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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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  1. I was diagnosed with Celiac October of 2015. I was very unhappy when I received the initial diagnosis and spent a few months angry and frustrated as I adjusted to a gluten-free diet. I managed to change my diet and my attitude as I slowly became thankful that I had a disease that could be treated by just avoiding gluten. Fast forward to this week, I was diagnosed with Diabetes* (they think it's Type 2, but we're still testing to see if it's Type 1 or Type 2 or a hybrid) and I feel like I'm right back where I was when I first received my Celiac diagnosis in 2015, but worse, because now there's a whole universe of foods I have to be careful with (in addition to having to take medication with gross side effects, change my physical activity, and test my blood glucose levels). Many of the gluten-free substitutes I relied upon are now unacceptable (because of their high carb content) and items that used to be completely safe (fruit, vegetables) now have to be monitored and recorded. I'm frustrated and sad and feel like I'm back at square one. My initial internet searches for Celiac Diabetics haven't turned up much in terms of community. When I was first diagnosed with Celiac, these message boards were really helpful. I'm hoping to find other people who have the co-diagnoses and to learn how they coped and what recipes and products they rely on. *I received an initial Diabetes Type 2 diagnosis (based off one in-range A1C, which is not the standard for diagnosis, but the doctor had erred on the side of an early diagnosis to get me into the diabetes management classes) when I was diagnosed Celiac, but my A1Cs went back into normal range once I went on a gluten-free diet, so the diagnosis was rescinded (with the thinking that the insulin resistance was attributed to the cortisol and adrenaline of a gluten-eating Celiac).
  2. My mother was diagnosed with acromegaly in 1976. She became part of a research study in Boston. I am 60 and showing signs of possible pituitary adenoma. I have a history of elevated white cell counts,elevated CRP, severe spinal degeneration, now gluten sensitivity and lactose intolerance. 73 old sister hypothyroidism and possible pit adenoma. 76 year old brother just diagnosed with Celiacs and had kidney adenoma removed. I had total thyroidectomy 2014 for adenoma and also had 3mm malignant papillary thyroid cancer. My question: Due to chronic spinal pain, I have been seeing a pain specialist/anesthesiologist the last two months, 30 years experience and he is aggressively looking for answers. So I have had 4 doses of cortisone. 3 less than a week ago. That night did not sleep, next day could not remember what day it was, not alert. Have had a tremendous amount of anxiety/stress. Over next 4 days slowly difficult breathing, weakness, dizziness. Today sent to hospital. I have no history of alcoholism, no gallbladder (question if had acute pancreatitis then), no thyroid. As a child I had the floating/oily stool testing and cramping, painful diarrhea. That has all come back. Do you recommend that my endocrinologist order IGF-1 testing? Other tests?
  3. I just got hired on as an employee at del taco. im afraid of maybe getting cross contamination somehow? like flour in the air or something?? im just very scared.
  4. Hi everyone, I've had pale foul smelling stools for an extended period of time which can sometimes alternate between diarrhoea and constipation with very rarely some red/white spots in the stool along with lower abdominal pain and pain below my ribcage/lower sides which I'm terrified is to do with my lymph nodes. When I first went to my doctor he gave me some treatment for IBS and also got me in for a blood test. All my bloods came back normal apart from my liver which really freaked me out at the time and I have another blood test in a few days time. I have been gluten free for about 2 weeks, since my first blood test, and symptoms haven't stopped although gluten free food does seem to sit in my stomach easier and I have felt less fatigued upon going gluten free, though I did unknowingly eat some gluten last night and have had a very gassy stomach since. The symptoms can also be heavily exacerbated by alcohol however. I'm 18 years old having just started university in the UK and this things are getting to the point where I'm struggling to cope. My fears are also making me feel like I could have some kind of cancer or Crohn's disease and at 18 this is turning me into a complete wreck. Is it likely I have Coeliac or could it be something much worse? I'm starting to fear the worst!
  5. I was just wondering if anyone has ever had the Apothic Inferno red wine? It's aged in whiskey barrels, and wondering if its gluten-free? Anyone have a reaction? I cannot find any information on their website about it being gluten-free or not. Thank you.
  6. Is Non-Celiac Gluten Sensitivity and/or Celiac disease really Pellagra in disguise in the 21st Century? Whether to supplement or to not supplement by the Posterboy What to say? What not to Say? So many things to cover. . . yet so little time/room for it in only one post. Let me be clear. I think it is or was in my case. That is I think one disease lead to the other. Your story might be similar. Which one to choose? Supplementation I think answers/answered that question (for me) at least. And I hope it will you too! In the work place we have a phenomenon called “Silos”. “That is not my job” is heard way too often. Instead of let me see if I can help you with that! Right? It would be called or known as good Customer Service if we were in business for ourselves to offer help. But not in medicine . . . it is stay off my territory/turf and an all-out war breaks out. But when it comes to diseases/symptom’s that are or can be “Differential Diagnosis” we have that same bunker mentality or “Silos” thinking. Talk to your friends who have NCGS or Celiac disease (and I have tried) and inevitably they will say . . . I do not have Celiac . . . I have IBS or I am not a Celiac (yet) I have NCGS instead. Or talk to a UC patient (stuck) in their Silo (diagnosis) or a Chron’s patient . . . and the lament is the same. I do not have that. It is almost a knee jerk reaction. “I can’t have that”. I know because I have tried diligently to educate my friends and many forum members on this board of how Pellagra makes more sense when you stop and ask seriously “What else”? can/could cause these/my symptom’s. I recommend this thread/post where other forum members staunchly defend their silos/bunkers. In it NCGS, SIBO and Pellagra sufferers battle to the proverbial death over their positions. Let me say at this point???? Who knows who is right? Captain NCGS could be right or SIBO girl could be right or all three could be right! But it is better to settle on one diagnosis (usually) and run with it so to speak. And each in turn have faithly done this and ran to their bunkers to get more fuel for the fight? (SIBO girl) I am sorry I don’t know the percentage for SIBO that becomes’ Celiac or Pellagra. But for IBS and NCGS the failure rate(s) are horrible. For weatherman we would be happy with 50/50 right? (though they are getting somewhat better these days) A good baseball player is said to be good when he