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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store.

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  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, 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. 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!   
  3. Hello, I recently tested positive for Celiacs disease via the blood test  and currently have a biopsy scheduled in January. I have been having progressive stomach issues for the past year and I am currently at the point where eating anything hurts and cause massive stomach pain and other digestion issues.  I already eat mostly Gluten Free because my wife has Celiacs, so when my blood test came back it was just above the normal high range (few points into the positive). Since I don't eat gluten that much at all already I can see how having a slightly above average result would still be accurate for a positive confirmation in a blood test (Since normally you would have way higher results when eating gluten all the time).  Since my initial diagnosis I have stopped eating Gluten entirely and still have having stomach pain. While I believe the biopsy will still reveal useful information I am conflicted with the pre-eating instructions.  My current issue is I have 3 doctors that all have told me different things about how to prepare for my biopsy. 1 - Has no idea about celiacs diagnoses and one day tells me to eat it and the next tells me to not.  2 - Says I don't have to eat Gluten and my biopsy result will still be accurate.  3 - Tells me that I need to eat lots of gluten for my biopsy to be accurate.  What should I do so that I have an accurate test result but also not cause any more potential damage if I do infact have advanced Celiacs disease/stomach damage? Has anyone else been told conflicting information about eating gluten products before biopsy?    Thanks in advance!
  4. My son had blood work done Cyrex Labs. The array 3 & 4.  I didn't start having him eat grain foods until around noon the day before the test. They took his blood around 11:30 am the next day. My son felt his usual gelatinized symptoms but not as extreme as usual.  By that night though he was full on sick and took over a week to fully recover. I'm worried that he did not eat enough and long enough before the test for it to give accurate results. Does anyone have any experience or feed back for us. We are still waiting for the results.  
  5. Hi. i have a simple question. I'm not sure if i have the celiac disease, at the moment (next date with the doc in a few weeks) Well, i have a blood test in 2 days and right now i'm in a non-gluten diet (Only eight or nine days with this...and not very strict, A few misses here and there) Can this have some severe effect in the results of the test? Thanks. sorry if this is too basic, kind of a new world to me.
  6. 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
  7. I absolutely adore my gastroenterologist. He is very dedicated to my well being. Unfortunately,I feel that at nearly every appointment that we have he always ends on the note of the possibility of lymphoma. He has a lot of diagnostic appointments for blood work and some barium imaging studies that he has me scheduled for over the next few months that are primarily to r/o cancer. Is this a common fear among celiac patients or should I be concerned? (I am already concerned actually I am just trying to see if this is common practice) Thanks Kortney
  8. IMPORTANT: I trust my doctor, I am willing to answer questions, but I want you all to know that where I am in the process of getting a diagnosis requires me to have an endoscopy- a positive blood test in my situation does NOT give me all of the information the doctors need. With that being said, here's my story...   This past Friday was the end of my eight week gluten challenge, a blood test, and another day in the land of waiting around for a specific diagnosis.    I am here to tell you that I am sick and tired of feeling sick and tired, but only one biopsy was taken at my endoscopy in the summer, so I get to repeat the process of another endoscopy on February 19th, 2015. However, there are a couple pieces of GOOD NEWS that I want to share with all of you.   1. I got my blood test results today and there is no question about it- I tested positive just like before. Why is this good news, might you ask? I was told that if the test wasn't positive "enough", I'd have to keep eating gluten until I returned to being positive so that I could have my endoscopy. Before, I had been five months gluten free, so the last eight weeks were awful physically, emotionally, mentally, and even socially. So I'm so happy to be headed towards an actual label of a diagnosis that I can DO something with to feel better.   2. I did NOT end up in the Emergency Room YAYYY  . ( There were several panic attacks, many bouts of stomach pain/problems, and my depression/anxiety skyrocketed during the eight weeks, fatigue was over the top, and this will continue to be the way it is until after the endoscopy because I MUST eat gluten to get an accurate biopsy/sample, but I'm just SOOO happy to have made it this far! ) 3. I am my own advocate for my health. It was April of 2013 that things first went haywire, but I will not give in or give up until I feel better and get a diagnosis!   Thank you for reading. Feel free to comment here or instant message me if you do not feel comfortable with posting to the public forum. I invite anyone and everyone to ask questions, partially because I enthusiastic about helping others in any way I can, but also because I need to pass the time until my endoscopy    Good luck to everyone on their own individual journeys~ Val  
