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Found 8 results

  1. Hello Curious what your thoughts are. We are currently awaiting to get into children's hospital with my daughter. Her blood work showed low iga, not deficient but below normal so her Ttg iga wasn't positive. My hubby and I believe she gets it from him so he is also being tested, however he ate gluten free for a couple of months, not super long before he went back on gluten. He had two different blood tests both not positive however his Ttg-iga did increase. Do you think it would have increased if it's not possible it's celiac. His results: March 5 ttg iga 8 Ref range <16 units/ml normal April 16 ttg iga 13 ref range <16 units/ml normal I know these aren't the full panel. I just have a hard time believing his numbers wouldn't be rising if there wasn't something going on and I'm wondering if you've heard of this happening. Thanks
  2. Hi, I'm new here. I was diagnosed 5 months ago. I have a question about interpreting my test results. Originally, my TTG IgA was 130 (normal is below 15), deamidated gliadin IgA was 50 (normal below 15) and deamidated gliadin IgG was 22 (normal below 15). I asked my doctor, if I needed a biopsy, but he said it was unnecessary. 4 1/2 months later my TTG IgA was 30, deamidated gliadin IgA was 7 and deamidated gliadin IgG was 6. From what I have read, it is pretty normal for the TTG to take a while to go down to normal, but my doctor insisted it was elevated because I'm still ingesting gluten. I've been very careful and read a lot about celiac disease. I'm confused about whether I'm not strict enough or I just need to wait for it to go down? What does it mean that the deamidated gliadin antibodies are now normal? Can they be normal even if I ingest gluten? The only stomach problem I have is bloating, which is better, but not gone. So I can't tell if I get glutened. Thanks, I would really appreciate an answer. I'm pretty confused :-)
  3. If I have been doing the gluten free diet for exactly 8 weeks now, how many weeks do I need to eat gluten daily in order to have an accurate blood test? How much do I need to eat per day? In August 2016 I had the ttg-iga blood serum test and got a 4.0 units on a scale where > 4.0 means antibody detected. I had the endoscopy in August and was told I have gastritis, duodenitis and intestinal metaplasia, but no villi flattening. Yesterday, I went digging in my health online health records and found one from 2012 (!!) that showed a ttg-iga serum test that I got 38.3 units on a scale of <20 is negative, 20-30 weak positive, >30 strong positive. I was still seeing my pediatrician and SHE. NEVER. SHOWED. ME. THESE. RESULTS. I had gone to her complaining of awful constipation, and was told everything was fine in the tests. Even my mom remembers being told the results were fine. It's clearly flagged bright red that I got a high reading four years ago. So now I requested to retest and get to the bottom of this! Any suggestions are welcome. I am tired of the health care system failing me. If anyone has a reco for a specialist in the greater philadelphia area, I would be interested. thanks!
  4. Hello, After 17 years of issues, I was told a month ago that I have Crohn's disease. This did not set well with me and I just feel it in my gut (pun intended) that it is not what I have. I have bowel issues, abdominal pain, bloating, nausea and vomiting, and joint pain. In 2014 I had my IGA and Ttg Iga check- it came back a 4. I was told that was negative and a positive would be over 20. Now that I am having many more issues, I was tested again- after I was gluten free and on steroids and it was a 0, but now I was told it would be positive it over equal to or over 4. It was the same lab who did it, so I called and all they would do is refer to me their website with info on the tests. It says over 4 is a positive. So could they have made a mistake on the first paper in stating what a positive was? Has anyone every been given a range of over 20 as positive? All I can find is 4 or over. Wondering if I really am celiac or actually do have Crohn's. thanks for any help you can provide.
