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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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Found 47 results

  1. Both examples were originally posted on another forum, where I discuss a topic of my initiated. 1. Are doctors able to perform a proper differential diagnosis?  An example about the incompetence of human brain would be medicine. Did you know that the average time that goes for diagnosing Sjogren's Syndrome (an autoimmune disease most often prevalent in middle aged women) is 7 years!? Those poor women suffer years with dry eyes, mouth, and tiredness, but because the symptoms are vague the patient often doesn't notice them, because she thinks they are normal (she has got used to them) and only goes to doctor when more severe symptoms begin. OK, this erroring is not that bad, because it can be really hard noticing a gradual change in sth that you see every day (in this case yourself). What's really frustrating though, is when you go to your GP, mention her your "dry eyes", "dry mouth" and "constant fatigue", and then the GP says you have depression. Her mind is biased toward picking one symptom (fatigue) which's some causes she can remember, and chooses the most common of them. Probably she'll do the basic blood test to exclude the other causes she can recall, and of course they all come back negative, because she didn't add "ANA" to the list. Or she did add it, and ANA comes back negative, and the doctor concludes the patient doesn't have Sjogren's Syndrome. Wrong! Statistically only 2/3 of Sjogren's patients have positive ANA. What she should do is refer the patient to rheumatologist, who would perform the tear measure test. Now, I am not a doctor, neither a med student, but when adding those three symptoms in the symptom list of webmd.com, it gives you all possible causes, tests performed for confirming a hypothesised cause, and everything else I need to know. This would be an example of stupid computer database performing better than a doctor. I truelly can speak from my heart here, because I've experienced it over and over again. Doctors should admit the errors of their mind, and take an advantage from the existence of such web programs: start using them as your aid to perform a proper differential diagnosis! People suffer due to their constant errors.  2. Another example of the stupidity of doctors I just asked a web question from an endocrinologist. The purpose of this was to get an advice on my still undiagnosed disease. The question included all my symptom list and all the laboratory blood tests I have performed on myself within the last 12 months, which by now has piled itself up into a 3 page long Word document. Now, the tests show that I have 7/8 times high androgen hormone levels (testosterone, estradiol and SHBG), and 2/2 times elevated renin-angiotensin hormones (renin and aldosterone), which regulate the blood pressure by affecting blood potassium density. However, I did mention in my question that my blood pressure has always been okay, also (as I naturally had predicted) my potassium levels. Now, the doctor gave me an answer that was very academic and scientifically true in overall, which is a good thing. She said that 7/8 time elevated androgen levels definitely show a pattern, and for some reason something undeterminable (from simply seeing my test results) causes them to be elevated. However, they can't cause my symptoms. Which basing on the scientific research done in past is also true. She also noted that 2/2 consequently tested elevated renin-aldosterone is not enough to say it wouldn't be a random spike, caused by the combination of pre-existing genetic feature of mine + this feature reacting to environmental changes. If I waited, there is a handgraspable chance those two hormones would subside. Especially because my blood pressure and potassium are and have always been normal. Nor is there scientifically any relation between those two hormone groups (angiotensins and androgens). One being elevated can't cause the other jumping over the borderline. All correct. Statistically she would make a good doctor. But not in my case. What she didn't consider was the probability of {me having strong and long symptom list, lasting already for seven year} AND {me having two groups of elevated hormones} being/not-being related to each other. The probability of them not-being related would be near to zero. Thus, whatever science says about my test results, one would have to conclude that "I am statistically a rare case". Science is made by observing a large group of people, and conclusions usually made out of correlations, not from individual cases. Thus I say it is much more probable that I have a rare or cleverly-hidden disease, rather than "I am a healthy person who has nothing to worry about", which was the statement the doctor concluded her answer with. I will not let myself be affected by her judgement, and continue my search for the real answer.  ....... Hope these two posts give you courage to keep going. Always second guess what people tell you. 
  2. I know there are thousands of these topics out there, but I'm yet another confused and in pain patient seeking as much help and guidance as I can get from you kind folk.  My storyline is this (and I'll bullet point for ease) - 2012 living abroad in Nicaragua for last 5 years- begin feeling stomach pain, gas, severe diarrhea. Foods like broccoli, spinach, coffee, are major irritants.  - 2013 - Immigrate back to US - symptoms continue but increase in frequency - 2014 - crappy health insurance and can't get tested - 2015 April - Initial blood test = Celiac panel- my value 98 (std rng 0-19), TTG IGA- my value 74 (std rng 0-19), Gliadin Antibodies IGA - my value 9 (std rng 0-19) - 2015 Sept - Endoscopy - negative villi atrophy, Colonoscopy - without abnormality - 2015 Oct - Begin gluten free diet, 98% faithful. Diarrhea seems to lessen. Feeling of increased energy.  - 2015 Nov - Additional blood work and parasite tests ; Cryptoporidium and Giardia Antigens : Negative, TTG Ab IgA = 26 (std range = <20), Gliadin Deamidated IgG Ab = 29 (std range = <20) - 2015 Nov-Dec - attempt eating a whole wheat italian coldcut wrap for lunch to test theory. Immediate pain in stomach, and symptoms for 3 weeks.    So my questions are these:  How important is the diagnosis? Do these sound like celiac elements or simply gluten sensitivity or neither? How can the TTG have been so high without villi atrophy?  Is there something else I should test for or seek out? 
