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Found 13 results

  1. I’m the parent of a nearly 15 year old daughter. 5 years ago we finally found something that made a difference in her pain. A natural doctor did a blood test showing her to be severely gluten intolerant. Regretfully, we did not know to test her for celiac before removing gluten from her diet. Without that diagnosis, many doctors have made us feel gluten intolerance isn’t that serious. Very long story. Anyway, after 5 years of strict gluten avoidance, we were on vacation and let our guard down. Served what we thought was rice, she ate a portion. It ended up being ORZO. Pasta that looks like rice. That night she was dizzy, faint, even developed a fever. She slept most of the next day not eating much at all thinking she was coming down with a cold. Then, severe stomach pain and headache. Then, she threw up everything she ate for a few days. Ready to take her to the ER, we realized it was gluten! Picked up some digestive enzymes, anti-nausea medications, ginger, peppermint, tea, you name it. Today was the first day she could eat proper in a week. Still having some discomfort. Joint pain starting now too. My main question is: Is this typical for just gluten intolerance or does it sound more like celiac? She has been severely vitamin d deficient taking as much as 10,000 iu a day in liquid D and never bringing her levels to normal and menstral cycle never regular although she started at 10. Goes for months without and then when it does come, crazy heavy lasting weeks. Doctor still wasn’t horribly concerned. Just exhausted trying to be our own doctor. Insurance constantly changing making us look for new doctors. I wish I was rich. So expensive and frustrating having to try to get enough bedside time with each new doctor to reexplain her whole journey. Any information appreciated. She was doing much better by strictly avoiding gluten all these years but this last episode has me researching again to do what I can. Again, what do you think? My gut says “Celiac” but I guess we might not ever know for sure.
  2. Hi everyone. I am new here. I don't know where else to turn. My 10 year old daughter has been having severe stomach/abdominal pain for the last 3 weeks. First she was diagnose with a UTI at an ER after her pediatrician said she had a sinus infection (seriously?). She was on antibiotics for that but she continue to have severe pain by her belly button down toward her right side of her stomach, where she could not even walk to the restroom. We took her back to the ER and they thought it was her appendix but the MRI could not see the appendix. She did not have any other symptoms of an appendicitis so the ER released her. Again she went to the ER for a third time due to pain and they said she was constipated. Gave her an enema and she felt better. The next day, the pain was back. Its a burning pain that feels like something is pushing through her stomach trying to come out, is how she explains it. I did take her to a GI specialist which we are seeing again later today. All the blood lab results are normal. Except dairy, wheat and egg. They have an 0/1 next to it. What does that mean? Is she allergic to everything? She is schedule to have an endoscope on Friday. I hate that she is going through this. My wife and I are lost and devastated about all of this. Any help or suggestions will help. Thank you for reading my post.
  3. Hi, I'm new on here and wonder if anyone can help with what to ask gastroenterologist at my daughter's next appointment. My daughter is 6 year old, she has always been slim (around 2nd to 9th percentile) but has now dropped to around.0.4 percentile for age. She has been complaining of abdominal pains, nausea and bloating on and off for almost 2 years. She was originally tested by blood test (negative) 2 years ago and referred to ent for large tonsils and probable sleep apnoea. She had sleep studies and they decided symptoms were not bad enough to remove tonsils. She was having a lot of tonsillitis but not for past 2 years. She is eating more in the past 18 months than she has for many years and we are encouraging her to eat as much as possible, full fat milk, supper, lots of snacks, peanut butter, ice cream etc. She still fails to gain wait and has daily stomach pains, she is now complaining of dizziness for 6 weeks and no doctor can give us a cause. She was anemic 2 years ago but resolved with iron. She saw a gastroenterologist 2 months ago who did further bloods which came back negative. I should say at this point my father, uncle and cousin have coeliac. The gastroenterologist has sent her back to ent for possible removal of tonsils. We do have a review appointment with gastroenterologist in 2 weeks. The paediatrician who monitors her weight wants to push for an endoscopy, should I push for this ( obviously don't want to put her through this unless I have to), should I try her on gluten free diet, what questions should I be asking the consultant? Anyone have this experience with a child? Many thanks to anyone who can help
