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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. 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? 
  2. Hi everyone,  I am pretty new to my disease and have been gluten free for about 3 months. I am discovering how sensitive I am, and I am finally feeling more adjusted. I haven't been accidentally "glutened" for around a month, which is great, but last night I had an awful reaction to some See's Candy Bridge Mix. They are supposedly gluten free, and I even called to ask for the ingredients, and they are indeed gluten- free. Obviously there is a lot of chocolate involved, milk, cream, corn syrup, molasses, egg, some soy, however none of these ingredients I have reacted to before. I used to get very bloated with dairy, but that has passed now that I have developed celiac. Do you think this could be a sign of cross sensitivity? Have any of you had a horrible gluten like reaction to a food that contained no gluten? I am feeling a little discouraged, because I was doing so well. Maybe its the corn syrup or corn starch? so confused
  3. Hi, I recently was diagnosed as being gluten intolerant. I didn't go through with the biopsy to confirm as having Celiac Disease and the ttg-IgA test came up negative as well. Due to having classic neurological and digestive issues associated to gluten and being suggested by a doctor, I decided to go off gluten and began to see a massive difference. One of my major issues were terrible fatigue, an oversleeping problem were my cycle would 'magically' shift to morning hours disrupting daily activities. Apart from these, I have constant nausea, joint pain, nerve pain tending mostly to the right side of my body, severe memory and thinking problems ( brain fog - this has not improved yet being on a gluten free diet for about 2 months now) , anxiety attacks and chronic mild migraine headache. Exactly 2 weeks ago, I glutened myself accidently and within 2 days all my health concerns came back full swing.   I want to know whether it takes this long for the symptoms to reside and whether there is any treatment available for the sleep condition as it severely affects my daily life and my career.  My sister who is 14 ( I am 22 ) has similar issues and her doctor just diagnosed her with fibromyalgia. Could I be having fibromyalgia too induced by gluten..or could this be Non-celiac gluten sensitivity?  Is there a solidified connection between the two?     
  4. Hi hi, I guess the only way to find this out is to test it but I'm curious as to whether sensitivity (which I understand varies for different people) has a genetic component as well as the actual disease. My grandmother gets sick from glucose syrup and other things Australia lawfully deems safe and I haven't tried it yet as not willing to get sick again yet... But on this forum I've learned that the majority of people are fine with it. Which made me you have relatives with Coeliac disease and have you inherited 'their's or your own body's version ?
  5. Reading this article and taking a closer look at this research feels like we're moving years backward.   Anyone know of any research that contradicts this or at least weakens it?  
  6. Hi there...I've been gluten free since my biopsy so about 10 months...still having random neckrash and hives on my eyelids and recently was tested for food allergies.  The IgE results were all negative but the IgG came back positive for casein, wheat, corn, beef, apples, banana's, potatoes and tomatoes.  It only tested 10 different things (ok for chicken and soy)...I've been trying to find information on this while waiting to see a nutritionist but my dr just said for now stay away from the highest offenders...the levels were supposed to be under 2.0 and corn was 11, bananas 9, beef 7.4, casein 5.5 etc..while tomatoes were 2.5 and potatoes were 2.0 which they marked as high... I was told at my endoscopy 10 months ago that I had a lot of visual inflammation of the esophagus, stomach and intestines and the results were celiac disease gerd and inflammation of stomach.... Many places I read that if you had low positives to ignore those and I'm thinking no I should notice all positives....?? and I can't find any reference to what is considered "low positive" the 11 a low positive that I had for the corn or is it like a WHOA off the charts....I can't even find a reference for it...Any insight anyone???