  9. Hi all, I'm just starting the process of testing for celiac disease but recently switched jobs after I got the initial blood test and no longer have insurance to follow up with the results. My doctors won't even entertain a call from me to inquire. Can anyone help me understand my results and what I should do in the next three months before my new insurance kicks in? And there after?    Celiac disease panel: Range 0-19 my value = 98(*)   Tissue Transglutaminase IGA : Range 0-19 my value = 74(*)   Gliadin Antibodies IGA: Range 0-19 my value = 9       Any insight would be greatly appreciated =)   
  10. Hi all. I was hoping you could help me decipher my lab results. I got tested for celiac (because of long-standing symptoms which I will post about separately) and the results were negative BUT the thing is I was on a gluten-free diet (to my knowledge):     Deamidated Gliadin Peptide Ab IgG 0.5 EU/mL (0.0 - 4.9)   Deamidated Gliadin Peptide Ab IgA 0.5 EU/mL (0.0 - 6.1)   TTG IgA 0.2 U/mL (0.0 - 10.3)   Anti-Endomysial IgA Negative (Negative - )   IgA 219 mg/dL (44 - 441)   I guess my doc ordered it because I had experienced a week of really bad indigestion/heartburn, so maybe she thought I wasn't completely gluten-free.    Does anyone know any details on these results? Like if the levels gear towards or away from Celiac? My numbers seem extremely low, suggesting that I am far from gluten-intolerant. Even if I thought I was gluten-free but eating traces of gluten, is it possible to get these results? Similarly, is it possible I was gluten-free but for some reason still got the indigestion/heartburn symptoms and thus the test was not accurate?    What should be my next step? She told me to start eating gluten again if I wanted to do an endoscopy. Since starting on gluten, my mouth sores are back, I am as gassy as ever, and I am tired. Should I go ahead and do the endoscopy? How expensive would that be? I feel like giving the gluten-free thing another shot because I was feeling better before my indigestion experience. Any advice is greatly appreciated!
  11. 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.  
  12. 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    
  13. I have not been diagnosed with celiac (at least, not yet), but I am trying to figure out what my problem is. For a couple of years or more, I cough and have to clear my throat a lot after eating and again in the morning when I get up. Not every single meal, but many. I tried eliminating certain foods, and it seems that it is worse after eating anything with wheat. I went in for allergy testing and everything was negative. The doctor is going to do a celiac panel to rule that out. I don't have the intestinal discomfort or any of that. Mostly just the mucus issue. Does anyone else have that problem? The only other thing I have wondered about that I have trouble describing is a weird feeling I get in my stomach sometimes, mainly at night. It comes and goes, but it feels kind of like when you get startled or scared but there is no feeling of fear or anxiety with it. Just the physical part of it. Sometimes it happens when I roll over in bed. It's so hard to describe. It isn't pain.   I took myself off wheat for a few days and didn't have much coughing or mucus during that time. However, I was told to put the gluten back in my diet for the test. I immediately started reacting again. Since I was only off wheat for about 3 days, how long do I have to keep eating the gluten before having the blood test?
  14. Hello everyone.   I have just started the gluten challenge for a biopsy. I have been eating gluten on and off for several months, but prior to that I went gluten free (at least most of the time) for a couple of years after discovering that gluten/wheat is the cause of my lifelong eczema/dermatitis. At that time I had a blood test which was negative for celiac, but positive for the HLA DQ2 gene. I was not on the gluten challenge at the time, but I wasn't entirely gluten free either. As well as eczema, I have been bloated with IBS issues since my early teens and have had numerous neurological issues, chronic pain and vitamin/mineral deficiencies.   My question is: do you need to be on the gluten challenge for the blood test to be accurate? I understand that not eating gluten at all will affect the result, but do you need to eat the required level of gluten on the gluten challenge for the blood test? Or is that just for the biopsy? I have been eating some amount of gluten almost daily for a couple of months, and I feel horrible with much worse gastrointestinal symptoms than I have ever had, which is why I felt that I might as well keep it going and get a biopsy so I can stop guessing. Can I get a blood test now, or do I need to be on the gluten challenge for longer?   Thanks for your time
  15. Hello,   My 11-year-old is a slient celiac.   She suffers no symptoms from gluten.   We have been on a strict Gluten Free diet for about 9 months, and our last lab test still showed a high TTG number.   It was above 100.   We wanted to test a few food items that she likes to eat for gluten.   We think they are gluten free, but they aren't labeled as gluten-free.   We also want to test some of her favorite restaurant dishes that are supposed to be gluten free.      I googled and found a few gluten test kits.  They all promise the same thing, and I am a bit confused. Anyone have tried any test kits that you can recommend?   Thanks!