bats .300 or better. He is doing good. Well in Celiac’s we are still well below that number. We are not doing good at catching Celiac or is it Pellagra early enough in the sub-clinical phase? where it could prevent the most harm! See this post where 90% of Celiac’s in Canada is missed or Misdiagnosed. https://www.celiac.com/articles/24919/1/Are-Doctors-Missing-90-of-Celiac-Disease-Cases/Page1.html quoting “Among their findings is likely ~1%, with 87% of cases being undiagnosed.” And the rate in the US is only marginally better at maybe 80% being misdiagnosed. They even pose this important question? “Why? Or How could this be?” They are puzzled at such a high misdiagnosis of Celiac disease. Quoting again “How could this be? One reason is that even classic celiac disease symptom, such as abdominal pain, bloating, gas, diarrhea, anemia and weight loss can mimic other conditions. Less classic symptoms such as fatigue, low vitamin C, D and calcium levels can be misleading.” Lupus is known as the great imitator disease. And Celiac or is it Pellagra could be called the same in 87% of cases if you are lucky. They say imitation is the sincerest form of flattery. Well not in this case (it is all out war). One disease is being disguised at the other. Which one to choose though since they both imitate each other. For me supplementation let me see which was the last disease/man standing so to speak. But let’s go back to our bunker(s) of symptom’s and defend/ask/consider how in 87% of cases we know we have the wrong disease. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html As to/for the IBS sufferers If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS? The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly just UC or other GI disease presumably. It is even worse in NCGS cases. https://www.celiac.com/articles/24448/1/Gluten-Definitely-Triggers-Symptoms-in-Some-NCGS-Patients/Page1.html 90% + of NCGS have the wrong diagnosis . . . but don’t point that to anyone because “I don’t have that disease” artillery will come out and blast you into smitherins. In the military it is called “friendly fire” whatever that means right. You can’t make anybody happy it seems. I am a “friendly” here. Tell someone (a Chron’s) patient they could have Celiac and duck for cover because “friendly fire” explodes. Pick your “poison”. . . IBS, UC, Chron’s, NCGS, SIBO etc. and be prepared to be gunned down in cold blood (forgive the analogy) lest you suggest somehow in some way a “differential diagnosis” makes more sense. A valid I dare say standard “process” of modern/good medicine is the differential diagnosis. If it is not the doctor has not done justice for you or you for yourself has not done you justice. Isn’t that what we all want – to know just what we need to do to get better that is justice/peace and good medicine. We are our own best advocate! Supplementation to me answer's that question and Is good customer service. Think of/about the show House who inevitably get’s the diagnosis wrong the first time and the second time and maybe (if it is not a two part episode) by the fourth or fifth try we learn an hour later what took months to determine you (the patient) has NCGS, SIBO, Chron’s, or Celiac disease etc. and the patient goes way coming in feeling crappy but goes away happy! Oh wouldn’t it be nice if “real life” imitated art sometimes. So if the “war” you find yourself in (Chron’s, NCGS, UC, etc. and yes Celiac disease) is imitating Pellagra then consider a “Differential Diagnosis” if you are like the 58% of Celiac’s who also have Pellagra. http://pubs.sciepub.com/ijcd/3/1/6/ Maybe . . . just maybe you will find you are like me and getting a valid differential diagnosis helps your GI problems too! The odds of this happening is (far) better than you think. https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html I ask again Is Non-Celiac Gluten Sensitivity and/or Celiac disease really Pellagra in disguise in the 21st Century? Let me be clear. I think it is or was in my case. Because if you get the wrong disease the battle (war) in your GI will wager on but if it is Pellagra then the battle can be won. Peace how sweet the sound! If you have not heard of Pellagra and if it was not part of your valid “Differential Diagnosis” http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ Don’t’ be surprised by this most doctors’ have not either. Read Dr. Heaney’s blog posts where he summarizes why this is today! quoting “2014 marks the 100th anniversary of the war on pellagra, a war that lasted nearly 25 of those years before victory could finally be declared. You have not heard of the war on pellagra? The celebration is not on your calendar? You’re not alone. Why did it take so long? Was the science so intractable, like the current “war” on cancer? No. It was politics (differential diagnosis) and pigheadedness (Silos) that were the obstacles.” The science is valid. A Differential Diagnosis is “good” medicine but it will be hard to believe this because of our/are bunker mentality. (I know I have done the same thing) It is said the longest distance/foot in the world is the 12inches from your head to your heart. It only took me 4+ years of research to convince me that more than ever the 90+ percent of the most common GERD/Gluten/NCGS/IBS, Chrons’, Celiac disease issue(s) etc. GI problems are related to sub-clinical presentation of Pellagra unrecognized in a clinical setting. Or imitating first IBS and NCGS then Celiac disease (in time) if you will. If you know in your head something else is still wrong then let your heart be open to another front of the war co-diagnosis/co-morbidity/supplementation. Or if you have/continue(d) to develop more leaks in the dam (leaky gut, SIBO etc. or other food allergies in addition to gluten) then consider Pellagra as a valid differential diagnosis. Especially if CORN is now bothering you too! The medical definition of Pellagra first diagnosed/discovered in corn products 75+ years ago is Pellagra. Since auto-immune diseases rarely occur alone it only makes sense to tackle the easiest one’s first. On this board there are two camps. (It is true in many things of life). Supplementing or not to supplement is the 64K dollar question. The one’s who believes in supplementing readily attack the front (symptom’s) on/from whatever artillery (vitamins and minerals) they can find to shore up their defenses. The other camp prefers to hunker/bunker down and wait for reinforcement/symptom’s to get better and the battle/siege to pass. But in war there is an old saying. “A city besieged is a city taken”. I prefer to advance when possible to take the “fight” to the enemy. Supplementing allows me to do this. .. and this is how I learned to fight back Pellagra disguising itself as Celiac disease today. Disguise is a great trick of the enemy. For if you get the wrong diagnosis then the symptom’s never getting better and the battle/war rages on. But What If you have the wrong disease? Would you get better? This is dedicated to kareng for she once asked me why? worry about a disease I couldn't be sure I had over the one I knew I had. . . without supplementation I couldn't be sure if it was Pellagra or Celiac disease I was fighting. Supplementing answers/ed that question. It removes/d a front in the war. So what do you say are you ready to fight back the enemy? It might not be the one you think. Two