  7. Hello everyone,    I was diagnosed in early January and adopted a 100% gluten free diet, as well as trying to eat primarily whole foods. I felt pretty much completely better and my main symptom, persistent nauseation, was alleviated. I was doing very well for several weeks, when I consumed a large amount of black rice and had diarrhea for about a week (featuring undigested black rice - ew).   Since then, I have had increasingly intense symptoms, and a wider variety of symptoms than I was suffering pre diagnosis. I usually experience a few days where I feel almost back to normal, and then I will feel terrible as though I have been glutened for many days. I have extreme lower abdominal pain that lasts 2 - 3 minutes (worst pain I have ever experienced, I double over and want to cry out), fatigue, I feel nauseated, indigestion, passing partially digested food, diarrhea, burning in the stomach, anxiety (and anxiety driven nightmares), and heartburn.    Has anyone else experienced this? What should I try? I am considering attempting to cut out fibre, or trying the SCD diet.   Any advice or support would be very, very appreciated. I am beginning to feel very discouraged   Isabella
  8. HI there, emerging lurker here   Just feeling so discouraged by the ongoing nature of my symptoms but no specific diagnosis.  I feel like I can't eat anything, otherwise I have some kind of weird reaction.  This causes me to feel anxious about going out to restaurants or out to friends houses.  I really feel a little crazy with all of this.  GP diagnosis Adverse food reaction (non anaphylactic), IBSD.  GI placed me on FODMAP diet.  Heart doctor wants me to do tests, Allergy doctor says there are no tests for gluten sensitivity.  I do feel dismissed and made to look psychosomatic, yet the rashes are very visible.  I believe the different doctor's specificities makes it difficult to see the big picture, and if there is no test, then it doesn't really exist.     I am wondering if any of my symptoms sounds like Celiac to you? I tested negative for wheat allergy, so does that mean I don't have Celiac?  I read about Celiac, and I don't have many of the dreaded effects that go with the disease.  I am pretty allergic to mold, somewhat to cats, pollen and dust mites.  Have had the food allergy panel, no allergy was detected. Had CT scan for, sinus with infextion, so on long course of clarithromyacin (ohh my poor gut   Ongoing: Asthma, IBS-D, cramps, bloating, brain fog, hair loss, eczema, psoriasis, headaches. Chronic sinusitis,  difficulty with sleeping, swelling around eyes in morning, white discharge from eyes, dizziness when i put my head back or look left, sometimes feeling of disequilibrium when walking, occasioinal memory off or trouble finding words, tired and anxious   After I eat something: Lungs fill with fluid and can't breath (like I could choke on the mucus), itchy face/ears, major bloating, cramping, IBSD, strange feelings in my heart--having to cough to relieve it, the feeling of coursing/pounding heart beat, brain fog, dizziness.   Weird things happened with no known cause: "ID" reactions, 3x, head to toe extremely itchy bumps needing prednisone/steroids/light treatments to resolve External Absorption (molar)--teeth cells change back into gum resulting in tooth loss. Reaction starting with itchy bumps on hands then becoming flushed red, hot rash on backs of elbows, above knees, back of wrists, chest, face and ears (this resolved with benadryl) On the FODMAP diet which is gluten/dairy free for 3 months.  Yet had a lasagna, and within 2 days #3 above, happened.  Which made me think of gluten sensitivity.  Urgent care doctor said was an allergic reaction because the benadryl seemed to have reduced the swelling and rash began to fade.   Anyway, that is all I can think of at the moment.  I am sorry to write so much.  I usually NEVER right on any  boards, online sites, but I just feel so discouraged, so thought I would reach out to a community who live with similar issues.  Thank you for reading this.  Any response is greatly appreciated.   Best, Andrea  
  9. So I think I have a gluten intolerance/sensitivity. I say I think because I have not seen a doctor about it yet, and I only noticed that something was wrong with my body about two weeks ago. Everybody knows how their body feels and works and mine all of a sudden just was not behaving normally. Let me preface this by stating all my existing conditions/problems: 20 year old female, lactose intolerant (have been for about a year now), on daily medications for ADHD, anxiety/depression, and birth control. I've just moved back to college for my last year of school, and I'm mourning the recent loss of my father.   