  16. Hi All, I've been gluten free for over two years after being diagnosed with celiac.  In the past few months I have started having increasing discomfort and bloating, which had initially stopped after going gluten free.  My doctor redid the celiac panel and confirmed that I have not been getting into gluten, but I don't know what my next step should be.     I suspect possibly additional food intolerances, but there are so many different foods that I don't know where to begin.  Is there any test that would tell me what foods I might be intolerant to? I've heard of an elisa test but don't know if it's reliable.     Or should I forget testing and remove almost all foods, then introduce things one at a time?  If so, what would be the best foods to keep since I have to eat SOMETHING. (I also have osteoporosis, so plenty of calcium is a necessity.)  Thanks so much for your wisdom!! :-)
  17. I heard about celiac and I read some of the symptoms which really got me worried then I stopped having gluten for 2 days. I know evil bad. Slap myself on the wrist. So today I started eating it again and I wonder if the finger prick test will be accurate now. Do you think 2 days is fine. The test should still work? Also how accurate is it? I don't have money for a full blood test so if this comes out a strong positive, is that enough to assume I'm celiac?
  18. Hi, Ok. So one month ago I was diagnosed Celiac after having severe pain in my abdomen for the last month and many other symptoms. They did an endoscopy and a biopsy and the biopsy came back positive for Celiac. So I was told to go Gluten Free and the last month I have slowly felt better. I assumed I was properly diagnosed and started my life changing diet.  2 weeks ago they had me go in for blood work and both my serology test and genetic test came back negative for Celiac. The nurse who called me about me results said I don't have any aversion to gluten. She was not a kind lady and was very angry at me for asking her so many questions she could not answer. She had to talk to the Dr. 3 different times and call me back. I knew the serology test was done incorrectly and told her so. I feel like my Dr. just gave me a giant run around and don't even want to go back and see him...    So how do I have a positive biopsy and negative genetic test? I know the serology was done incorrectly, as I had been gluten-free for over 3 weeks prior to the blood work... but if the genetic test came back negaitve... is it not possible that I could be Celiac?   Do either of those tests actual test for gluten sensitivity? Or just for Celiac?   Please any advise or any experiences you have could really help me at this point... Thank you so much!!!
  19. Good Afternoon Board,   First and foremost thank you in advance to anyone that can help out here. I have just started poking around the internet to interpret some lab test results (my doctor contacted me and said I was gluten intolerant), but I would like to do my due diligence and research to interpret some lab results.   To give you a bit of background about myslef, I am a 29/M in good health- and haven't experienced any symptons I can really point out as gluten intolerant ( to the best of my knowledge). My girlfriend* has suggested that I look into root causes of my ADHD, and thus the journey of determining if diet may be one issue. Hence the reason for my celiac panel.   At any rate, if anyone can help me interpret the below results, any help would be greatly appreciated.   Thank you,
  20. Does anyone have personal insight on this?  Every time my stools are completely solid, yet are very wet and can sometimes smear.  I freaked thinking it was a pancreas disorder but the doctor says calm down, your fecal fat test shows completely normal.   Anyone here do a fecal fat test which didn't solve much of anything?
  21. Hi All, I am new to the forum.  I have 2 children with GI issues and I myself have had IBS type symptoms most my life.   We've had blood work celiac panels run on both of my children and told they were negative with no need for genetic testing.  My dd also had an endoscopy done at Mayo Clinic in Rochester and from all those results, I see they did not do any separate biopsies for celiac.  When I talked to the nurse about it later because dd was still having symptoms, I was told that since there was no sign of inflammation or damage, they did not need to do the biospies for celiac.   Not sure what I think about that.  My gut tells me they can not see that well to know for sure, but wanted the groups advice on all of this.     OK, so my dd's GI history is MSPI as a baby, then reflux and regurgitation of foods possibly related to histamine intolerances, and also possible fructose malabsorption. She's also has constipation issues since she was a baby.   Recently diagnosed with SIBO at age 8 but since the methane gasses were higher toward the end of the breath test, doc thought it was being caused by her constipation.    Her vitamin B-12 was over 1500.   No exact number was given, just over 1500.     DD has aversion to almost all fruits and veggies.   She'll eat strawberries, green beans, some lettuce and cooked carrots.   Sometimes some applesauce or fresh apples but we are pealing the skins to make easier to digest. .  She also has texture issues but is very smart, top of her class.   Was not growing at one time around age 2, but now is growing and gaining weight but on the lower end of the curve for her age but looks healthy.    So  here are my dd's blood test results.  She was almost 7 years at the time.   Immunoglobulin A Serum =101  ( range is 33-200); Gliadin Peptide Antibody, IgA  = 2  (range 0-19); tTG Antibody, IgA  =4  (range 0-19).      Also, my son's Celiac results were almost identical to my daughters and the same testing panel was done on him.   Both tests were completed by ARUP labs out of Salt Lake City, UT.          Any advise on these test results would be appreciated.   Specific questions being do you all think ARUP's panel is complete or a good one.  Do those blood test results look questionable at all for possible celiac disease or do they looked strongly negative.   Just trying to put this to rest as FP doc keeps telling us to avoid the wheat, but don't want to take her off it, if more testing should be completed.      