  4. Hi All, I’m new to this whole world of celiac and wondered if you could give me your opinions please?! I have been having on off stomach pains for about the last 5 months. They started to happen once every couple of weeks, then once a week and now literally every other day, sometimes every day. It’s quite a crippling pain that literally bends me over double and nothing gives me any relief. It usually happens within about an hour of eating, but not every time I eat. Along with this I have been constipated for a while and in the last 2-3 weeks on off had a feeling of a big lump in my throat when I try to swallow (I actually thought I was getting tonsillitis until it kept happening and then just goes away!). My stomach is bloated every night also. I am always quite tired, but just put this down to the fact that I find it quite hard to switch off at night and actually get to bed, so don’t get that much sleep, but always feel shattered in the mornings. Anyway, initially they it was thought I had a stomach ulcer (I only told them about the stomach pains as I didn’t think any of the other symptoms were even really symptoms I guess!). They gave me antacid medication, which did nothing. Saw a different doc and told her my other symptoms too and she said it sounds like I could be celiac. This was never even on my radar, so I was really surprised! Everyone I know who’s had it always has diarreah and has lost weight. I’ve not done either and I would have thought my stomach would hurt every time I ate gluten, not just some of the time? Has anyone had intermittent stomach pain and ended up being celiac? I’m waiting on my blood tests, which should be back at the end of the week. TIA x
  5. I am so confused and don't know which way to turn now. This is rather lengthy, but please bear with me to get to my dilemma. Several years ago when I was having flares of stomach pain, my doctor originally thought maybe it was diverticulitis but no test was run at that time. I didn't think the symptoms matched up to that and took myself off gluten for awhile. All of my symptoms seemed to improve (I had other symptoms) but without a diagnosis, I wasn't sure. So I asked the doctor about doing a blood test for Celiac. I was told to go back on gluten for the test but I was only back on it for a week or two when he did the test. Of course it came back negative. He had wanted me to have a screening colonoscopy anyway, so I asked him to do an endoscopy and biopsy at the same time. He did, but I found out afterwards that he only took one specimen and checked for H. pylori, not Celiac. The colonoscopy did show a couple of diverticula. So I took myself back off gluten but cheated from time to time. Then I would hurt, so I finally stayed off gluten. I got better over time and even have stopped having migraines. I changed doctors and my new doctor offered to test me, but I didn't want to go back on it for the test. We did do the gene test, which was positive. She made the diagnosis of Celiac based on that along with my symptoms and improvement by removing gluten. Here's why I'm confused. I recently thought I would like to do the challenge to get a definite diagnosis. I ate real bread and other things for 3 days in a row with no reaction. But then I got to thinking that maybe it was just because I had healed and I was afraid of causing new damage. So I stopped the challenge. Now a couple of weeks later, I've had the same stomach pain I used to get but haven't knowingly had any gluten. So could my problem really have been diverticulitis all along rather than Celiac? Should I go ahead and do the gluten challenge to be sure? I don't currently have insurance but I could probably pay for a blood test, just not an endoscopy.
  6. I hope I’m posting in the correct place... I’m looking for answers for my 84 year old grandmother who was diagnosed with celiac disease about 8 years ago. Her health was beyond poor when she was finally diagnosed, and though much better, she still continues to struggle in many ways. One of the most troublesome symptoms she experiences is SEVERE pain in her lower right abdomen, through to her back. And this is not a woman who likes to admit she’s in pain, or has a low tolerance for such. If she says it’s bad, it is. Today it was so bad she actually went to the ER. Something she avoids at all costs. But I know she’s frightened they’re missing something serious as this is not her first time with such pain. In fact, she has had this off and on for years now, though it has become more severe/frequent. I just kept thinking this is related to her celiacs disease, as I know for a fact she is not strict about her diet. She had an ultrasound today. Nothing. She’s had multiple scans, etc over the years. Nothing. Typically they tell her she has a bladder infection and put her on antibiotics. But she does not have a bladder infection every time the attack’s occur. She also had her gallbladder removed long ago. I hate watching her suffer with no answers. I’ve sat in the ER with her in the middle of the night while she’s moaning in pain. Could this possibly all be from her celiac disease? Does anyone else get severe pain through to their back? I’d so love to be able to tell her that it could all be the result of her not being strict about avoiding gluten. That there is a relatively easy solution..