Now about the gluten problem. I just noticed new signs about two weeks ago when I would be eating lunch at work. Usually I had a sandwich (white or wheat), sometimes it was pasta. Almost immediately after I began eating, my stomach would develop a sour feeling - no other way to describe it other than an achey, upset, crampy, bloated feeling in my lower abdomen. The urge to go to the bathroom (though it was not always necessary), gassier than I've ever been in my life, I'd feel very drowsy and slow, and randomly my joints started hurting (knees, hips and ankles). At first I thought it might be excess stomach acid so I started taking Rolaids throughout the day and drank more water and had a snack in between breakfast and lunch. And the bad feelings would last so long I wouldn't have the appetite for dinner. I ruled out stomach acid, as I wasn't having heartburn or indigestion. In the mornings I usually have a bagel or two pieces of toast or something bready, since I don't have cereal anymore and never had time to make anything fancier than that. I've been eating bread my whole life so why all of a sudden does it bother me? But now I'm thinking that maybe I always had signs of it, but I was just treating those like they were the result of eating too much pizza or a big sandwich on a bagel and just thinking "oh my stomach just hurts because it's full".    So I decided to try avoiding gluten for a period to see if I felt any better. During this time I moved back to school, and moved into a new apartment with my boyfriend. I did some research about what kind of foods to get, but here in this small college town, your two grocery options are either Walmart or Giant (and I'm on a tight college kid budget so I unfortunately chose Walmart). I thought I was pretty good about reading the labels and ingredients of things, but I wasn't as good as I thought because I still came back with bad stuff. And later after shopping for hours I was so hungry and slipped and got Chipotle (a big tortilla quesadilla to be exact) and got soo sick from it. So I think it's definitely an intolerance or a sensitivity. Could any experienced people here give me some advice?    I'm also struggling on what to eat. I cut gluten out of my diet so abruptly, that I'm definitely experiencing withdrawal. I feel like a zombie. Always hungry, extremely low energy but not tired enough to sleep, unmotivated and frankly pretty depressed. Is this just what happens when someone makes a sudden change in diet? Will it go away? For lack of proper knowledge and optimal resources, all I've had to eat today was applesauce, a banana, some lemon yogurt, a small serving of brown rice and celery with cream cheese on them, and water. I'm sure my blood sugar is low, and I am depriving myself of the proper nutrients which is not what I want to do at all! I want to be happy, healthy and free of pain and discomfort.  Please help!!
  10. I know nothing about Celiac's. My blood test was 'quite positive' and I have been referred for an endoscopy, but I have no major symptoms and would prefer to go gluten-free instead. Thoughts?
  11. I've recently heard a couple of people with Celiac's disease state that you will become more sensitive to trace amounts of gluten the longer you have been on a gluten free diet.  Has that been proven by testing or is that just how "some people react"?   I was diagnosed 2 years ago and I try to maintain a gluten free diet.  I do react to severe glutenings but I am not overly sensitive to trace amounts of gluten.  Will I become more sensitive to trace amounts of gluten over time?   Redbeard52
  12. Okay, here's my story. Ever since the age of 7 I have been experiencing stomach pain after meals. In the last few years the stomach pains have been going away but I still have many symptoms such as headaches,skin rashes,dizziness and constipation. I went to the doctor for my problems and they told me to go off dairy and tested me for celiac among other things.The next day they called to say all my blood work was fine and that I don't have celiac ( I find this strange because doesn't the blood work take more than 1 day) Anyways so going off dairy helped a bit but I still have many symptoms. The reason I'm still thinking gluten is the culprit is because my mom also has many symptoms such as psoriasis,keratosis Polaris, fatigue and sleep apnea. I still live with my mom and she thinks that gluten sensitivity is a myth and won't let me go off of gluten to see if I have a sensitivity. Anyways so what should I do and is it possible I still have celiac or even a gluten sensitivity?
  13. I was diagnosed with IBS-constipation about 40 years ago. Last year, my bowels changed and I went from constipation to diarrhea. This May (2014) I underwent an endoscopy for celiac along with a 10-year re-check colonoscopy (my first one was normal except for evidence of IBS). The prep was agonizing for me and I've yet to feel healthy since those two procedures done in early May. Within a week after the procedures (and while being gluten-free), my bowels returned to constipation. I'm finding it extremely hard to find a good diet that is gluten-free while also having enough fiber in it to assist with the constipation. Is there anyone else who suffers with both of these situations? If so, what are you eating?   Any help is much appreciated!