front wars are rarely winnable. If they were I might be typing this in German. I need to stop for (now) but this is my story. . . maybe yours is similar you will only know if you are willing to try. I can only tell you what helped me. I can’t tell you if it will help you. Praise bee to God! To those who will hear and listen! Let me say (Thank you) at this point to Jmg. Thank you for taking the Magnesium and a B-complex and telling others how much they helped your "tiredness" etc. . . I know there is a lot of confusion out there. I am just trying to help those who are still suffering (losing the war). For a battle the war was lost. I implore you don’t’ let it (war/diagnosis) be lost because of “pigheadedness” to use Dr. Heaney’s words because you won’t try fighting back with supplementation. The Starfish Story Original Story by: Loren Eisley “One day a man was walking along the beach when he noticed a boy picking something up and gently throwing it into the ocean (world wide web) … Son, the man said, don’t you realize there are miles and miles of beach and hundreds of starfish? You can’t make a difference! After listening politely, the boy bent down, picked up another starfish, and threw it back into the surf. Then, smiling at the man, he said "I made a difference for that one.” . . . I hope that one is you reader -- fellow sufferer from a former Pellagra sufferer diagnosed as Celiac disease. I am that Celiac and Pellagra posterboy walking along the shore throwing starfish back or trying too! As I am fond of saying “To Educate is to truly free!” Where there is a free exchange of knowledge there is health and peace for one’s soul and body! Let’s all make peace for to educate is to empower to change. Change is not easy . . especially if you have a bunker mentality I grant . . . but possible with education for with education comes understanding. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (starfish/sufferer), by the comfort wherewith we ourselves are comforted of God.” Remember **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your regimen. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the Grace of God, Addendum: The Time has Come to talk of Walruses and Kings and Many Things (Hat tip to Jmg you know who you are – your wit is priceless) a horrible paraphrase of Lewis Caroll’s quote. I think I am an American who was born with British humor sometimes because who doesn't like a good quip. . . quote or misquote. Like your NCGS bit/disguised as NCIS. Imitation is the sincerest form of flattery -- unless it is medicine then it is the unkindest cut. . . (See I can't write a short thread/a long winded American with British wit) Truly the time has come for me to spend some time “mending fences” and spend more time either away on the farm helping my brother or at least a “little time” away somewhere else/doing something else. My changing life requirement(s) and other spiritual interest(s) has/will take/are taking me away from this board more and more till it is less and less. And in time people will ask what ever – happened to “posterboy” and his low stomach acid problems. I can only hope what I have shared here has lifted the tide of knowledge a little about stomach acid issues and your boat/life has been lifted enough for you to freely sail again. Take what you have gained and share. . . at every port you land in . . . who knows what/ where the wind of (life) might take you. I know I will miss many of you on this board but my experience does not match up with many others on this board and I don’t want to impose my ideas where/if they are not wanted or don’t seem to be doing any good. If anyone else thinks they may have low stomach acid who is reading this like I had feel free to PM me and I will try and answer any question I can but searching for the posterboy on celiac.com is the easiest way to find/answer most any question you might have. (For I can’t answer/write) a short thread and always tried to be exhaustive in my answers. I will still comment when from time to time if it feels right and my experience of low stomach acid being misdiagnosed can help those still suffering. https://www.celiac.com/gluten-free/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/ It is my hope that at least some starfish/sufferers have found hope/help in the things I have suffered with/and shared about how /what helped me. Praise bee to God! It only takes one to make a difference! Don’t every stop being your own advocate! 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (starfish/sufferer), by the comfort wherewith we ourselves are comforted of God.” 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,
  7. Wanted to thank you all here at the forum for your messages, in the course of past two years it has been of much help and encouragement for me to read it and to know that I'm not alone in what I have been going through. I'd like to share my story in case somebody would get any benefit from reading it and in case there is anybody who can suggest something... I got first problems in 2009 when my fingertips started cracking all the time - deep cracks, bleeding, painful, etc. a continuous vicious circle. I just lived with it, it was manageable. I saw a few doctors, they said it was dishydrosis and that was it. In 2012 or so I got first eczema on my right hand little finger that then went on to grow and spread steadily during the following years and ended up to cover my entire right hand palm and moved on to my left hand little finger. At the end of 2015 I experienced first major problems that forced me to go on a strict diet (I saw an article in the internet that explained such eczemas by candida overgrowth). I stayed on that candida diet for something like two months and got a complete relief from all symptoms. The symptoms were overall fatigue, skin peeling off on my forehead, further growth of eczema on my hand, terrible itch and pain becuse of the eczema (I remember dropping on the floor in tears because of the agonising pain), and the last drop was hair loss... That diet helped and I now knew that my problem could be managed. I started reading stuff online trying to figure the connection and what was actually wrong with me. I did some lab tests, I did not have candida, I actually did not have any problems, all lab tests came back clear. I spent 2016 staying on diet on and off, balancing between flareups. I gradually started getting bloating episodes that lasted up to a week with certain discomfort breathing, walking, etc. Through experiments I figured that certain products made me feel worse and made the eczema worse. First was gluten. Avoiding gluten really helped. I could eat gluten one-two times but after several times I had a full flare up (no noticeable stomach problems though), so I started cutting down on gluten. Then soya joined the blacklisted gluten. And then came the spring of 2017 that I will never forget. I am attaching three photos to show what my hand was like. I could hardly use my hand, it would swell, burn, itch, pain. I started getting spots of eczema all over the my hand, spreading on to my left hand and it got really out of control spreading too fast. I tried going to doctors again, tried taking their medicines, all to no avail. Returning to diet and finally cutting out lactose removed the agony within two weeks. So, here I am now - intolerant to gluten, soya, nuts, any