  3. Hi everyone,  I have been feeling pretty sick now for about 5 months. Finally my boyfriend made me go see a doctor, which I did. My first doctor did a full blood panel and tested me for h pylori - panel came back normal, negative for h pylori. She then referred me to a GI doctor who ordered a full celiac blood panel. Everything came back normal except for one test - he said the max was a 5, and I scored a 6. He didn't clarify which test it was, but from research I think it's the ttg-igg test?  He then scheduled me for an endoscopy and colonoscopy. He found inflammation only in the stomach - nonerosive gastritis - and this was the only area he biopsied.  I just got a call today from the doctor who said the biopsy results were normal, and told me to just take anti-acid pills for a few months then see how I feel.  He never addressed what this meant? So do I have or not have celiac? If I don't, I have already taken anti-acid pills, I don't want to live on them forever... I'm having a hard time accepting that just anti acid pills will make me feel better .. They help with the bloating and sensitive stomach (literally can't put any pressure on my belly) but not the nausea, night fevers, and vomiting.  Can someone pls help me make sense of my doctor's vague instructions/responses to my testing?    Thank you!   
  4. Hello! Friday afternoon I was given lab results by my endocrinologist 's office over the phone. Due to fatigue and numerous stomach problems for years (I was told IBS) and inability to lose weight I asked my endo to test me for celiac disease. I was scratching the numbers down on a post it so bear with me.... igA 80.3 igG 82.2 tissue transglutaminase igA sep AB 113.9 I was told all should be less than 20. I already have a call to my family dr.   to recommend a GI specialist. My questions are...has anyone else had numbers like this? Is it possible my hypothyroidism could be throwing off the numbers for a false positive for celiac disease? Thank you in advance for your comments!
  5. 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. 
  6. Hi all, I'm new to this forum.  Since a surgery in April 2013 I have had ongoing health issues which have led from one thing to another. I've had no specific diagnosis for anything going on which has left me feeling very helpless. I wont go into specifics in this post but I've basically ended up with extreme breathing difficulties and a neuropathic pain condition. There are countless other things going on but these are the two which have the biggest impact on my life. Should mention I'm 21 years old. Issues with my gut started getting worse around December 2013 when everything started to go downhill. I ended up on heavy pain meds which I assumed were the cause of my gut problems. I've now been off all meds since around July 2015 and my problems persist. Between this and my complete inability to put on / maintain any weight / muscle, I thought it might be worth looking into celiac so I had some bloods done.     Would be grateful if anyone could help me interpret the results... I am having a biopsy in a couple of weeks time.   Thank you.        
  7. I got some tests back after my sister was diagnosed celiac (she was most recent but quite a few of my family members are celiac). I'm going to do biopsy but haven't had that done yet. Could you please explain what these tests are for, what my results mean, and what the normal range is for each? I want to know how close any of my results are to borderline and how likely it is I have celiac or not.   gliadin Ab Iga - 98 units   tissue transglutaminaise > 100 units   gliadin abg (the doctor wrote this quickly for me and I don't see this acronym on other posts, could this be short for gliadin ab igg?) - 42 units.   EDIT: If anyone else has used life labs and know the reference range for any of these tests I would appreciate the information!
  8. My endocrinologist (I'm a type 1 diabetic) recently ran celiac tests on me, which came back 'positive for celiac'. What I'm curious about is if there is a range to how 'positive' one can be and with my values if there is a chance the biopsy (yet to be scheduled) will come back negative. I'm still eating gluten and my appt with the gastroenterologist is in about 2 weeks. AM i guarenteed to need the biopsy? What should I expect? Please express to me how important it is to not have even 'just a little' or anything like that. With the holidays coming and my pushy family, I need a reality check! My results are as follows:   ComponentStandard RangeYour ValueENDOMYSIAL ANTIBODY IGANegativePositive ComponentStandard RangeYour ValueDEAMIDATED GLIADIN ABS, IGA0 - 19 units89T-TRANSGLUTAMINASE (TTG) IGA0 - 3 U/mL67IMMUNOGLOBULIN A, QUANT, SERUM91 - 414 mg/dL298
  9. I have been battling with my symptoms for nearly 4 years. Gastric pain, cramps,rashes,nausea, and vomiting. You all know my pain. I had my gallbladder removed in 2013 and was diagnosed with fatty liver. I am only now 23 years old and I had my primary care completely shocked. I continued to live with symptoms that often sent me to seek emergency care. They continued to poke and prod me suggesting it was stress from college and being a mother.I simply decided that it wasn't worth the struggle I was going through as not a single doctor could solve my puzzles. Nearly 6 months ago my 4 year old son started displaying the symptoms that I had been trying to overcome for the past several years. It was then that I knew I needed some kind of diagnosis. I received a referral from an urgent care clinic, because my primary care physician wanted to continue treating me. I felt I needed to see a gastroenterologist, and he quickly scheduled me for an endoscopy. I got the result today, and luckily they DID NOT find cancer; however, they say it is difficult to exclude celiac. I just left from getting a celiac blood panels that they ordered. I don't know what is happening. Are they saying that it is likely that I have celiac disease?!