  14. Hi everyone!   Three years ago, my daughter and I were diagnosed with celiac, went gluten free, and felt significantly better.    Now, I've got stomach issues again, and migraines.   The Mayo said it's anxiety and sleep problems. My chiropractor recommended the Whole 30 Elimination Diet. I'm on day 3.   Is this the best way to figure out why I started having stomach issues again? How did you figure out your food intolerances and sensitivities? Would love the group's help and wisdom. Thank you!
  15. I thought this part of the study was interesting. It brings to light how some people can go gluten-free except for their beer and they still feel better. I'd like to read more studies on Celiac vs NCGS. "Whereas celiac disease subjects should maintain a lifelong, strict GFD and limit their exposure to gluten to foods containing less than 20 parts per million (13,14,15) NCGS subjects can be more liberal and titrate their exposure to gluten as needed to avoid symptoms."
  16. Hi everyone--just joined the community    I've been on a strict gluten-free diet since October (my diagnosis), but I still have a huge bloated belly. It looks very strange on me because I have a small frame, and it makes me look like I'm about 7 months pregnant. I have also cut out oats, dairy (been vegan for 2 years), and most recently nuts. I already had probiotics in the Vega1 shake I drink each morning, but last week I also added a probiotic supplement as well. Does anyone have any advice on how to shrink down the gluten baby belly? Is it possible--(aka does it just take time)? It's just been 6 months since I've cut out gluten entirely, so I had hoped it would be gone by now.   Thank you all in advance 
  17. I'm new here, and happy to be reading all the posts.  I'm in the midst of a personal storm, both physical and emotional.  I lost my son four months ago... and that should explain all my symptoms, especially the emotional.  Except, my symptoms look more like celiac or gluten intolerance.  I should mention that I am a Type 1 (insulin dependent) Diabetic.   Briefly: 5 years ago I underwent a rapid weigh loss, and severe depression.  I was given an endoscopy, blood tests for gluten... all were negative.  Yet, the ONLY thing that helped me climb out of that mess and eventually regain my health and normal weight were eliminating gluten and dairy. (and eggs).  At that time, a stool test through Genova/Metametrix did show off-the-chart sensitivity to gliadin.  So, regardless of what the testing showed, I really stuck with the gluten-free diet.    I've been fine since then, except if I cheat much on the gluten... I can "feel" the old symptoms coming back. But since I didn't have "celiac", I never was 1000% gluten free.   Then in early January, I got a flu.  I was already emotionally distraught over my son.  And I do recall being more lax with avoiding gluten. (Went to several restaurants in Los Angeles on a trip, and wound up having a French Dip sandwich, some Chinese food with coated chicken, etc.)  Suddenly the weight loss and fatigue are back... 20 pounds in two months.  This time, huge abdominal issues, constant burping, constipation, nausea.  Everyone is alarmed... and the depression is also oppressive.   I just went back to a GI doc who did an MRI (looking for pancreatitis), and he also did the blood gluten testing, which was completely negative.  I do NOT have fat in my stools, so this apparently rules out most major problems (including gluten intolerance?)   The thing is, to prove that I am eating (and not simply depressed), I've kept a food journal.  I'm eating 2500 calories or more every day, including a ton of fat and oil.  WHERE does this food go, if not down the toilet, or digested onto my body?  I should be big as a house.  Any thoughts or advice would be SO appreciated!  I haven't been able to work or function now in a month.  Blessings~        
  18. Good morning everyone, My name is April and I was just diagnosed with celiac disease last Thursday! I was hoping to share my story and see if anyone else out there is like me and can offer me any "what to expect" advice. Thank you all in advance. In a nutshell these were the weird symptoms I was experiencing: 1. Unexplained weight gain despite diet and exercise 2. Bone pain that progressed (I was scared of cancer) 3. Inability to sleep through the night or feel rested 4. EXTREME fatigue, all the time, no matter how much rest I got or caffeine I consumed   Surprisingly I have absolutely NO GI symptoms when I ingest gluten. It never affected my GI tract which is why it took so long to track down I guess.      