forms of sugar (including fruits), lactose. On top of that I am vegetarian (well, now a forced vegan). The reason why I am writing here is although I am strict with gluten I still get some (milder) flareups that are caused by even smallest amount of anything that's off the "diet" things. I can get a some flareup by cleaning some dusty drawers, by sleeping on a bed with dusty floor undernearth, by using spice mix that obviously has something wrong mixed in it, well and of course by eating something wrong when I get weak (and stupid).... Just to give you an idea, when I go to a store I cannot buy any snack at all that would be safe for me. All food that I take has to come from my kitchen and my pots... I have stuck to absolute diet for 3 months but within a week after I started adding some food like fruits or nuts to see if I was still intolerant to it, but I again get back to having problems... I have tried getting tested for allergy (nothing), for stomach problems (nothing), ultrasounds (nothing), blood test for clieac (nothing). Doctors here do not know the cause and do not get concerned also (the doctors just say oh if you feel you cannot take certain foods, then don't take them - duh, but when the list of those tihngs is that long?). Stomach biopsy is not done in my country (unless the patient is dying I guess). The only medicine that I take that helps me is an absorbent that is supposed to take out allergens out of the guts and is taken during poisoning (someting similar to activated charcoal). I took antihistamines almost every day in spring 2017 and I ended up always getting too drowsy for one-two days (even from the non-drowsy ones), so I have stopped taking them. The reason why I am writing all this and why I'm happy you have read till the end is that I feel disheartened and it is very hard for me to actually come to terms with this kind of diet especially because all lab tests come out clear and objectively there is no proof that I do have any allergies or intolerances or stomach problems. I'd appreciate to hear you take to it and perhaps some advice...
  8. Hello, I am a 22 year old female - normal weight and height. When I was 20 years old I started waking up with a swollen lip, or swollen face - to the point where I was no longer recognizable. Sometimes both lips swell and I literally look like plastic surgery or injections gone wrong. Doctors couldn't find anything and allergist came up with nothing. I went to the naturopath and they tested my sensitivities and told me to cut out a long list of foods including gluten. I cut out all foods and started bringing them back in except for gluten. I went gluten free for about a year and I had only swelled up once while I was gluten-free. (before this diet I was swelling up 2-3 times a month). I am a student and when the reactions happened I couldn't leave the house, but I am beginning a job in January and I cannot be taking off work for these random episodes Sometimes I have swelling in the ball of my foot and it gets VERY ITCHY and hot. A few times I had swelling in my wrist and the next day when the swelling went away, my wrist was still very sore. Other nights I wake up and my throat feels like it is swelling and I have a hard time breathing. I started eating gluten again here and there. A beer here and there, a burrito from time to time, and I have had no swelling - but today for the first time I had real pizza and my foot is swelling and I feel my face about to swell. NOTHING helps the swelling go down other than just time. No allergy pills help. My doctor told me to take allergy pills every night for the rest of my life basically. I don't have any digestion issues or other pain so I am not sure what I have or what is going on. My doctor also doesn't want to test for celiac, as too many times it comes back as a false positive....... Has anyone else had these symptoms or heard of them?? Any advice will help! Thanks!
  9. Hello everyone! I've been squatting this forum for while but never made an account or said anything. As most people, I'll try to give a complete picture since we all seem to take it so differently. I am a 23 years old female University Student, on my 3rd year. When I first started, I had to deal with a tremendous amount of stress. I believe this is what triggered celiac disease in me, but I could be wrong. It's just that I felt perfectly fine before that. Here's the deal though: while I do have symptoms, NONE of them have to do with my digestive system, so it took a long time before I took a hint. At the end of my first year of University, I was super tired but everybody in my class was so I assumed it was normal. A month and a half into summer break, I realized resting should not take that long, so I went to see my doctor. She had me do lots of tests and found that my iron was very low (10). I took iron supplements and started my second year of University. Of course I started feeling better, I lost the constant migraine, near fainting weakness, things that were mainly associated with Iron deficiency. By December, my doc calls me to say my iron is golden, it's above average, "victory". While I felt better, I still didn't feel like a 22 year old should, so my doc met with me again. She said we should check me for celiac. At first I thought it wouldn't be it because I didn't get bloating, stomach pain, constipation...nothing. All I got was an iron deficiency -which is more a result than a symptom-. Obviously, tests came back positive. I have Celiac Disease. That was in May of this year (2017). My gut is "moderately to severely" damaged. Knowing school would be no good in the state I was in, I did the most I could to start helping it. Webinaires, read about it, ask about it, get tips. While I did not have a vitamin D deficiency, my doctor still had me take some to make sure it doesn't happen. I was given probiotics, as well as some other stuff to support my whole body (my liver had stopped filtering things, thus my thyroid was starting to have a hard time too) My liver is now fine. Yay! Back to school for my third year, it's not so bad, I know I'm far from being at my best but I'm forgiving towards myself. Now my main problem is Brain Fog. Major Brain Fog. It's not always as intense but it's always there a little, and sometimes so bad that I can't do anything with my day. It's just...weird. So I want to know. Is it normal if brain fog is still around after 5 months or so? Will it EVER go away or do I now have no future because it seriously hinders my schooling? As for my diet... Gluten-free since I was diagnosed. I got glutened a few times (hard to know since no direct symptoms) but eliminated those risks whenever I'd find out. I don't go out except that one restaurant where the cook is celiac or that other where they have a dedicated fryer. I didn't change all my cooking gear but gave it a thorough clean (the salary of a student doesn't really allow for much more). I live with my boyfriend and he is probably more maniac about cross-contamination than I am (he toasts his bread in the oven to keep the toaster gluten-free and will adamantly refuse to touch ANYTHING ELSE until he cleaned his hands). I think I'm doing fairly well in that department, so assuming that I'm doing this right -or will progressively learn- is my life still going to consist of feeling like a dumb zombie? If not, any idea how long it could last?