  7. Hi guys! I'm new to the site - apologies if I'm posting in the wrong place or something Female, 18, diagnosed about 4 years ago now. I was a completely silent celiac, and while I had problems with other foods, pasta and gluteny foods were pretty much the only thing I trusted to not cause me any symptoms. Obviously I was very wrong, and I've been keeping gluten free ever since! However, a couple months ago I started having some pretty odd bowel movements. (Here comes the tmi stuff, I'm sorry in advance..) At first it was constipation, and when I did poop it was small, loose, floating, greasy, and yellow. I was also having some upper abdominal pain so I thought it was a liver problem and got checked out - doc said my liver felt inflammed but an ultrasound showed nothing was wrong. Then after a while ito became more solid and less greasy again, but the switching from constipation to loose floating and non-floating stools remained. I still experiended a lot of yellowish mucous however. Now, the last few weeks, they'very turned much much paler. Sort of a light beige-grey. The yellow mucous is still present. I've been having intermittent abdominal pain as well. Both near my liver on my upper right abdomen wrapping around a bit to my back, and a little further down on the left side just above my hip bone. I've also had quite a loss of appetite, and I have nausea that comes and goes. Today, it's sort of turned into a pale yellow/grey mush... there is still yellow mucous present. My stomach feels rather sick, but it doesn't feel like a flu or anything like that. I'm not going to the bathroom all that frequently, but again it's either a constipated feeling or an urgent need to go, back and forth (though the stool is always soft). Sorry about the grossness of all this. Basically, I was wondering if it's possible that I haven't been careful enough recently? Even though I never had any symptoms from gluten before, is it possible that I'm being contaminated somehow and it's causingredients all theset symptoms? I've also been incrediblyou fatigued and weak for the last few weeks but I'm not ill in any other way. And i've been drinking plenty of water. I should also mention that my other food problems don't cause this stuff either. The other intolerances cause severe pain that starts in between my lower ribs and then just kind of spreads throughout my whole body, makes me very very weak and lethargic, makes breathing pretty difficult due to pain, causes my whole abdomen to swell, and lasts between 1 hour and 8 hours. (Triggered by any green vegetables, leafy or not, as well as bananas, pineapples, tofu, lentils, and avocado. I'm also a pescatarian) Anyway... thank you for taking the time to read through this, and any advice would be very much appreciated. I'm getting pretty concerned, and, though I haven't checked, I seem to be losing quite a bit of weight. It's just so terrible to feel so weak and sick all the time, every day... I'm glad to be part of the site now, though! Thank you!
  8. So i am undiagnosed and have been having severe problems for about 9 months. Ive had stomach problems my whole life. i had a small part of my bowel removed when i was a newborn and had a colostomy bag for 6 months but recovered. I was always active as a child and teen but still had problems, but nothing like this. So now I'm 21 and one day i got really sick in a car and it all started from there! Got very dizzy and wanted to puke. But then i started to have abdominal pain, bloating and bad chest pain. I thought it was a bug and let it pass but it went on for weeks. Then i got constipation and started getting very fatigue and weak. Could barley got to work. One day at work i started having suck bad lower abdominal cramps that they wheeled me out on a cart because i could not walk. I went to the er that night after they went away but since then i have had a lot of symptoms. Mostly lower abdominal pain around my pelvis.( By the way I'm a 22 year old male) . But i have been having bad fatigue, arthritis in my fingers when i wake up, severe abdominal pain that only goes away on occasions, testicular tenderness mostly when I'm constipated, severe stress mostly because of my sickness, bad mouth ulcers, and I'm sure there is a lot of symptoms I'm missing but i have been to doctors and even had a colonoscopy which came back good but I've never been tested for celiac or crohns that i know of. Sometimes i really feel like i dying, the depression had led me to hate everything. I can't really enjoy my wife and kids anymore, can't go out anywhere and have fun because I'm always sick. Im going to see a new family doctor this thursday and try to get some test ran but does anybody have symptoms like me and does this sound like celiac? Help me please i just want my life back. Also i have recently gotten itchy bumps on my hands, wrists and inner forearms and on the right side of my neck( kinda like bug bites all over).