  10. Hi all, I'm new to this whole thing. Background is this: I had a major stress event a few months ago, major sleep deprivation. An on-again off-again rash that I thought I could control by avoiding dairy came on with a vengence. I felt like I became allergic to everything. My makeup, shampoo, who knows what. I'd wake up with a rash on my face, arms, elbows. Swollen eyes. My doctor had ordered food allergy and celiac panels. In waiting for results, I've done some research and reflection. Whenever I stress (and I'm normally a very healthy, active person), I have had trouble with rashes in the last 6-7 years (I assumed they were eczema, but when they were bad, they blistered. Mirrored. Sounds like DH to me now.) I've had periods where pasta or beer have put me into immediate stomach pain. But if I lay off it for a while, I seem to be fine again. I've also been hypothyroid for the last 2 years. Nearly always bloated, but rarely have any other sign of intestinal distress.   Results arrived today. I'm not sure what any of this means, other than the celiacs panel was negative, but  it seems there's a lot to consider with these results ... Do my food allergy panels with high levels for IgA and IgG with wheat, gluten, and gliaden mean anything? Not sure how to proceed.   tTG-IgA  2.82 (reference range  is >15=positive) Gliadin-A 3.42 (reference range is >15=positive) Gliadin-G  9.38 (reference range is >15=positive)   Food allergy Panel  High IgA for almost all dairy, including casein. Moderate IgG for all dairy (whey was high) Wheat gliadin: low IgA, high IgG Wheat gluten: moderate IgA, high IgG Rye: low IgA, high IgG Spelt: low IgA, high IgG Whole Wheat: moderate IgA, high IgG    
  11. Hello all!  I was just told 2 days ago that I "may" have celiac's disease.  Awesome.   My doctor just now put these labs into my online folder and I won't be able to talk w/her til next week, but am DYING to know what they mean!!  Can anyone help??  I'll be forever grateful!   Total Salivary SIgA    11 Normal Endomysial Antibody IgA  <2 Negative Gliadin Ab, SIgA (Saliva)    >32 Positive   What does all this mean??  Do I or don't I have to start shopping in the gluten-free sections?   If it matters, I was diagnosed w/Graves Disease in 2011, had RAI therapy on my thyroid in 2013, went hypothyroid, and after trying many things, am currently on Armour to treat my now hypo-thyroid.    I also have absolutely NONE of the celiac disease symptoms.  Never have.  I have always been able to eat anything I want and am really never sick.   Thank you for any wisdom you can shed so I don't have to wonder all weekend. --AmyM
  12.  My 13 yr old son has just been told the results of his biopsy were negative, his blood test results were negative, but he has low IAg, he is still suffering from weight loss, fatigue,nausea, constant burping, dry lips ,mouth ulcers, the list is endless. His gastro consultant noted smooth stomach wall with flattened villi when they performed biopsy, and felt this indicated celiacs, but after biopsy results he has discharged my son to a peadiatrician ,who thinks my son is suffering from chronic fatigue. Has anyone any advice because we are desperately trying to find a solution .Thanks
  13. I've been having a bunch of digestion problems and stomach pains that started around a year ago. I ignored it for a long while, convinced it was just in my head, but in November I gave in and went to get it checked out. They ran a bunch of tests, one of which was a celiac disease blood test that came back negative. I ended up getting sent to a GI doctor, where I had a colonoscopy on March 28th and was diagnosed with moderate Crohn's Disease. I started medication right away and have been on it ever since (Lialda, 2 pills twice a day). By May my stomach pain had gone way down and the pain I used to feel at least 4 times a day became very rare. My digestive issues (diarrhea multiple times a day and high urgency) also started dwindling, first the urgency went down and then the diarrhea got better. My doctor said my digestive system will never be completely "normal" so while my stools are still not completely normal, it's far off from the horrible diarrhea I suffered from. In order to make sure my doctor didn't miss any of the Crohn's since it can be anywhere in the digestive system and it had only been found in my large intestine, bottom of my small intestine, and anus so far, she scheduled me for an endoscopy at the beginning of June. After which she told me there was some mild inflammation, nothing very concerning, but they took a biopsy just to check. By this point I had been on my Lialda for a little over 2 months (and as I said above, was feeling much much better). Which is why I was completely shocked when a week later they called back to say my biopsy showed celiac disease. They ran another blood test on me which again came up negative, but since the biopsy is the gold standard for diagnosis, I was diagnosed anyway and ordered to begin a gluten-free diet, sent to a nutritionist, etc.   Yet as I read more about celiac disease, I can't help but feel that this isn't me. They said my biopsy "strongly showed" celiac disease, but that just means I had villous atrophy, right? Crohn's Disease can cause villous atrophy, and my blood test for celiac disease was negative. So who's to say that this isn't more Crohn's as opposed to celiac disease? I haven't felt any different on my gluten-free diet, and I will admit to having a gluten filled roll 2 days ago yet I've had no symptoms or reactions to it. My stomach and digestion remained normal, I didn't get fatigued or have any other strange symptoms. I was just wondering if anyone can give me advice on whether or not you believe I should talk to my doctor and investigate this more? It just all seems too strange for me, because cross contamination seems to make some very sick yet I had a full roll and was fine. I'm not completely sold on the biopsy diagnosing me since I am 100% certain I have Crohn's which I know can cause villous atrophy as well...thoughts?
