dairy etc she has increased her vitamin intake slowly and is tolerating them. In the incident with the buckwheat crackers she had a visible purply red rash on the inside of her elbow which is where she had been getting eczema as on the back of her knees. The times this got worse were when she started toddlers & pre-school and coincidentally started eating bread sticks and more sandwiches - I had blamed the oils and preservatives! This itching has subsided and she has not had any visible dermatitis type issues until the contamination incidents. When she was a baby she often had a rash around her mouth and on her wrists if the weetabix at breakfast was not wiped off immediately I always thought it was the milk. She became addicted to bread, as did I when I was young and hence one of the reasons for cutting down on this considerably as I could see it was an issue as her tummy looked overly bloated but was thinking more of it from the preservatives, carbs etc angle. We moved to oatibix then porridge a year ago and although we had a slight improvement I can see now that this was not the best of ideas! I now make everything we eat fresh and am enjoying my time in the kitchen. This week she came back from school lethargic and pale and was unable to sleep, something we both suffer from when there has been gluten contact. After a lot of detective work she had fed the ducks with bread on a school trip to the farm.