  10. I would like some help in understanding my results from the 23andme test. I am being told that I have 2 copies of a genetic variant that was tested. The variants were detected in the HLA-DQA1 gene. "We detected two copies of a variant linked to the HLA-DQ2.5 haplotype." Do do these results mean? In the HLA-DQ2.5 - HLA-DQa1 - rs2187668 - there are two TT. Is this bad? Is this what is mean by having homozygous hla dqa2.5? I am new to all of this and am just looking for some answers. I am concerned about being at risk for celiac disease. Thanks!
  11. I was recently diagnosed as gluten intolerant or with non-celiac gluten sensitivity. The doctors told me I could try eating gluten to the point where I could tolerate it. I have noticed that, at first, I definitely didn't feel good but that it wasn't bad enough to keep me from cheating every once in a while. Over the last week however, I was on the road for work (I'm an admissions counselor) and I couldn't find anything gluten free on the run and so I grabbed something quick and I immediately felt ill. Then I ate something that they told me had breadcrumbs in it not thinking that a few crumbs would bother me and immediately felt like I was going to loose my cookies and now, a few hours later, I feel itchy all over. Is there a chance that I could be developing Celiac's by constantly exposing my body to it? Has anyone else noticed their symptoms coming on faster and getting worse over time? I can't find anything online that says if this is possible or not.
  12. Hello, Apologies in advance if this question has already been answered, but I can't seem to find an exact answer. Recently diagnosed Celiac after about six months of symptoms, tests and stress. Finally went 100% gluten free over a month ago (food, medications, cosmetics) and am finally just beginning to feel and see some small improvements consistently. For continued malnutrition and still-persistent bowel issues, my doctor recently prescribed me Zenpep enzyme supplement (25,000 lipase USP units; delayed release capsules) and within a couple of hours of taking it for the first time I've been experiencing what feels like light glutened side effects for me so far - dull headache, slight brain fog, mild abdominal pains. I'm curious: Is Zenpep gluten free? If these symptoms are normal or expected when first beginning to take Zenpep or supplements like it, I'm willing to give it some time, but if not, it's understandably defeating as I was finally on a good symptom-free run. I've reviewed all of the active and inactive ingredients on Zenpep.com, and though it's not officially labeled as such, it appears to be gluten-free. However, am I missing something? I'm also awaiting a response from the manufacturer. If Zenpep is gluten free, then would there be any other common reasons or predispositions that may cause this reaction? Can taking pancreatic enzymes not always be a good idea for Celiacs? Hoping for any anecdotes of people who are Celiac or severely intolerant and have taken Zenpep. Sorry for long post - thank you so much!
  13. Hello. I'm looking for some guidance. My ultimate question is do I need to get some more tests done at this point? I don't believe I have enough info for a celiac diagnosis but I have been mostly gluten-free on and off for a couple of years now. 1. I was going to an integrative clinic for some nutritional sensitivity testing and my provider (a NP) discovered I was iron deficient. She then gave me a gene test and I was positive for one of those genes for Celiac. Given this information and some of my symptoms (mostly bloating and gas, occasional diarreah) she diagnosed with with Celiac. I also had trace amounts of red blood cells in my stool which I think she was concerned about. 2. A couple of years ago I was having right abdominal pain/discomfort at the bottom of the rib cage (later figured out this was muscular, I had an ultrasound and everything). At that time, I saw a GI doc who tested me some Celiac antibodies. I barely had eating any gluten in the weeks prior to that (maybe just a couples of pieces of bread or something). He said my antibodies were not indicative of Celiac. 3. I am also dealing with hypothryoidism and I'm working on getting those levels right. So some of my other symptoms (fatigue, weight gain, some joint pain, etc). are likely related to that... Do I have Celiac or do I not? It's really confusing when you get the diagnosis but you don't believe it because I haven't seen a positive antibody yet. I have some odd health problems over the years (large tumor on my ovary- benign, tumor in my thyroid- benign, and sudden right ear deafness) but I have no other diagnosis. I'm guessing I need to go to a GI doc who will test antibodies? Giving up gluten is a HUGE commitment and I never stick to it for more than a few months. I believe I need to know once and for all if I have it or if I am at "high risk" for developing it (given the gene) and that will determine my diet. Any tips or help welcome!
  14. Let my start by giving a brief summary of what I’ve been diagnosed with. Just over the past year I’ve been diagnosed with Celiac, EOE, lactose intolerance, soy allergy, tree nut allergy. Most recently diagnosed with Ulcerative Colitis. The Colitis came 8 months after having found out I had celiac. I have never had problems with gluten in my life. Dairy was something I had to eliminate because of the excrutiating stomach pains I would get from it. But I can have gluten any day and not have a problem. I was diagnosed with a biopsy and followed by bloodwork. But who’s to say that dairy wasn’t the cause? I just feel like the GI was very quick to jump on the diagnoses without fully understanding my medical history, prescriptions I’ve took in the past ie long term antibiotic use, accutance, and 7 years of constant NSAID use.