  5. Hi everyone, I would like to introduce myself....sorry if its a bit long. I found you guys a few weeks ago after finding a possible link between my varied symptoms and gluten sensivity/celiac. So, i really wanted to say hi and thanks for the wealth of information on this forum which specifically has helped me at the doctors this morning!! First let me explain……. Here is a summary of my history: Child to young adult: Unexplained fainting Sinusitus Throat infections Mild asthma 30´s Chronic headache Migraine Brain fog Vertigo attacks Dizziness Fatigue IBS diagnosis following chronic diarrhea with urgency and abdominal pain Severe sickness throughout 2 pregnancies and generally feeling unwell Post natal depression diagnosed after both births 40´s TMJ Chronic headache Migraine From 2009 - 24/7 dizziness with associated symptoms such as inability to concentrate/think, confusion, disorientation, vertigo attacks. Huge amount of tests with different specialists including MRI scan. Diagnosed with Migraine Associated Vertigo in 2011. Decreasing energy levels Decreasing muscle strength Anxiety and irritability Joint pain Diverticulosis diagnosed following routine colonoscopy in 2010. (Mother died of bowel cancer.) From October 2014 - Fatigue, aching limbs, numbness in hands and feet, From November 2014 - Chronic diarrhea with urgency and stomach pain. Weight loss From Feb 2015 - Intermittent diarrhea, chronic total abdomen pain, shortness of breath, fatigue continues Yesterday – Some sought of breathing attack……Asthma attack? Panic attack? The locom GP standing in for my normal GP ran some basic blood tests in November after the onset of symptoms late October of last year. All negative. In February on return to the GP I saw by chance the locom again and he said he would run a celiac test as well as other specific tests (thyroid (again) for example) and a stool sample. Now i should also mention that my 16 year old son has also had intermittent varied symptoms over the past year/ 18 months and had basic blood tests run last year. His symptoms are: Headaches, nausea, occasional diarrhea, intermittent abdominal pain (weekly,) weight loss, night sweats. Sporadic fatigue. He also has ADHD. So the locom doctor said that I should see my sons doctor and get him tested too. Which I did and he said he would run the test for celiac as well as other specific things. So we both had our blood taken about 10 days ago. (We have not made any changes to our diet yet and are consuming gluten.) I could see from the print out i was given for the nurse that both of us ONLY had the tTg IgA done out of the celiac panel.... I go the GP tomorrow for my results but I have been this morning with my son to see his GP. I of course went armed with the full list of the celiac panel tests as having spent some time on this forum I just knew that I was going to need them..........and it´s a good job I did... All of my sons tests were normal which on one hand is of course good news but also I think we are no further forward with knowing if he may have celiac disease. tTg IgA - 0,1 U/mL <12 negativo. 12-18 undetermined. >18 positive So, his tTg IgA is very low isn´t it...0,1? and could be a false negative given that we do not know what his Total IGA serum is???? (immunoglobulin A??) He could be IGA deficient.........?? Am I understanding this correctly? So I asked about the total serum IGA and how the tTg IgA could be a false negative but he didn´t seem to know what I was talking about and kept saying that the IGA antibodies were low so therefore no inflammation. I persisted about the Total Serum and showed him the celiac panel list and he agreed to run an Immunoglobulin A but not any of the others. So my son will go back tomorrow morning for the nurse to take the blood and wait another 10 days for the result!! I think my appointment tomorrow is again with this locom and I really hope he has read up a little about celiac testing by then….I know that it is best not to go gluten free until all the testing is complete but this could take forever at this rate….I have already decided that if all my testing is negative that I will go gluten free anyway as I have nothing to lose and can only possibly gain…. I understand the national health service not wanting to run the full panel immediately due to the cost but you would think that they would run a Total Serum IgA with a tTg IgA. If absolutely necessary we can look at going private to get all the required testing done with a gastroenterologist if no referral is made to a specialst on the spanish health system. Thanks for listening and I would welcome your thoughts on our symptoms and testing so far/ and in the future.