  9. About a year ago I had been having a lot of digestive issues off and on for several weeks. I was tested for Celiac by blood test. I had gone off gluten for a while, but when I found out I had to be eating gluten before testing, I went back on. I was only on for about 1-2 weeks before they did the blood work. Here are my test results: No serological evidence of celiac disease. TISSUE TRANSGLUTAMINASE AB, IGA Result: 1 Reference Range: <4 U/mL IMMUNOGLOBULIN A Result: 158 Reference Range: 81-463 mg/dL Then I had an endoscopy due to mucus issues I was having, but the doctor didn't biopsy for Celiac while he was in there. I took myself off gluten and red meat last fall. I'm not sure which one helped, but I quit having the stomach pain. So a few days ago I attended a wedding and decided to eat regular food at the reception. I had both red meat and gluten (2 dinner rolls and small piece of cake). The next day I had the old stomach pain. Then the day after that I developed a stye on one eye and a small rash (no blisters, just bumps) on the other side of my face. Since I indulged in both red meat and gluten, I have no way to be sure which one caused me a problem. I periodically get a blistery break out on my right hand and have had it break out on my forearm. But it is never widespread and is always in the same area. I get an occasional bout of a bump or two on my face which is not a blister but does tend to ooze a little liquid sometimes. I also get itchy underarms with little bumps but no blisters. When I was a kid, I used to break out with a red rash behind my knees, which I was told was an allergy, but never was told to what. What I would like to know is if any of this sounds like gluten intolerance? I'm not sure that I would consider myself Celiac and I'm not wanting to go back on gluten to be tested. Would it be worth the money to do the DQ2 and DQ8 testing? Thanks. Kathy
  10. Hey everybody, so I have a friend (female, 20 years old) who has NOT been diagnosed with celiac and does not think she is allergic to wheat but is having severe tummy issues. symptoms and factors: shooting stomach pain immediately after eating anything nausea and pain for almost 40 minutes after eating unintentional weight loss (30 pounds in 1 month) high stress environment on medicine from doctor (to coat her stomach throughout the day) long term, 8 months... Whenever she eats anything, for almost 8 months now, she experiences nauseating shooting pains that go through her stomach immediately whenever she eats anything. Her doctor put her on a medicine that coats her stomach throughout the day, so she takes it every morning before she eats, and it is the only way she is currenty able to eat. Since this began she unintentionally lost 30 pounds in a month and continues to loose weight. She is in college and taking many hard classes so stress could be a factor. She has not had a scope to look at her stomach to check for ulcers because she can't afford it right now. I got her to start trying kefir and see if that helps. Does anyone have any ideas or suggestions!? It would be super appreciated, any imput is really awesome! Thank you!!!!
  11. Hey all, I've been diagnosed celiac for about a year, and until recently, was living fine with the gluten-free diet. About a month ago, I started noticing stomach aches after drinking breakfast shakes, and eating cheese. I found out that dairy intolerance often comes with celiac, which would have been fine as well, except around the same time I started having stomach/abdominal pain after eating almost anything. It started with gluten-free/DF homemade chili, then gluten-free chicken fried rice, and before I knew it I had to cut almost everything out of my diet. For the last 3-4 weeks I have been eating exclusively raw fruits/vegetables and poached chicken/turkey breast. Literally everything else that I've tried to reintroduce has given me abdominal pain. This includes all types of nuts, white rice, eggs, cod, salmon, peanut butter, even oven-roasted vegetables. I usually start feeling discomfort/tightness in my stomach around 30 seconds to a minute after eating any of these things. Despite eating 2 avocados and 1-2 chicken breasts a day, I'm not getting enough fat in my diet, and have lost about 15 pounds (down to around 120 lbs. as a 6', 21 year-old male). I recently spoke with my dietician who recommended that I start trying a low FODMAP elimination diet. Thankfully, most of the things I had to eliminate were things I already couldn't eat anyways. However, this limits my diet even further, and I can't even tolerate most of the things that are supposed to be okay to eat on this diet. I have noticed no improvement since starting this diet, which leads me to believe that there is something else going on. I have been taking multi-vitamins and probiotics daily for about three weeks but am currently losing hope, as none of my doctors/specialists have been able to give me a solid answer. The doctors that I have seen don't accept leaky guy as a legitimate medical condition and have sent me to a few different specialists instead, seeming generally clueless themselves. I am having a consultation for a colonoscopy soon, as well as for a cystoscopy (I apparently also have some sort of kidney/bladder blockage, maybe a stone. We're not sure if it's related to any of this yet). I have seen a naturopath and a dietician, but neither of what they've told me seem to be doing anything to solve the problem. I feel worse every day, low energy, irritability and a general feeling of tiredness are pretty much constant and it's becoming difficult to deal with school as well as other commitments. Does anyone have any insight as to what could be going on with my body, or at least some general advice on what to do in my situation? Let me know if you'd like any more information. Thanks for reading, and for any input you may have. Matt
