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Found 6 results

  1. Hi 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!
  2. Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count, Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet. Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok
  3. Hi celiac.com peeps! This is my first post on here — a quick question: based on my results below, should I be pursuing DGP IgA and IgG and EMA testing? I have been dealing with GI problems for the past 6 months. My physician suspects potential celiac based on all of my symptoms, and referred me to a GI specialist who immediately dismissed celiac, did a colonoscopy and biopsy, and then told me nothing was wrong/he ruled everything out, and prescribed me Question (cholestyramine) to bind bile as a band aid fix. That hasn't helped and I am in the process of seeking a new GI specialist. Last week my physician ordered a celiac panel (TTG IgA Antibody, Antiendmysial Ab IgA, and total IgA) and a tTG-IgG test, and I just received my results today. (Pasted below.) Component Standard Range Your Value Flag Antiendmysial Ab IgA Negative Negative TTG IgA Antibody 0 - 3 U/mL <2 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstr- ated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A (IgA) 91 - 414 mg/dL 83 L Component Standard Range Your Value Flag TRANSGLUTAMINASE IGG 0 - 5 U/mL <2 Negative 0 - 5 Weak Positive 6 - 9 Positive >9 Thank you for your help in advance! :-) Kyle EDIT: I am still eating gluten and have not yet tried an elimination diet.
  4. I just wanted some other opinions about some testing I have had done, about a year ago I had blood tests which showed low IgA but positive IgG for celiac, I then had a biopsy which was negative but I went on the gluten free diet anyways (after all testing was complete). About 6 months after going gluten free I had to follow up with a hematologist about the low IgA and elevated IgG. After 6 months gluten fee and follow up blood tests my IgG had returned to normal, but my IgA was still very low and he diagnosed me with IgA deficiency. I have been gluten free for about 8 months now and I feel amazing, much better than I have felt in years, no diarrhea, no headaches, I am significantly less fatigued, i used to nap every day and now I almost never need a nap, I am no longer losing weight and I have not had GERD since changing my diet, which was a weekly occurrence before. So basically the blood tests were positive for celiac, and from my understanding IgA deficiency is far more common in those with celiac than those without, and I have definitely responded well to the diet, the only thing that was negative was the biopsy. Is it possible that the Biopsy was a false negative? Has anyone here been diagnosed despite a negative biopsy, or is this just a gluten sensitivity? My gastro seems convinced it is not celiac and called it IBS and said that the IgA deficiency could be a root cause of food sensitivities. Thank you all for your input and advice!
  5. Ton of symptoms, asked to have blood tests run. Came back with my ttg AB, giA negative at 0.3, the range shown says (<7). Is this iga deficiency???
  6. I just got back my test results and this is what they said: Gliadin AB, Iga (GLIAD IGA) - 1 units (0-19 being negative) TISS TRANSGL IGA (TTG IGA) - 1 Units (0-19 being negative) IMMUNOGLOBULIN A - 19 mg/dl (68-378 being normal) So, while my immunoglobulin level is really low/deficient, are my other test levels low enough to assume that I'm still negative or does having 19 mg/dl of IgA mean that those two other tests are basically useless? I guess the logical part of my brain says that even with a low IgA level my scores would have been higher than 1 units. I'd greatly appreciate any input has regarding this. My GI doctor is very helpful and seems very current in his knowledge of Celiac testing, but I won't see him for a couple weeks and am slightly mentally tortured wondering if I can read anymore into this testing. I know that he wants me to get the IgG testing (I think that was what he called it). But I'm wondering if that is just a precaution or if these tests are invalid because of my being IgA deficient. Thanks in advance for any information you can share! Ryan
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