  6. Hi, I am new to these boards and am looking for some advice. I have been doing the Amazing doctor race for over 25 years now and the best anyone can come up with is Chronic Fatigue Syndrome / Fibromyalgia. I have been battling this illness for over 25 years now and I just need something to end. About every few years I see a new doctor who wants to figure out what I "really" have besides Fibro. They do some tests, send me to some specialists and all roads lead back to Fibromyalgia. UNTIL LAST WEEK. I just moved to another state and started with a new Dr. A nurse practitioner with her doctorate in medicine and a well known diagnostician around here. So I went with intentions of getting back on Fibromylagia meds. Rewind, about 3 1/2 years ago I was given a glimmer of hope for all my problems. Cymbolta. Yes, it helped. Made some of my joint pain go away, made me a little less angry. But that was about it. I lasted about a year and then I wanted to try and get pregnant again (I already have one child). So I had to go off it. Going off this medication really pin pointed the decline of my health. Two miscarriage after that and now I can't get pregnant after being able to get pregnant 5 times quick in my life. Fertility doctor has no answer despite my eggs being a little less great due to my age. But he said it is still possible. All my fertility tests normal. Back to the new nurse practitioner. Of course, like so many, after seeing me for my initial visit, reading my thousands of medical records, listening to me list my host of one million symptoms from the past 25 years (chronic sleep deprivation, chronic fatigue, no memory, exercise intolerance, massive brain fog getting worse, chills that come and go, stomach bloating, chronic constipation, random bouts of IBS, unexplained weigh gain, thyroid cancer (fine now and levels are always fine), Wolf Parkinsons White (heart was ablated, fine now with that), eye swelling upon waking like an allergic reaction, massive scabs and head dandruff, pin and needles in feet and hands, arthritis in neck, chronic neck pain after injury, burning muscles and eyes after exertion, weird bladder issues, choliostatis of the liver when pregnant, muscle stiffness that is worse on awaking, chronic headaches plus migraines (sugar induced I think), weird chemical sensitives that come and go over the years, late puberty, miscarriage and infertility for no reason, loss of tooth enamel for no reason all of the sudden ( black on my tooth but dentist said loss of enamel, nothing else), stomach acid, cystic acne, irregular periods all of the sudden in the last few years, weird rashes and extreme itching for no reason, concentration issues, ringing in ears, eye twitching, eye sensitivity to light and night driving, hoarseness, muscle cramps, etc... And the list goes on), she decided she wanted to get to the bottom of "this Fibromylagia", and she actually used quotes with her fingers when she said it. She looked at some older tests I have, said I had some slight elevated liver enzymes (I have had this for years and years), and wanted to send me for a stomach ultrasound. It came back fine. Nothing wrong. The she sent me for a host of blood work. Different panels, didn't tell me what they were. Went and came back for the results. She said again I have slightly elevated liver enzymes, slight elevated cholesterol level (which I had had before as well despite eating a low fat diet my whole life). She said I have an elevated cortisol level, she said it could be why I can't lose weight but I needed to see an endo for it. I also had a large vitamin D deficiency requiring prescription in a huge dose once a week. The she hits me with the whopper. She did something called a Celiac panel and I have Celiacs. If you want to live, you can't eat wheat. No gluten, ever again. WHAT??? This women must have been out of her mind. Did she know who she was talking to? I am the carb queen. I live for it. Bagels, cereal, low fat cookies. No way lady, you must be wrong. There is no way I can stop eating that stuff. Quickly tears swelled up in my eyes. First I thought she was some holistic freak. Then I doubted it because no doctor has ever told me I had anything wrong with my blood work. I just didn't believe her. I left mad and sad. I went home to process. Here we're my numbers.... Immunoglobulin A : 128 (normal, range 70-400) Gliadin IGA Deamidated: 2.1 (normal, <20) Transglutaminase IGA Autoabe: 20.8 (out of range <15.1) I started reading and reading and reading. Could this really be? Could this be the answer I have been chasing for the past 25 years? I read more and started to wonder why she didn't advise me to go see a Gastro, the next obvious choice. She scared me. I immediately stopped gluten, just in case and to see what would happen. She said it would take time but maybe in two weeks I would have some relief. I researched, dropped $300 on gluten free products, bought every type of everything you could imagine, got schooled by another gluten free person, etc... I also immediately called her asking why she didn't recommend me for an upper endoscopy. She said she didn't need to, this is what I have. I asked her for a recommendation anyway. I had to know, I have to know. There is no way I can not know. I make the