  14. Hello,    I was recently tested for gluten intolerance. While I don't think I haven Celiac Disease, I received my results online via My Chart, but I haven't gotten the chance to speak with my doctor yet. Would anyone be willing to take a look at my results and let me know their thoughts? Thank you in advance.   
  15. Hi all,   As I mentioned in a thread a few weeks ago, I've recently started a gluten challenge after 3 years of very strict gluten free eating.    I've got a biopsy in 2 weeks time (after which I will have been eating gluten for 5 weeks and 2 days in total - I've been eating around 6 slices of bread per day or equivalent).   2 weeks into the gluten challenge I had blood tests done.   Deamidated Gliadin IgA        * 99  U/mL    ( <15 ) Deamidated Gliadin IgG          <1  U/mL    ( <15 ) Tissue Transglutaminase IgA     <1  U/mL    ( <15 ) Tissue Transglutaminase IgG     <1  U/mL    ( <15 )   My results from 2010 are as follows (following many years of low gluten, but not gluten free eating):   Gliadin IgA Abs               * 47  U/mL    ( 0 - 20 ) tTG IgA/IgG                   * 52  U/mL    ( 0 - 20 )   When I had a biopsy in 2010, there wasn't any sign of Villous atrophy.   I was wondering after my latest blood test if I might be going for a biopsy too soon?   I understand that the 99 U/mL result for Gliadin IgA suggests that there's something going on, but am I understanding correctly that the other results (the IgG and the tissue results) suggest that there's no sign of damage being done?   Again, whatever the result I will be going back to strict gluten free eating. I'm definitely intolerant to the stuff.    Thanks...!
  16. I've been reading here quite a bit while impatiently awaiting my Enterolab test results. A year and a half ago, I had a negative blood test and biopsy, but that was after 13 months gluten free with only an 8 day gluten challenge. Since I have a son who is gluten sensitive and I've had digestive issues since I was two months old, I was really interested in the Enterolab tests. I feel better on a gluten free diet, but I still have some inflammation and disgestive issues, and Enterolab seemed like a reliable way to at least be pointed in the right direction to start elimination diets. (Other than gluten -- I've been gluten-free since October 2011 other than my 8 day gluten challenge in November 2012. Gluten is absolutely not an option for me)!   Anyway, my results are below. Here are my questions:   1) The gene stuff is really confusing. Although I understand I don't have the celiac genes, I do have two gluten sensitivity genes. I just get confused by the "DQ8" , "DQ2", DQ1, terms I see on this forum. I know I don't have DQ2 or DQ8, but which DQ do I have? In the end, it probably doesn't matter, but I'd like to know so when I hear people talking about a DQ-whatever, I'll know "Oh that's me!"   2) Since I don't have DQ2 or DQ8 genes, I can't be celiac right? Because I have elevated Anti-TTG and some major malabsorbtion going on. I thought that those were celiac things. Especially the Anti-TTG which indicates auto-immune reaction. I had read previously that non-celiac gluten intolerance didn't produce auto-immune reactions, but celiac -- and only celiac -- does produce auto-immune reaction to gluten. I'm probably missing something.    In addition to gluten, I now have to change my diet to eliminate dairy and egg too. (And also walnut and oats, which I find amusing because I've eaten them maybe five times in my life. I hate them both! Not sure how I have been making antibodies to those).    Anyway, I'd be interested in any thoughts or answers to these questions. Thanks!   A-2) Gluten/Antigenic Food Sensitivity Stool/Gene Panel Fecal Anti-gliadin IgA      19 Units   (Normal Range is less than 10 Units) Fecal Anti-casein (cow’s milk) IgA      12 Units   (Normal Range is less than 10 Units) Fecal Anti-ovalbumin (chicken egg) IgA      10 Units   (Normal Range is less than 10 Units) Fecal Anti-soy IgA      7 Units   (Normal Range is less than 10 Units) HLA-DQB1 Molecular analysis, Allele 1      0303    HLA-DQB1 Molecular analysis, Allele 2      0603    Serologic equivalent: HLA-DQ   3,1  (Subtype 9,6) Anti-TissueTransglutaminase Antibody Fecal Anti-tissue Transglutaminase IgA      13 Units   (Normal Range is less than 10 Units) C-1) Antigenic Food Sensitivity Stool Panel Mean Value 11 Antigenic Foods      7 Units   (Normal Range is less than 10 Units)   Within each class of foods to which you displayed multiple reactions, the hierarchy of those reactions detected were as follows: Grains: Grain toward which you displayed the most immunologic reactivity: Oat Nuts: Nut toward which you displayed the most immunologic reactivity: Walnut Fat Malabsorption Stool Test (Fecal Fat) Quantitative Microscopic Fecal Fat Score      504 Units   (Normal Range is less than 300 Units)
  17. My wife has been feeling terrible all of 2014: bloating, loose bowels, floating, light coloured stools, general aching, abdominal cramping (especially LLQ), fatigue, loss of libido, feelings of depression and anxiety. Many symptoms started mid 2013, but they have gotten worse this year.   She had a blood test for celiac, and here are the results:   tTg-Iga Ab 5 tTg-IgG Ab 3 DGP-IgA Ab 162 DGP-IgG Ab 3   Result Range indication for tTG and DPG Negative < 20 Weak Positive 20-30 Moderate to Strong Positive >30   Test results: Positive   Feelings towards test results: :,(   My first question is: Could anything other than Celiac produce these results? How positive is the test (90%, 99%, 99.9%)?   She will have a GI appointment where they will do a biopsy in a month or so (date not confirmed yet). So far this week, she has been off gluten and it seems already she has noticed improvement. The GI's office wants her to keep eating gluten until the appointment (the receptionist said that it might be an allergy and not Celiac). What are your thoughts? Can she just start eating gluten again a week before the appointment if need be, or does she have to feel terrible for another month?   I'm sure she'll create her own account here soon, but I had a bit of time, so I thought I'd ask on her behalf. Thanks community.