  15. I was inspired today for two reasons. (Sorry for the formatting) 1) my brother recently had an emergency that required hospitalization and two stents to be put in his heart. Every Hour Counts/Every Person Counts 2) this new research about Zika and the implementation gap/clinical delay in recognizing a disease in clinical setting. http://www.nejm.org/doi/full/10.1056/NEJMp1707273 AS someone who has had BOTH Celiac and Pellagra. I can tell you that it can be difficult to tell them apart sometimes (most times). In many respects they look like twin(s). Both have GI problems as a presenting symptom’s. Both have Skin Issues in their presentations (clinical appearance). Both can have dementia/neurology symptoms. SO you can see how easily one can be confused for the other? And often one twin (disease) is picked over the other. What does this have to do with Zika. Only this Quoting the New England Journal of Medicine from the article and applies here when contemplating any disease’s symptom’s. “Translational gaps are not unique to Zika; similar challenges exist throughout the health care system. According to several estimates, it takes an average of 17 years for research evidence to reach clinical practice. 2 One study showed that patients receive only about 55% of the recommended processes involved in medical care. 3” So let’s say. Today they find a miraculous cure for Celiac disease or NCGS. . . it would take on average 17 years for doctor’s in Clinical settings to apply these technique’s to eradicate new Celiac cases/disagnoses from occurring. Now in this hypothetical case (which doesn’t exist yet) it would take another 17 years on average for doctors if they knew today that Pellagra (which they don’t) can mimic Celiac disease in a Clinical setting. But one does exist (it is not hypothetical) – a cure for Pellagra exists today. It has in fact existed for 100+ years and still doctors don’t recognize it today. Every hour/patient matters. And why I have tried diligently to educate other Celiac’s of this maddening fact. In 2015 a medical association was established of Pellagra occurring in/with a Celiac diagnosis. http://pubs.sciepub.com/ijcd/3/1/6/ Quoting from section 3. Pellagra and Celiac disease in this ground breaking research. Pellagra and celiac disease “The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40].” So if their (NEJM) timeline is correct. It will be 2032 at the earliest for the Clinical delay to catchup to research. As I mentioned earlier it has been 100+ years since doctors’ have seen Primary Pellagra in a Clinical setting. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ And it isn’t Primary Pellagra that is the problem here. It is a phenomen that is called Secondary Pellagra. It didn’t know what it was either. And I have studied the topic extensively. see this entertaining thread where SIBO girl, Captain NCGS and Pellagra boy are superheroes saving others from their respective disease's They are all superheroes in their own right in my mind (hat tip to you both) and good luck on your continued journeys. Now back to my updated blog post on the "clinical gap" that is so devastating. See this link from the doctor’s healthy press (Yes doctors have to look things up too) that explains the difference very well. https://www.doctorshealthpress.com/food-and-nutrition-articles/pellagra-vitamin-b3-deficiency-causes-symptoms-and-treatment/ I will quote for reference. 1. Primary Pellagra “This form of vitamin B3 deficiency is related to a lack of nutrition, such as not getting enough eggs, meat, seafood, or green vegetables in your diet. Alcoholism is often a factor with primary pellagra, for the reason highlighted above. 2. Secondary Pellagra Those who regularly consume sufficient amounts of vitamin B3 may still deal with this condition. Secondary pellagra is the result of improper absorption of the nutrient, whether as a whole or partially. This is observed with gastrointestinal diseases that do not accept the niacin.” (Celiac disease) It is me again pellagra and celiac posterboy. So now we know what else it (Celiac disease) could be? Now the question remains will it take another 17 years for the doctor’s to have you checked for it or for you to believe a Vitamin might help you? Now Pellagra (and other B-Vitamin diseases) can be tricky to diagnose. Because for some diseases there are not good/reliable “blood serum” test’s to confirm the clinical suspicions. A cause and effect method is often used. If taken the B-Vitamin (NIACIANMIDE) helps your GI problems then Pellagra or at least Secondary Pellagra was a contributing factor in your GI problems. Dr. Prousky tested this theory. You guessed it almost 17 years ago. Next year will be 17 years and still this modern research has not trickled down to a Clinical setting. http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm And why I have been inspired to share my Celiac story of the road not taken. The Pellaga road was not taken in my diagnosis either. The doctor's did not know this could be a valid reaction to NCGS or Celiac Disease. Knowledge is power. Now you have the knowledge to do different and probably better than you are doing now if Secondary or Rebound Pellagra is causing some of your same GI problems and this is making your original Celiac disease symptom's even worse. This is mostly for those still looking for answer's despite being gluten free for 2 or 3 years and are still having "control" issues or have become ultra sensitive to many more proteins (food allergens) like even Corn for example. Pellagra was first diagnosed with corn based food stuffs. And promptly forgotten years ago. See this great newspaper summary of how "Pellagra in the South" presented itself 75+ years ago. It is actually a fairly new article about this topic. Only a year old. And found it amazing that others (though few) still talk about it today. http://www.timesfreepress.com/news/life/entertainment/story/2016/jul/12/clif-cleaveland-pellagrand-history-south/375065/ But doctor's haven't yet figured out that Rebound/Secondary Pellagra is estimated to occur in 58% (majority) of first diagnosed NCGS or Celiac patients. If the normal clincal adoption curve applies here then it will be another 15 year before doctor's acknowledge that indeed the corn allergy occuring in Celiac's is really from Secondary Pellagra. You have probably heard this phrase there is a "generation gap" . . . well if the trend holds in clincial adoptation and bleeding/leading research then indeed it will be another "generation" before this "Clincial Gap" will be closed. Then and only then will people begin to listen and get better . . .And I hate that for those still suffering . . . because every hour/patient/person matters. ****this is not meant to bee medical advice only the path I took. Yours might be different. But there is a 50/50 chance it might help. I don't know