I have always been a very thin person until the past 2-3 years after my dad died suddenly (a lot of my family kicked the bucket in a matter of a year) and I started to gain weight presumably from stress. Of course I thought this was from depression so over the past year and a half I have spent my time feverishly working out (Insanity, P90X, Turbo Jam, personal trainer, kettle bells, you name it!) and actually gained weight and inches much to my chagrin. I went back and forth to my doctor whining about how I am getting fat (I gained 35 lbs in a year and a half despite proper diet and exercise) only to be told I am eating too much and told to cut my calories down to 1100 a day (yeah right)(I currently weigh 140 lbs am 5'0" and going to be 30 later this month yikes!!). So a friend referred me to a lovely holistic medicine doctor who did a plethora of tests on me (ironically that I had begged my normal practitioner to do which she refused) and found that I have celiac disease (homozygous for all 4 genes) and am SEVERELY malnourished. Functionally I am starving to death she said. There was barely a measurable trace of vitamin D in my blood (29 and low normal is 75), I only had slight traces of biotin and one other B vitamin that I can't remember, all the rest were MIA and the same went with my amino acids, out of 26 essential amino acids I only had traces of 3 in my body. Alas she told me this was due to malabsorption and the more I worked out the more my body stored fat as it thought I was starving and the increased calorie burn made my body freak out even more when I was working out 90 minutes a day. This made sense to me until I read that most celiacs actually can't gain weight which is the exact opposite of me.    I am interested to hear other experiences to know what I may expect and if I am "normal" so to say. I am excited to have answers but am still scared as I am still gaining a ton of weight although I don't eat much and am very active. Thank you!!
  19. Im non celiac gluten sensitivity person, but because of gluten my intestine gets inflammed, a non specific inflamation, i become lactose intolerant, my belly becames stiff, and I cant do any exercises, because if I do, I get abdominal muscle cramps immediately, but those cramps are only in the abdominal muscles. anyone like me?? 
  20. I was thrilled to come across a paper about non-celiac gluten sensitivity in children in the Journal of Pediatrics, one of the main pediatric journals. Many of my pediatrician colleagues read this journal on a regular basis. In this article, a group of Italian researchers has described the symptoms and lab test results in 15 children with gluten sensitivity (GS) compared to 15 children with active celiac disease and 15 controls (children with IBS-type symptoms that have no correlation with gluten intake). None of the children included in the GS group had an IgE-mediated wheat allergy causing symptoms. Most of the children in the study were between 8 and 10 years old. Here is a brief overview of the research study: The main symptoms in the gluten sensitive group included abdominal pain, chronic diarrhea, bloating, failure to thrive (poor growth), vomiting, and constipation. These symptoms were similar to those seen in the group of children with active celiac disease. The “control” group of children with functional (IBS-type symptoms) had only abdominal pain and indigestion as symptoms. The gluten sensitive children had “extraintestinal” symptoms of tiredness, headaches, and limb pains. Interestingly, these were not seen in children with active celiac disease. The celiac group of children had anemia and elevated liver function enzymes but the gluten sensitive children did not. Two thirds of the gluten sensitive children had abnormally high antigliadin IgG antibodies (this is an older antibody that was used in the past to assess for celiac disease, but is no longer used because it is non-specific for celiac disease). None of the gluten sensitive children had elevated celiac antibodies (TTG IgA and endomysial IgA). All of the children with active celiac disease had abnormally high TTG IgA and endomysial IgA levels and 13/15 with celiac disease had elevated antigliadin antibodies. The control group kiddos with functional abdominal pain were negative for all antibodies (antigliadin, TTG, and endomysial). Seven of the 15 children with GS had one of the celiac genes (DQ2/8) and 8 did not. The 8 gluten sensitive children who were DQ2/8 negative all had some combination of HLA DQ1, DQ5, and DQ7. Eleven of the 15 GS children had an intestinal biopsy while on a gluten-containing diet. All of those with GS had normal to mildly inflamed intestinal mucosa, corresponding to Marsh stage 0 to 1. In summary, the authors provide findings that support the existence of gluten sensitivity in children as a distinct problem from celiac disease. Children with gluten sensitivity have celiac-like symptoms that resolve on a gluten free diet and return when gluten is reintroduced. Although gluten sensitive children often have elevated antigliadin IgG levels, they have normal TTG IgA and endomysial IgA levels, at least in this study. Their small bowel biopsies show no evidence of villous blunting and, in the majority of cases, the biopsies are normal. In addition, these children’s symptoms are not as a result of being allergic to wheat. Although this is a small study, it is a step in the right direction toward the recognition of non-celiac gluten sensitivity in the pediatric population, and I am thankful that there is finally a research study to support its existence. I am looking forward to being able to read and share similar articles with you. Reference: Francavilla, R., Cristofori, F., Castellaneta, S., et al. Clinical, serologic, and histologic features of gluten sensitivity in children. Journal of Pediatrics. E-pub ahead of print. Nov. 16, 2013