  12. Hi everyone! I was wondering if maybe you beautiful people can help me? But first let me tell you my story. My problems began at the very young age of 3 months. I would hold my breath and only let go after awhile. My mom doesn't know the precise amount of time because to her it felt forever. I continued to do this for the next few months. Only be diagnosed with "She's a stubborn child, that's all. She'll be fine." Keep in mind this was 1991 and in South Texas. I went through the next few years okay, with the exception of fluctuating weight. At the age of 12 during an all star softball game I began to feel as if I would faint. Cold sweats drenched my body and I tried to wipe the dizziness away. After my at bat (which I struck out) I told my coach I could not go back in, I wasn't feeling good. My mom came over to take a look at me and saw that I was pale with color also leaving my lips. People began giving me candy and Gatorade, thinking I had low blood sugar. I began to feel somewhat better just now with a stomach ache. By the next day I was good as new. Then at 13, I began to feel a slight burning in my chest. My mom took me to the doctor and I was diagnosed with heartburn. With that appointment I also was told to see in a cup. It came back that I had a bladder infection and I needed to lay off the soda. After two weeks with minimal soda I came back for another and was given the same results. I decided I would give it up completely. I was proud of myself, I went one month without soda! I had only consumed water. I went back and same results again! I was tired, I didn't want to go back. That was that. During high school I would complain to my mom that I sometimes felt like I was in a dream.Like in a fog or a daze. Other than that I was fine. I approached college, and I began to get stomach pains. I went to the doctor and had many scans done and the next thing I knew I woke up with no gallbladder. Till this day the doctor has never explained why he took it out. The pain continued on and gradually got worse. My sophomore year of college I found another doctor who wanted to check out my blood level, see how I was doing. She called me the day after with a worried tone telling me my atlases and liaise enzymes were through the roof. Along with low b12 and D. She asked me how I was feeling and I told her besides some stomach pain,I was alright. She began to check me every 3 months getting the same results. Only a few times were the pains in my stomach so unbearable I cried, almost calling the ambulance. I decided to stretch out on my floor and focus on breathing. I fell asleep. My senior year of college my left eye began to hurt. Next thing I knew my vision began to blur, this was my first migraine. Went back to the doctor, where she told me I was under a lot of stress with graduation coming up and all. I was like, "Yeah she's right, she's the doctor." I left it at that. Meanwhile I had another check up for blood work. Again the next morning a nurse called me with the results worried cause my levels were high. By this time this call was normal for me. They would be high but no doctor could explain it. They would also tell me while my pancreatic enzymes were high, my b12 and D were getting lower, upping my dosages. Though I would stop taking them because I would get sick. This leads me up to now, same blood results high atlases and liaise and low b12 and D. But this last visit a new one occurred, low iron. I have always had cold hands and feet, yet now I feel cold all the time even when outside sometimes (and I live in TX). I hope you all can help me, please? Thank you!
  13. Sorry for the long post in advance... I've been experiencing bad stomach pain for about 6 months, and other symptoms for about a year. My other symptoms include rib soreness, feverishness, nausea, fatigue/weakness, and headaches. Come to think of it, a few years ago, I had some bad bouts of stomach pain that I think was brought on by, or at least partly, by my anxiety. I notice that the pain comes on/increases when my anxiety increases. Eating also can bring it on. I've kind of noticed that dairy (I was tested a few years ago for lactose intolerance, but results said I'm not) and gluten foods seem to upset me more, but they're in a lot of things, so perhaps not. More recently, in the past few months, the pain seems more often after eating than it ever has been. The pain usually happens mostly at nighttime. Back in June/July, I had the worse stomach pain I've ever had. It was a tight, crampy, achey feeling. It felt like something was wrapped very tightly around my stomach/waist/ribs. I had blood when I went to the bathroom once, and it helped a little to relieve the pain when I used the bathroom, but not much. I've been having problems with normal bowel movements, both constipation and the other. That most extreme time, it hurt to move. I felt better resting my head on my knees while I sat at the edge of the bed. It was excruciating... I went to an urgent care place the next day, it still being really bad, but slightly better. They said I could possibly have Crohn's or IBS. It hasn't been that kind of painful again, thankfully, but I've been having more burning pain, rib pain, feverishness, tightness, chest pain, and trouble breathing. I've also had some pain on my lower sides. I recently went to the ER because it hurt to move (I had eaten, then felt the pain on my lower sides, then stomach/rib pain, trouble breathing, dizziness, and nausea). They gave me meds to relax my muscles, took my blood, but wouldn't do an ultra sound or anything. I also just saw my doctor. I mentioned that Celiac runs in my family. She told me a blood test is kind of pointless unless I really wanted to do it. She told me to go gluten free for 2 weeks, and if no results, then I have to see a GI. The earliest appointment is in January... Anyway, I've been gluten free for five days, and so far, not much improvement. I thought it was working at first because I didn't have as much stomach pain, but now it's basically back to normal. After anything I eat, I feel pain. I read somewhere that some people feel way worse after eliminating it at first, and then better. Any opinions? Thank you