  18. Hi,   I just returned from an appointment with my GI. She said I am negative for celiac, however, the copy of the test results I received said "supports a diagnosis of celiac." I am obviously confused. I went back to ask her why she said it was negative, and she didn't have time for me. Suffice to say, I won't be going back. But I do have these results and I'd like your opinion on how to interpret them.   Deamidated Gliadin Peptide Antibody - IgG - 43.0 EU Deamidated Giagin Peptide Antibody IgA - 9.3 EU Anti-hunman tissue transglutaminase igA - 75.0 EU Anti-endomysial igA IFA - positive total serum iGA by Nephelometry, total igA - 129   One ellele HLA DqA1*05 of Dq2.5 detected, HLA DQB81*02 not detected. Celiac risk haplotype not detected   I suspect because I do not test positive for the gene, she said I was negative for celiac? Any opinions? Would really appreciate any help!   For some reference, I blood test positive for a wheat allergy and I've been avoiding gluten for almost three weeks because I suspet celiac.   thank you!   Ami
  19. Hi!    I'm totally new here, in fact, I haven't even been diagnosed with having Celiac... yet. I went to the doctors and got a blood test yesterday, I think she ordered tests for my thyroid, something else, and Celiac.   My history could possibly explain everything... I hope nobody minds reading a wall of text! I could just really use some advice and guidance because I feel pretty hopeless about my situation right now.   So lets just start from the beginning. As a child I was always extremely healthy. Sometimes I would even fake sick so I could stay home from school because all my friends got to miss a day or two for being sick. The first real health issue I had was when I found out that I was severely allergic to tree nuts at age 11 (and more recently I've been diagnosed with a peanut allergy as well). Other than that my health was superb. I had always had keratosis pilaris on my arms.. and on my face when I was younger if that means anything..   At the end of freshman year of high school in 2011 my life was completely turned upside down. I contracted Mono during spring sports tryouts from sipping out of the wrong water bottle. It really hit me hard.. I probably had it for a month before I even got diagnosed.. I only went to the doctor once I collapsed. I was very very sick, sleeping nearly 24/7 and barely able to eat for probably three months. Though, it took me over a year and a half to actually make a recovery from all of it. During that time I had severe severe migraines on a daily basis, I would ALWAYS get sick, constantly, and I was also diagnosed with chronic fatigue syndrome during that time and had to go through physical therapy for it. After a lot of work and patience I regained a reasonable amount of health, but I was never what I was before having mono.   All of this time I had been out of school, trying to struggle through on online high school but sometimes I was even too sick to do that. When I would get sick I would feel sick to my stomach, get headaches, and just feel like I was in a fog, unable to think about anything let alone school. In the fall of 2012 I decided that I wanted to go back to high school. I made it through the first three weeks.. getting sick just about every week.. until I finally contracted viral meningitis and after that whole ordeal we just decided to pull me out of school all together and home school me. The migraines that has subsided started up again after having had viral meningitis. They were brutal, at one point I had one that lasted 11 days and I was hospitalized multiple times. I was put on Topamax after that whole ordeal AND had regular acupuncture. My migraines started to subside.. which made me feel better and in turn.. eat even healthier. I've always  been a vegetarian first of all... I ate better than most people bit not clean. Since I was feeling well I started eating clean, which also meant that I was eating a lot less bread, in addition I exercised daily. I was feeling great, no migraines, only the occasional stomach pains, no migraines. I was even able to stop taking the Topamax and my migraines stayed away.   So I've been pretty healthy up until this winter. Around christmas season I started to slack with how healthy I was eating and I haven't really gone back. I've been eating more bread and cheese than I normally would. Before I was eating a lot of veggies, quinoa, brown rice, beans, etc. I began having those sick days where my stomach would just hurt, I would be in a fog, and all I would want to do is lie around.    