  21. I had blood work done a year ago after a lot of things were going on and it came back like this:     Test Low Normal High Reference Range Units   Antigliadin Igg (Native)     25 (H) 0-19 units   Note:   Cascade continues         Atypical Panca   Negative   Negative       Saccharomyces Cerevisiae, Igg   <20.0   0.0-24.9       Ttg/Dgp Screen   Negative   Negative   The note said that it was "Suggestive of non-celiac gluten sensitivity. Patient may benefit from a gluten-free diet".    I had the test done initially because I had a lot of symptoms around fatigue, grumpiness, mind-fog, muscle weakness/spasms, and a few other stomach issues. Since it wasn't far off and out of range, I really didn't pay attention and only tried to limit gluten.   A few months later, I learned that I was also very deficient in Vitamin D. I was put on a starter dose, rechecked, and then wasn't told to stay on a maintenance dose, so I thought everything was fine. Fast forward to last month. Extreme fatigue hit me hard. I was sleeping 12 hours a day, blood sugars COMPLETELY out of whack (I'm a type 1 diabetic, and I usually have very good control of my blood sugars). I was falling asleep at work, and taking a LOT more insulin than usual. I thought maybe I was fighting off a virus or something, but then it kept on.    Last week, it hit me that a lot of how I felt was how I felt before the Vitamin D was introduced earlier in the year. So I started back on what my pharmacist recommended as a "maintenance" dose and I'm finding I have more energy, but it's still not as it was.   My question is, is it possible to have developed Celiac over time and I just didn't realize it? Or does gluten-sensitivity really effect someone that much? (Sorry if that sounds idiotic to ask... I'm really confused by all of this.) Should I be restested or just cut out gluten anyway?
  22. Trying my best to summarize what’s been a long process – for years I believed my energy, mood, well-being, etc. were dramatically impacted by what I ate.  I concluded sugar really hit me hard for many days after I ate it (and I love sugar) but the longer I went without sugar, the progressively better I felt.  But it wasn’t long that even avoiding sugar alone didn’t seem to be working as well, so I started limiting wheat and gluten too, but not complete exclusion.   I then had blood work done for a physical (I didn’t even know they included a celiac panel until I got results – so it’s not something I was looking for) and ended up being positive on 1 of the 4 tests.   The positive test is labeled as DGP IgA (it was 21 with a normal range of <6.1); the negative tests were DGP IgG, TTG IgA, and EMA IgA.  The summary on the results says that ‘results may support a diagnosis of celiac disease’.   The hematologist is very highly regarded but not a celiac expert and he told me he thought the DGP IgA test was new and highly specific and nearly conclusive if not entirely conclusive, but that I should see a GI specialist.  We both reasoned the other 3 tests were likely negative because I had been probably 80% or more gluten free for the preceding 6 months and my understanding is that those tests are sensitive to if you are currently ingesting gluten.   I immediately went 100% gluten free and basically immediately felt like a million bucks.  But a couple weeks into this I started eating gluten-free junk food because I thought – yay – sugar wasn’t the issue – it was gluten – so I started eating more sugar so long as it was gluten-free.  I very quickly nosedived in to feeling mostly like crap again despite being gluten-free (although I still felt moderately better without gluten).   After 2 months being 100% gluten-free but not feeling very good (but still eating too much sugar and gluten-free junk food) I finally got to see a GI specialist.  He saw the negative tests and thought that I didn’t have celiac (he thought it might be small intestine bacterial overgrowth – SIBO – which has many of the same symptoms) – but he didn’t think the DGP IgA positive by itself meant I had celiac.  He offered doing the genetic test on the outside chance we could rule out celiac – and lo and behold I just found out it did rule it out!  I don’t have any of the necessary genes.   So I am wondering if anyone knows why I would have a positive DGP IgA test when I basically conclusively cannot have celiac disease?  I thought the DGP IgA test measured only antibodies that would be present if you had an issue with gluten.   And if the answer is I’m clearly gluten sensitive in a bad way, but don’t have celiac, then I wonder why the establishment is resisting that diagnosis if someone like me can be positive on the DPG IgA test but not have the genes that allow for celiac.   Thank you so much for any insight at all – I know most here have or have had similar troubling issues and I really appreciate any help in getting to the bottom of mine.