what else to say. With my changing life and farm responsibilities/realities I will not get to participate on this forum the way I once could so I wanted to say what happened to me with the hopes it might help those who might be still be suffering from rebound/Seconardary Pellagra triggerd by their NCGS/Celiac disease. You can rebound from Pellagra. I have praise bee to God! The Celiac diagnosis might still be retained if Secondary or Primary Pellgra was not the cause but if it (Pellagra) was the primary cause then the Secondary Celiac diagnoses/symptom's will improve with Niacinamide supplementation taken 2 to 3 times a day for 6 months I truly believe. I have emphasized the NIACINAMIDE form on my blog posts/in my threads because it is the non-flushing form of Niacin. see my earlier posterboy blog post for/on how to take Niacinamide FAQ and why you would want too. Or if you prefer you read this thread that talks' about Vitamin's and Mineral's role (or lack thereof role) on/in inflammation in the body. It focuses especially on how Magnesium and B-Vitamins can help depression. **** Again this in not medical advice. One size does not fit all. Some people do respond to supplementation. Some do not. You will only know if you try. . . . and sometimes you might have to try more than once to find the right form/Vitamin you need to take and why I have emphasized the Niacinamide form so you can learn from my mistakes! This is not the end of your journey. . . this is only beginning . . you will still want to supplement with the other (now) missing nutrients like Vitamin D (if you are low) or a good B-complex etc. and the Magnesium Citrate/Glycinate (mentioned in another thread) But I must end for now. I hope to update my blog sometime in the future (about the supplementation question and what helped me) but can't do so now. I would refer you to one of Ennis_Tx many post's on his supplementation program for now or one of Knitty Kitty's threads. They have both done very well with supplementation and are bedrock kind of people who can give you great advice learned from life's experience. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included posterboy by the grace of God,
  16. I recently took a blood test and went over the results with my GI doctor who will be performing and endoscopy and colonoscopy on me soon. I can't remember exactly what she said, but I believe she was talking about my IGA-TTG levels. She said the normal range was under 10 but mine was 639. I think she was talking about IGA-TTG but I'm not sure. For people who have done this test what were your high levels? Thanks! Female, 16
  17. You find a magic typewriter in an old musty box in the attic. It will allow you to write a message to yourself on the day that you found out you had celiac (or gluten sensitivity etc). You can include anything you've learned about yourself, handling celiac, good strategies for coping, how to deal with emotional issues, hostile reactions from friends and family, travel, work, dating. etc. You may not include details of who won the World Series / next weeks lottery numbers etc as this would break the space time continuum and the typewriter will give you a nasty shock if you even try it, so just keep to the celiac insights.
  18. I thought I'd throw this question out to the community. If you had a magic wand and could eradicate one commonly held misconception about either celiac, ncgs, or both, what would it be?
  19. Hello, I am a young man dealing with some Thyroid issues, along with some general digestive issues. A long time ago I was tested for Celiac disease via blood and was told I had it, but then had an endoscopy to confirm, and actually I got the results back, but I could never really decipher what they meant, so i just assumed I had it to be safe. I'm taking a much larger role in the control of my health now, and I deem it necessary to be less assumptive and to make sure I have concrete facts now. Under "Clinical History" Abdominal pain/bowel issues/Wt loss. R/O Celiac. Findings: Mild gastritis. EGD. Not sure what to make of that. Under "Final Pathologic Diagnosis" A. Duodenum Biopsy; Mature benign small bowel mucosa with a normal villous architecture. B. Stomach Biopsy; mild chronic gastritis, Helicobacter Immunoperoxidase stain is negative for Helicobacter organisms(Controls appropriate.) c. Esophagus Biopsy, Chronic Esophagitis with Rare Eosinophils. ------- If anyone can decipher and elaborate on any of this, I would appreciate it? Do I have Celiac disease? Anything else anyone notice to be relevant? Thank you!
  20. Denver area doctor

    I live near Denver, near the foothills and I'm looking for a Doctor that either specializes in Celiac or has the disease him or herself. That would be amazing. I have seen 3 different doctors who all sympathize and kind of understand the list of it, but by no means are fully understanding of this. I feel like I'm always telling them why I can't just take any medicine, or do this or that, or why I can't work in a bakery...this all stems from me having to do a lot of disability paperwork and never, ever having it filled out correctly. I was denied multiple times because of ignorance. I would really appreciate any help.
  21. Hello! Can anyone give me your opinion on my celiac test results? The nurse on the phone said everything looks okay, but I got a copy of the report and a few things were flagged! I am beyond confused and frustrated. I have been struggling over the last 2 years with TERRIBLE fatigue, headaches, joint pain, bloating, and constant stomach pain with weekly diarrhea. I've tested negative for RA as well as other autoimmune disorders. My doctor thinks I may have celiac and ordered a test, however I do not have a follow up appointment for another month. Here are my results: **IGM, QN, Serum: Ref Range (26-217); 270 (high) IGG, QN, Serum: Ref Range (600-1600); 961 IGA, QN, Serum: Ref Range (86-252); 248 **Deamidated Gliadin Abs, IGA: Ref Range (0-18); 20 (high) **Deamidated Gliadin Abs, IGG: Ref Range (0-18); 58 (high) tTG IGA: Ref Range (0-3); 2 tTG IGG: Ref Range (0-5); 1 Any insight at all will be greatly appreciated!
  22. Hello! I am new to this forum and i have few questions. First, when i go to school or to an resturant and eat there. What if it comes a very small portion of gluten like dust or something like that, and i eat that food will i die from it after a while? I eat in school everyday and once few weeks i eat out at resturants. Should i be worried? Second, Is there any people that have lived with this disease for like 80 years +, and still got "Glutened" once a while? I am super clean at home, my whole family have this under good control and everything. And i do not cheat. I always think that i will die, or get problems with my bones or starve to death. Or even get a poop bag. So Should i be worried? Btw, sorry for my English.