It all really went downhill four weeks ago when I injured my knee while skiing. As a homeschooler I have the freedom to be extremely athletic and would ski 3 to 5 times a week for 10 hour days sometimes. It was a freak accident that put me on crutches. I tore my lateral meniscus and I have a micro fracture on my tibial plateau if that's even relevant. Since I was sitting around and sort of bummed out I ate a lot more breaded products as opposed to healthy things. A few days after the injury I got a strange "virus" where my stomach started to gurgle a lot and I was burping like every 30 or even 15 seconds. I assumed it was a virus because it came on in a fairly short period of time.. but it hasn't gone away. It got a little better at one point but now it's gotten worse. I've also been getting migraines again, I've been in a brain fog, I've felt incredibly tired, and I just haven't been doing well.. and it's certainly not due to my knee.. which is doing a little better.. no crutches anymore. The keratosis has spread down to my forearms. I've been getting hives on occasion in random places for random reasons. I've been extremely bloated and uncomfortable.. but I've always bloated a lot after eating very little. The burping and stomach/intestine pain is ridiculous, I literally cannot stop burping. It's SORT of voluntary because I have to let the air out.. It's air.. or gas.. but it isn't acid.. at least not very much. Each morning I was getting up, eating some sort of bread product for breakfast in conjunction with some fruit or something.. then an hour later I would be knocked flat with a wave of tiredness and a brain fog and I would have to go back to bed.   I went to the doctor's yesterday and she felt my stomach.. there's nothing wrong with my gal bladder or anything. She took blood for thyroid, something else, and Celiac disease. She said that it would take 4 to 7 days for the results to show but she actually just called saying that the results were in.. but my mom didn't pick up the phone. She also scheduled me for a lactose breath test for next week.   Just some other things about me... I'm 17 years old, 5'2" and 105lbs. I've always been thin and small. I'm shorter than both my parents, though they're both pretty short to begin with. I won't be getting any taller.  I haven't been diagnosed with endometriosis but I'm pretty sure that I have it... my periods are awful and have always been extremely heavy and painful. Today was the worst I've ever had it, I literally screamed in pain for two hours.. and I wasn't being dramatic. I heard endometriosis is sometimes associated with Celiac. My hair has also been falling out A LOT lately. I've had extremely thick hair my whole life.. and it has thinned out considerably in the past few months. It isn't one spot.. it's just all over.  In addition to all of this I have about a zillion food allergies and I carry an epipen. I'm allergic to all nuts, oats, peaches, celery.. and probably other things that I haven't been tested for yet. It wouldn't be surprising to find that I have a problem with gluten too... and probably dairy in addition to that.  Nobody in my family has been diagnosed with Celiac (except for maybe one or two of my first cousins who have a lot of health issues but I don't know).. there are some family members that I suspect could possibly have it.. but there are no confirmed cases.   I almost want to be diagnosed with this.. not that it would make my life any easier.. it would actually suck a lot.. but it would at least be the answer to why I've been feeling this way for SO long. Two days ago I stopped eating gluten and less dairy... I've improved a little bit.. I've had ups and downs and I'm still burping and my stomach still hurts from everything that it has been through but it isn't as bad as it was the other day.       I apologize for the whole novel.. I would really appreciate it if I could get some answers. I'm just so frustrated and just want an answer.. Judging by what I've read.. this seems like this could be what has been causing all my ailments for the past couple years. Does this sound like Celiac or a gluten intolerance? Even though my doctor said that we wouldn't have the results for 4 to 7 days (she didn't say which test) and she just called in with them a second ago (a little over 24 hours after having my blood drawn)?