  23. Hi everyone... I do not have celiac disease but I have something that mimics it and I can't figure out what is causing it. I had an EGD with biopsy and it showed duodenal intraepithelial lymphocytosis, top heavy at villous tips. Other than that, just some mild gastritis and esophagitis. The duodenal IELS in that particular pattern can be indicative of latent celiac sprue (but I am negative DQ2 and DQ*, negative endomyseal, no elevated TTG IGG or TTG IGA or anything like that so no celiac), H pylori (I am negative), NSAID use (I dont use any nsaids or medications other than multivitamins), Crohn's or colitis (I am negative... I had a colonoscopy with random bxs because i had this almost year long period of extreme diarrhea... like going over 10 times a day consistency of straight water.... negative for infection, but i did have WBCs in stool.. It would happen every couple weeks where i would have 3 or 4 days of this.. but since i changed my diet no more diarrhea at all and i am totally normal). The duodenal IELS can be indicative of a systemic autoimmune process.... I did have ANA checked twice and it was negative both times. I had rheumatoid factor checked twice and only one time it was slightly elevated... so a rheum doc... he said i show no signs of RA or anything so I'm fine. The only other thing IELs can be indicative of is small bowel overgrowth or infection... that's a possibility... even though i am negative for all infections.... but i thought maybe my flora was messed up or something with all that diarrhea... but I am fine now.  So now, I am getting strange problems not related to GI distress. For example, sometimes, the skin on the roof of my mouth will peel off. That only happens like once every couple months, but that's been happening for years now. I was having this period where I would wake up in the middle of the night and my left eyelid wouldn't open for a minute... just no feeling there. Then, I had PVCs in my heart for the first time ever in my life and they lasted about 2  months and then disappeared and ive been fine since. I would get about 6-10 PVCs a minute all day long. About 2 weeks after the PVCs stopped, I got a blepharospasm in my right lower eyelid that lasted about 2 and a half months. It would pulsate all day long non-stop and certain things would trigger it. Such as if i touched my forehead it would pulsate even more, or if i looked to the left it would pulsate more. I saw the eye doc and i have an appt with an eye specialist and they said they can shoot botox in the nerve to kill it... but just this week, miraculously and mysteriously, it almost disappeared... Funny thing is... Since i practically cut out all soy and lecithin like egg yolks the spasm is gone. I read that lecithin is choline, choline affects the basal ganglia in the brain, causing abnormal contractions in a hyperactive state to happen, such as with the PVCs and blepharospasm. SO that is just a theory I have...could just be coincidence. Oh, i forgot to mention, I have also had allergy testing and am negative for all IGE stuff i was tested for... also had the test on the arms where they check for like 40 different substances and i am negative. So then, about 6 months ago i started breaking out in these bumps that look kind of like acne, they are on my chest, top of shoulders, and upper back. They don't itch or hurt. So finally I went to dermatologist a few days ago and he said folliculitis (inflammation of hair follicle) so i said is that bacterial? And he said it can be but not always... can be caused by tons of things... so i just got some topical cleocin/clindamycin to put on it. I think it looks slightly better since i haven't been eating soy. Again, could just be a coincidence.  