appointment for five days later and I go on my gluten free way. Five days of gluten free, maybe a little more clear but not so much difference. My stomach was doing circles, it's like my system didn't know what to do. I was in the bathroom straight for the first 24 hours, which is usually the opposite of what happens to me. Five days later, I go to the 1st Gastro. His nurse practitioner sakes me some questions, takes my vitals and puts me in the Dr's office. The guy walks in, doesn't shake my hand or introduce himself, looks over my blood for two seconds, says I don't know if you really have this but I will do the test, signs me up and walks out. Five whole minutes this jerk spent with me and asked me nothing. He says, don't worry, you can eat gluten. It doesn't matter either way, it won't effect the test. I asked him about the liver and the vitamin D, he replies it has nothing to do with any of this. I leave with a endoscopy planned for a week from that day. I left feeling upset. I got home and decided this was not a doctor I wanted to give my money to nor is he a doctor I want doing a procedure one me. What happens if I don't have Celiacs and I still have to deal with this guy to help me find something else? No way. I left and went to a dinner. I ate my first dose of gluten in form of two pieces of rye bread. Instant bloating. Wow, that's weird. I never even realized all these years that feeling in my stomach was bloating. I always just thought I could feel myself gaining weight every time I ate a carb. Lol. I continued that night with a bowl of ziti. It happened again. Wow. I went on to eat some cheese crackers before bed, just to see what would happen. Besides feeling like crap all day and exhausted (as usual), I woke in the morning with massive swelling under my eyes, like I had bee stings. Black circles with bee stings on top. You could see the blood vessels popping out. Stomach rumbling all the next day. Constipation comes back. I was shocked. Cold adding the gluten back in really make me feel something? I never in my life associated any of my pain or ailments with bread or pasta, never with gluten, I didn't even know what gluten was till five days ago. Wow! I decided from that moment on, no matter what, I NEVER WANT TO EAT GLUTEN AGAIN. It just didn't make me feel good. Since I added it back, my body is in what I call a "serious Fibromyalgia state". Eyes burning, body hurting, feels like I haven't slept in 10 years. My cognitive is so, so bad. Stomach is turning, bloated. And guess who just joined me? My hemmiroid decided to make an appearance all of the sudden. It's been a while but we reunite. Thanks! I go home, get some good recommendations from family to a good Gasto. I go. He spends an hour with me, learning my case, listening to everything from the beginning. Checking all my blood. Says this is a possibility that I have Celiacs, he sees it more and more and if I don't have celiacs, I probably have a sensitivity to gluten. He tells me he wants to do the endoscopy but now that I ate gluten free for five days, he wants to be sure we don't skew the results and wants me to wait another two weeks. And here is the kicker... You must eat gluten the whole time. SERIOUSLY??? Oh God, I'm going to die! I go home, cry some more, eat my gluten (and sneak in a few non-gluten things here and there, hope it's OK?) and now I wait. I am so anxious. This all makes so much sense. I can't stop researching and can't saying "WHAT If" "WHAT IF"??? What if this is my answer? What if this women is my savor? What if I have been poising myself and killing off my organs for 25 years and no one found it? What if??? That is why I come to this board, turning to people with I'm sure similar stories. I have endured so much. I have a sweet little five year old that is denied a functional mother. I have a great business that is suffering. I have a relationship with my husband that could be so much better. I have so much rage and anger and pain and I want there just to be an answer. Please, there has to be, please let this be it! Opinions from my test results? I know it sounds like I have it from everything I'm saying but what about the blood? How likely is it that I have this? Thanks for listening!!! I will post my endoscopy results here in two weeks, I promise. From the girl that couldn't imagine giving up "carbs" to the girl that is dying to, literally.
  7. I'm about to have a biopsy.....what were other peoples TTG IGA's prior to a biopsy....? Mine is above 300..... From what I've read it seems likely I've got celiac disease....what wee other peoples TTG IGA's? Many many thanks
  8. Hi all. I found this forum while trying to search for the meaning of my test results. If anyone has been in this situation, maybe you can help shed light on it for me. My celiac blood test was a weak positive (8). I had a colonoscopy and endoscopy last Friday. Afterward, the dr. came in and told me she found "Duodenal erosion and scalloped mucosa in the duodenum" and was 99% sure the biopsy would reveal celiac. I had my follow-up appt. today. The biopsy was inconclusive. She said the next step was genetic testing. As I have celiac in my family, chances are the genetic test will be positive and still not tell me anything. Any words of advice or wisdom? TIA!!