  20. Hi all....I'm desperate for any advice, suggestions and experiences which might help me solve my issues and diagnosis....a very wise bird (she knows who!) suggested posting to ask the advice of expert...you all...... So after several months of being desperately unwell.....main one being complete exhaustion...(couldn't move, function or think..,) and entirely unlike me as I work FT in a demanding and stressful job with a young family......I had some blood tests.... My bloods were all wrong. Low platelets, white cells etc..... Had more tests inc for celiac disease..... Thy came back off the scale for TTb IGa as over 300. But ema Iga negative. Sent for endoscopy. Endoscopist said def celiac disease with TTG IG off the scale like that. Back at docs last week as ESP unwell post endoscopy couple of days before....more bloods. Told today by receptionist B12 too low (161.......) and need it repeated and an appointment with doc. Doc tried to ring later but missed call. Receptionist said endoscopy was normal as asked result whilst on phone.(bit not disused or confirmed by Gp) So ...in short....help...where does that leave me....what should I ask for or expect next? Every single bit of research etc on online says with a TTG IGA like mine it must be celiac disease and I know an endoscopy will not always find damage (4 samples taken)..... Ives been gluten-free for 2 weeks now.,,,,the change is absurd.......(although took until this weekend...). I am starting to have a bit of colour, my eyes look less tired and black underneath...my head is clearing and I actually feel like working....not just sleeping.....(but still tired) BUT it's also made me realise that I've clearly had an upset tummy for as long as I can remember..... On reflection I've been going to the loo lots and not always good.....now that over the last few days ive hardly been at all and different and my tummy just feels still, settled and 'normal'....... Which worryingly makes me realise I'd forgotten what 'normal' was...... So...advice, next steps, help, experiences.....all welcomed.....as if my biopsy IS negative with a TTG IGA that high and also now b12 deficient,,,,,if NOT celiac disease....what else..!!? Thanks loads experts....,
  21. So, I received my diagnosis, yesterday. My endoscopy was clean both visually and from the pathology report. The only thing that was identified as being somewhat out of the ordinary is that my duodenum is inflamed. The inflammation is classified as mild to moderate. My GI diagnosed me as Non-Celiac Gluten Intolerant, possible IBS. He wants me to go see the surgeon who removed my gallbladder, in November 2011, to discuss the possibility that there might be scar tissue or adhesions in my abdomen causing my abdominal distress. This seems unlikely to me, but I will go. So, I'm not sure where I belong now or what I should be doing. I know it's time to go gluten free. Should I be doing that here? Should I be looking for a supportive IBS community? Maybe a Multiple Chemical Sensitivities community is more appropriate. Once again, I feel like a step-child. I feel a little lost and a lot overwhelmed. Your input would be really appreciated,
  22. Hello! Im very new to all of this and honestly feeling overwhelmed. Just received my results from Entrolab and was wondering if someone with more experience in all this wouldn't mind helping me analyze what exactly they mean. Any help/advice is very much appreciated! Here are my results: B-1) Gluten Sensitivity Stool Panel Fecal Anti-gliadin IgA 191 Units (Normal Range is less than 10 Units) Fecal Anti-tissue Transglutaminase IgA 59 Units (Normal Range is less than 10 Units) Quantitative Microscopic Fecal Fat Score 1048 Units (Normal Range is less than 300 Units) TEST INTERPRETATION(S): Interpretation of Fecal Anti-gliadin IgA: The level of intestinal anti-gliadin IgA antibody was elevated, indicative of active dietary gluten sensitivity. For optimal health; resolution or improvement of gluten-induced syndromes (mainly falling into six categories abbreviated as NAAAGS – neuropsychiatric, autoimmune, asthma, abdominal, glandular deficiencies/hyperactivity or skin diseases); resolution of symptoms known to be associated with gluten sensitivity (such as abdominal symptoms - pain, cramping, bloating, gas, diarrhea and/or constipation, chronic headaches, chronic sinus congestion, depression, arthritis, chronic skin problems/rashes, fibromyalgia, and/or chronic fatigue); and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well. For additional information on result interpretation, as well as educational information on the subject of gluten sensitivity, please see the "FAQ Result Interpretation," "FAQ Gluten/Food Sensitivity," and "Research & Education" links on our EnteroLab.com website. Interpretation of Fecal Anti-tissue Transglutaminase IgA: The level of intestinal anti-tissue transglutaminase IgA antibody was elevated, indicative of an autoimmune reaction to the human enzyme tissue transglutaminase. This is almost always due to clinically significant gluten sensitivity. In rare cases, anti-tissue transglutaminase antibody appears in the absence of clinically significant gluten sensitivity, either as a marker of latent gluten sensitivity, as a consequence of an autoimmune reaction to a different stimulus (either dietary or otherwise), or possibly from liver disease. Tissue transglutaminase is an intracellular enzyme present in virtually all human tissues and organs, and is secreted extracellularly in response to tissue damage (such as occurs with trauma, surgery, pregnancy, infections, or inflammation-induced tissue damage). It is this extracellular release that allows the enzyme to become antigenic, especially when underlying gluten sensitivity is present. The fact that dietary gluten sensitivity so often induces a subsequent and secondary autoimmune reaction to this important human enzyme explains why autoimmune reactions and diseases so often accompany clinically significant gluten sensitivity. Interpretation of Quantitative Microscopic Fecal Fat Score: A fecal fat score greater than or equal to 300 Units indicates that an abnormally high amount of dietary fat has passed undigested and/or unabsorbed into the stool. Malabsorption of dietary fat almost always is associated with malabsorption of all other nutrients as well (protein, carbohydrates, vitamins, etc.). When associated with gluten sensitivity, elevated fecal fat usually is due to gluten-induced small intestinal functional damage and subsequent malabsorption; this does not require there be villous atrophy present. However, deficient production of enzymes by the pancreas can also be associated with celiac disease or non-celiac gluten sensitivity with autoimmune attack on the pancreas, causing maldigestion and malabsorption of dietary fat and other nutrients. Some other causes of exocrine pancreatic insufficiency include chronic pancreatitis from any cause (alcoholism being the most common), pancreatic resection, pancreatic cancer, or common bile duct obstruction. Pancreatic insufficiency as the primary cause of fat malabsorption usually causes significant elevations of fecal fat values, usually into the moderate (600-1000 Units) or severe (>1000 Units) ranges. To distinguish between small intestinal malabsorption and pancreatic maldigestion, a fecal pancreatic elastase test is necessary, which is now available from our laboratory. Other possible causes of elevated fecal fat (steatorrhea) include - another inflammatory bowel disease (such as Crohn’s disease which can be associated with gluten sensitivity); deficiency in the production or secretion of bile salts; overgrowth of bacteria in the small intestine; diarrhea from any cause which can, in turn, cause dietary fat to rush through the intestine unabsorbed; consuming very large amounts of dietary fat; eating unabsorbable synthetic dietary fat substitutes; or taking “fat blockers;” and resection of the small intestine causing “short bowel syndrome” (if you have had an intestinal resection). Any elevated fecal fat value should be rechecked in one year after treatment to ensure that it does not persist, because chronic fat malabsorption is associated with osteoporosis and other nutritional deficiency syndromes.