Now for my family history: my sister has something like lupus but they cant figure it out, she just got put on plaquenil, she also has hashimoto thyroiditis and autoimmune gastritis so she gets perniscious anemia from that. My brother has alopecia areata (which is healed now) and dyshidrosis rash on his hands. Lately he keeps getting these bout where his whole face swells up but he doesn't want to go to the doctor (and i can't blame him... i don't go to docs anymore either because it is so frustrating to just have multiple specialists always say i don't know... thats why i didnt go to the skin doc for like 6 months). My dad, his sister, and her daughter all have multiple sclerosis. I have 2 maternal cousins with Crohn;s and one maternal autn with ulcerative colitis. My mom had hodgkin's lymphoma in her early 40s, she is fine now other than diabetes. My mom's sister and their aunt (my great aunt) had Non-Hodgkin's lymphoma. So we have lots of autoimmune disorders and lymphomas in my family.  So, I am convinced that something I am eating in processed foods is making me react... at least, i think it causes some delayed inflammatory effect... i forgot to mention i also get ocular migraines with aura... def related to menses... but better by watching sugar levels. I exercise every day for 30 minutes and eat a healthy all natural diet.. though i do stray from time to time. I only eat a wheat product maybe once every 4 or 5 days. As of this week, I am avoiding soy to see if it helps with the folliculitis.  Back to the duodenal IELS... i read other proteins can cause that such as soy, gluten, cow dairy, cereals and rice, tuna, and eggs. Problem is.. when u have the IELS all u get tested for is the glutne and they don't test or even mention anything about the other possible food intolerances, and I know because i work for gastroenterology. It is really frustrating. Any advice, please!!!!
  24. Hi, fellow celiacs I have some questions on how this celiac thing is going to work out. Hopefully there´s someone out there with a story similar to mine: The first two and a half months on the gluten free diet, I felt crap basically. Two weeks ago I started sleeping less and being able to do more during the day. Then came this weekend and I am feeling crap again with balloon-belly and constipation. During the night I wake up every three hours because I am so thirsty and my mouth feels dried out. I then drink a litre or so of water, eat a couple of prunes to help get my system working, go to sleep again and repeat until morning. I was diagnosed with celiac disease 3 months ago by gastroscopy with "moderate atrophy Marsh 3b". Anti-deaminated gliadin IgG was 49 in September 2012 (down to 11 in January this year). I am a male in his mid twenties. The celiac was discovered after me being ill and partially bedridden during two years, for what doctors thought was "postviral fatigue syndrome". I have no other known illnesses. I regularly drink probiotics and try to keep a high-fibre diet. I work around two hours from home every day and do very little apart from that. If I talk too much I become hoarse and feel thirsty again. If I try to exercise more than a brief swim once a week, my limbs become heavy and I just start feeling incredibly tired. Staying out of bed then turns into an exercise in determination and self-discipline. After years of being ill I want a social life, be able to do sports and to get ahead in my career like everyone else. WHEN will there be an end to this? WHY am I tired, constipated, bloated and extremely thirsty? HOW will I know if I am heading in the right direction recoverywise?
  25. I am currently 19 years old. I live a pretty normal life but my stomach has been distended for quite some time. My stomach sticks out as if I was a pregnant female and its been like this since an early age. It has caused me some anxiety problems and has even gotten me on medication which I am now tapering off. I work out 4-5 times a week at a local gym nearby my house and i am in complete good shape everything is fit and fine.. everything except my stomach. I have gotten an endoscopy and a colonoscopy and the results were that i had chronic gastritis. I was given a list of foods to eat and not to eat but that didnt really seem to work.. or maybe i didnt follow it right? But i am still concerned and would like to ask if they could find out if i have celiac disease or gluten sensitivity through these two tests? my stomach extends out alot I dont have much pains and no diarrhea or any of the many symptoms im just gassy and my stomach is really out there. I appreciate any responses and would love to receive some help. Thank you.