  22. 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?
  23. While I was sitting in my doc's office this morning, I read a magazine article about a new celiac blood test being developed that only requires a three-day gluten challenge.   I'm sure someone has already posted something about this (although I only had a moment, and my quick site search didn't turn it up), but here's some info I found by googling it:
  24. Hi Recently I ate something that apparently had a small amount of gluten. My symptoms aren't that strong, so I can't be sure. A. Does this  reverse my body to stage A? How can I heal my body? B. I needed to do a blood test to check my celiac levels and another biopsy. Do you think that a small amount of gluten will show up in the test? If yes, when do you think I can do the tests? Thanks
  25. Hi there, I am posting on behalf of my husband.  I have some questions and need some help from you guys, please & Thank you!! I want to be detailed, but I also don't want to go on and on and on.     Husband was basically born with Ulcerative Colitis, when he was in his late 20's they decided to remove his colon and give him an intestinal pouch (weird, right? called a J-Pouch).   He had a endoscope done a couple years after the surgery and they found that his Villi were flat. They told him to eat Gluten-Free for 3 months to see if his villi would rise again, and if they did rise, the doctor said that would mean that Gluten caused the flatness, therefore my husband would have Celiac's...   He ate gluten free (he was completely miserable) and he went back for the check up and they found that his villi were still flat. Because of this, they said he had Celiacs.   My husband, being stubborn, decided that he wasn't going to eat gluten-free anymore. Just being stubborn, he told himself that this Celiac's thing isn't real and doesn't exist, though, I think he was just joking...   Anyways, my husband never had Any stomach issues or any problems what-so-ever to make him think he had Celiacs, besides the flat villi.   Do to having an internal pouch (basically, his small intestine is now his colon....) he does go to the bathroom a lot and it's usually loose stools (TMI?) but all of this is expected from his J-Pouch, he never had stomach cramping or any other Celiac's symptoms... So he kept eating gluten, and we began to forget he was even "diagnosed" as having Celiac's.   Okay - fast forward like 8 years -   It's now June 2014, and in february 2014 my husband pointed out that he has a rash on his buttocks that's extremely itchy.  We thought, well, that's gross, but let's see if it goes away. Then a couple days later, he has bumps and a rash across his eye lids. We thought, well maybe he caught something weird, so we decided to go to the doctor.    The skin doctor tells him that he has a fungal infection on his rear end, and maybe a bacterial infection in his eye, and takes  a skin culture. That comes back negative for bacteria. So, my husband takes some medicated lotions and pills and we wait it out. Though, we are never satisfied with thinking that it's a fungal rash. We go back for check ups and now the doctor says it's Eczema and gives us more medication.    Weeks pass, and the rash is changing and spreading and finally, it almost 100% clears up.   I start googling pictures and I come across DH (the gluten rash) and we think it looks a like! Then we are reminded that my husband was once thought to have Celiacs! Maybe we found out what this is after all!   We have a final check up with the doctor and my husband asks him if this rash could be related to Celiacs, and the dermatologist laughs and says no, it's not. It's Ezcema! See! the medicine I gave you made you better therefore if it was DH, it wouldn't have cleared up.   We don't know what to believe. So at the beginning of April, when we thought the rash was all gone, we see it on his eyes again, and then his neck!, and his buttocks again, the back of his knees, his ear, his neck, his elbows, EVERYWHERE. It even spread to his cheeks and his scalp. My poor baby.   I basically made him start to eat gluten-free because we couldn't afford more doctor appointments. He's been gluten-free for about 3-4 weeks now and the rash is still itchy and still not going away!   We scheduled another appointment with a different Derm hoping they'll test his for DH.   my question is... Should he start eating Gluten again before this Dr appointment next week? How soon does he need to eat it again?   Also - does having flat villi be a symptom for something other than Celiac's? Could he be misdiagnosed for Celiacs if we find out this rash isn't gluten related?   His attitude has been so deflated over these past few months, and I just want him to get better. and he wants to eat Gluten so badly. I'm just tired of these doctor visits when they aren't listening to our experiences with his stomach and skin problems.   Any help?advice? anyone go through this?