  23. Hi to any & all who read my post, and an advanced thank you to those who reply, My post may be kind of robust & lengthily, but please read until the end if you are able. To give a sort of "back story" here, I'll explain my situation in a nutshell. In November of 2014 I was diagnosed with a gluten intolerance by my allergist after recurrent, severe mouth ulcers and a bodily rash. I had a blood allergy panel, but NOT a Celiac specific panel, which ruled out other food allergies completely - corn, pea, chickpea, chicken, tomato, egg, milk, etc. My allergist suggested a gluten-free diet, which I adopted & have been adhering to since then. Recently, I've been acutely sick since August of 2016, so we're talking a year plus now. My symptoms began with a burning abdominal sensation, pain after eating, premature and uncomfortable full feeling, bloating, etc. My internist referred me to my current GI doctor where I was diagnosed with GERD (chronic acid reflux) , and prescribed Omeprazole, which I still take daily. My next appointment in February had me still feeling awful & my GI doctor decided to perform an upper endoscopy, which I did in March. He was looking for ulcers, evidence of bleeding or infectious disease, and Celiac. Mind you, I had informed him that I've been eating strictly gluten free for almost three years now. He claimed this really didn't matter? This has left me wondering. Anyway, the results came up empty, but I was found to have evidence of gastritis. Then came the rest of my symptoms - frequent diarrhea, bloody diarrhea, extremely greasy stools, stools that float, mucus in stools, unable to "wait" to use the bathroom (I.e. Urgency), alternations of diarrhea and constipation, weight loss, low grade fever, EXTREME fatigue, poor concentration, memory loss, cognitive decline, and my mouth sores have reared their ugly head once again. After I first went gluten-free, the ulcers probably cleared up for a good year at least, which was heaven on earth for me. Now, they're back with a ruthless vengeance. As we speak, I've barely recovered from one for a day or so, and I'm down with two more. You can't even make this stuff up. After I addressed these new symptoms with my GI, he was concerned I may have had Crohn's Disease or Colitis, so he performed a colonoscopy, which ruled out both conditions through gross observation & biopsy samples. Since colonoscopies can only read so much of your colon & terminal small intestine, I then had a PillCam to see the rest. The only results he could suggest was that I have a "slow bowel transit," so I was diagnosed with Irritable Bowel Syndrome. The umbrella term for all intestinal and abdominal suffering with no definitive cause. Summary of my bible here is that I'm still suffering greatly. The intestinal issues are really giving me poor quality of life, and these pervasive mouth ulcers are more than I can bare anymore with the pain, inability to eat, weight loss, etc. it's all a sick and harrowing cycle that I am caught in the middle of. In saying this, I'm almost curious that I could have Celiac disease that was horribly missed. If I had already been gluten free & a biopsy was taken it would appear as though I'm a healthy individual, no? I was informed you had to be eating a strict gluten FILLED diet prior to ANY testing. ALL of my testing was performed after I already went gluten free, which could have altered results horribly. I'm almost crazy enough to think that if this is the case, I'm going to eat gluten just so I can be re-tested because I can't go on like this anymore. Can anyone please clarify and/or suggest something?
  24. Hi everyone! I am a 23 yo female and was diagnosed Celiac in January 2016 and have been gluten free since then. My IgA levels are down to 4 and my Celiac is very under control. However, I recently have been dealing with a lot of unexplainable pain and discomfort that no one can seem to explain to me and wanted to see if anyone has experienced anything similar. For about a year, I have been occasionally getting severe abdominal pain that seems to be concentrated in my rectum. It starts by feeling overall icky, crampy and sort of like I have "twinges" in my rectum. It feels like maybe I need to have a bowel movement but I dont, and if I do it doesn't help the pain. So I feel bad, and then all of a sudden I feel like I am being stabbed in my rectum. The stabbing comes and goes but causes me to like roll around on the floor it is so painful. This sometimes only happens once and is over in 20 seconds, but generally it is an all day thing and lasts like 8-10 hours. These generally have been coming 2-3 times per month one day apart. They seem to come about every four weeks (not during my period or ovulation though) and naproxen and heat helps some, so I thought it was maybe OB/GYN related (they also started shortly after I switched for BC pill to an IUD) but I have seen two OB/GYNs and both have no idea and think it is gastrointestinal, maybe gas pain of some sort that is possibly triggered by hormones related to my cycle. However my gastroenterologist is also stumped and thinks its related to my uterus cause it seems to be somewhat cyclical. Anyway they're horrible and I can't figure out what they are, they don't seem to be related to what I eat (though I should probably start tracking) or a particular time of day. Sometimes they seem to come while I am exercising, but sometimes they wake me up in the middle of the night. I should also add that I have no GI symptoms involved with these painful episodes, my bowel movements seem completely normal, no gas or anything either. Also, the last two days, I have woken up in the middle of the night with the feeling of being bloated and crampy. Not painful per say but extremely unpleasant. Again, I'm not on my period so idk what is causing this, especially cause both times it woke me up and I am a deep sleeper. Now, for the last 30 minutes I have been having non-painful muscle spasms in my left lower abdomen. It feels like a flutter, if I put my fingers against the spasm I can feel it distinctly. Again it doesn't hurt, but feels weird and I've never had a muscle spasm there before. If anyone has ever had any of these symptoms before or has any idea what me going on I'd be very grateful! Is it possible its related to glutening? Since I caught my Celiac really early I don't really know what my symptoms of being glutened are, the few times I know I have been I don't get diarrhea but instead extreme bloating, acid reflux, and overall feeling really crappy and anxious. I have a whole host of health issues these days that have been causing me a lot of stress (I'm in medical school and don't have time for these debilitating pains!) and it would be awesome to have some answers. Thank you all, K
  25. Hi, Has anyone with celiac disease gotten a vasectomy and do you think it caused any problems for you with regards to autoimmunity? I'm considering getting a vasectomy and was reading up on possible risks. Generally these seem to be little to worry about, but I noticed that 60-70% of men develop antibodies to a protein in their own sperm as a result—an autoimmune response. The primary downside to this as far as I can tell is that it can mean infertility even if the procedure is surgically reversed... but considering I'd be getting a vasectomy to become infertile, that in itself doesn't worry me because I am certain I'm done having kids. What does worry me is the idea that having an autoimmune disease already might make me more susceptible to developing sperm antibodies and that these antibodies could have other systemic effects on my body since I will potentially constantly have immune complexes floating in my bloodstream due to a neverending immune reaction against my sperm, which of course continue to be produced post-vasectomy. I want to avoid provoking my immune system further. Thanks.
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