  23.        Hello all its very nice to be a new member to the form. I’m excited to see your feedback since most of you are experienced with this disease. I wanted to seek your advice and views. I wanted to ask because two years ago I was tested for celiac and the transglutaminase, IgA test came back a moderate positive. The doctor told me to dismiss it because my Gliadin Igg & Iga came back negative. The only problem was two months before I saw him I cut back on gluten because all of the abdominal discomfort pain, and a lot of other symptoms.  Told me to go see an allergist because it was probably a food allergy, so I went and only Wheat came back on the skin prick test, but the allergist said he wasn’t sure because my skin was so reactive.        The last doctor I saw said that the transglutaminase IGA is a very accurate test and that all my symptoms match celiac disease: stomach pains, constipation & diaherra, fatigue, joint pain/stiffness, muscle aches cramps & spasms, tingling in my feet and hands, dental eroding (lost two teeth), blisters inside my mouth, dry skin, weight loss (168- now 149),  vit D deficiency in the past, and acne. Was a young active exercise guy never had any problems then all these issues began.       Now my doc has me eating a gluten diet so I can be retested when I see the Gi. The only problem was that these last two weeks were hell bathroom wise, and now I don’t get as sick when I eat gluten but my other symptoms have got worst such as mood (depression/anxiety) and joint pain. He says I need to be retested because the last three years I have been off gluten but cheating here and there because I was told to not to worry about celiac, but I was off enough to throw off my testing.      My question is, is it worth it to keep eating gluten to get tested again, or do I need to ignore the first doc and accept that I’m a celiac since of the transglutaminase IGA test? I mean I have been tested for every other imaginable disease or condition in the world, and all the doctors thought was that I’m crazy. 
  24. I have been tested twice in the past two and a half years for Celiac Disease - once when I first visited a GI and again after having a baby. Both times my test results came back inconclusive. I have been gluten-free 100% since this past test because it makes me feel so much better. I know that there is non-Celiac gluten intolerance, and maybe I fall into that category. But what if I do have Celiac and those rare times when I get glutened are really harming my body? My GI told me that there are 16 or so markers to test for but that they could only test for two. Is that true?
  25. Since I was little I would break out in severe eczema and for years we went to doctors and specialists who said the eczema would pass when I was a teenager. Unfortunately I'm 20 and I still break out severely. About three years ago I was rushed to emergency at lunchtime because I was crippled with pain, the emergency room doctor asked what I had for lunch and when I replied "All I've had is a roll" he suggested that I may be allergic to gluten.  This isn't the first time I've felt these pain, mostly at home or they haven't been as severe but it's been happening for years and most doctors thought I was faking it to get out of school. We went to a doctor who assured my mother and I she would get to the bottom of this problem, that she would make sure she found out what was causing me so much pain. She had me go for a genetic blood test but when it came back negative she said "You know Claire, you can't fake these kind of things. You have to go to school.", and I wanted to cry on the ground. I couldn't believe how easily she gave up and thought I was faking this pain. My mother who was furious dragged me to several doctors who practically said the same thing. I confided in my history teacher how distressed I was, he was a celiac, who told me that the genetic test can come up negative.  Mum dragged me to a specialist who said that the only way I can truly be sure is if I get an endoscopy which I was all for until he told me I had to eat gluten for 6 weeks. I'll note here that between being told I was probably allergic to gluten and finally going to the specialist I had cut all gluten from my diet for around 4 months and I was no longer breaking out in eczema or having such bad pains all the time. The thought of eating gluten for 6 weeks makes me cry, it's absolutely terrifying and a lot of my friends don't understand the pain I feel after eating even a regular cracker or taking a bite from bread. I was in my last year of High School and I couldn't be suffering so badly when I needed to study. The second I left I got a job in the city and I've been working my butt off for a year and a half. 've finally left the job due to a downfall in management and I'm feeling like maybe I should get the endoscopy as my intolerance is worse. I break out from using makeup or dishwashing liquid with gluten in it. Because it doesn't say I'm a celiac in my files, a lot of doctors don't take me seriously and prescribe me medication which I've been glutened from even after I told them I'm allergic. I also have no clue if my insides are healthy. I really need advice here, I'm so scared about what I should do. Plus I need to look for a new job but I'm currently a giant ball of eczema because mum made scones and I accidentally inhaled some regular flour.   I'm sorry this was so long but I'm terrified and would really appreciate some advice.