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Everything posted by acod

  1. Abdominal Pain

    Hi Was she free of pain when she was on her first month off of gluten? Unfortunatley, my son (who is 12) still has constant abdominal pain, albeit less than it was...and he has been gluten free for 4.5 months...so, sorry to say, it can stay around. He also struggles with limited bowel function. The Glycolax that we took for 2 weeks, only produced 2 BM in two weeks. Finally he is up to 2 BM's a week, and we are working at getting his system more active. It is like he has no peristaltic motion. Anyway, what we do is try and give him lots of food based fiber and TONS of water. He takes a walk every day too. It seems to help. We also use GI yoga positions to help relieve some of his pain. Unfortunately, we know that some of the pain is due to "back-up" and other is that fact that he still has lesions. it is taking a long time for his numbers to come down. Yoga positions: Kneel on the ground and then fold body down onto knees, putting your head down between knees. Extend arms out behind you, laying them next to each leg. Relax and hold. Breath deeply for the count of 30+ Lay on your stomach Gently arch your back, lifting head and feet Lay on back Arch back up and put hands as fists under the small of your back Other Positions that may help: Lay on back, bring knees up to chest and do slow bicycle action with legs Hope this helps
  2. thanks for all of the suggestions. I think simplifying and reducing his diet is probably a really good way to go. He loves food, and finds the only joy in the day from food, so it is tough, but we will try. RICE GUY: If I may ask, "Do you use the magnesium for constipation or lack of "going"? I am just so interested in finding a way to help my son. He drinks tons of water and we give him lots of natural fiber, but things really just don't move. We try and walk too. Another thing came up today...his tTg titers are still, slowly coming down, but his EMA went back up high. Wonder what you think of this? Thanks again
  3. Hi Rice Guy, My original post got cut off, and in that, I had mentioned that we did use the magnesium Natural Calm (something I learned about from this forum). After 2 weeks on that, our son got really bad acid reflux and his GI thought that the magnesium was acting as a muscle relaxant, and had the sphincter to the esophagus, wasn't working properly. Ever heard of such a thing? While on that, we didn't see much change. Is it something you have had luck with over the long term? We did try probiotics early on as well, but again, after 1 month, no real change. I wonder if we need to give things a longer chance to work. Your thoughts are always appreciated. Funny, I had always thought that bananas were good for diarrhea, not constipation. Do you know what it is about green bananas that helps with no movement or bowel action? thanks
  4. Thanks for your reply Bunny. I forgot to mention that we did 2 weeks of probiotics early on, and he takes Fish Oil daily and has since October. But perhaps we should do them again. This is such a mystery. He can't tolerate lactose/casein yet, so we haven't done yogurt. I hope that his intestine heals in a way that allows him to have yogurt again. take care
  5. Hey there My son was diagnosed with celiac in November after an extreme stomach flu. He has been gluten free for 4 months, and continues to have symptoms, and does not really feel better on the gluten-free diet. His last blood test showed that his blood titers were down, but not normal. Upon his initial diagnosis, his intestine was completly atrophied. One of his major symptoms throughout the past 5 months is the lack of bowel movements. He has one to two a week, at the most. We have tried many different treatments for this, but are wondering, if any of you wise, experienced folks can lend us some new ideas. Treatments: acupunture and herbs issues: He loves to eat, but, where does it go? His abdomen and intestine are in constant pain. He was tested and treated for intestinal bacteria overgrowth, and after that treatment, there was no real change.
  6. Hi all Thanks for all of the suggestions. our son is slowly, progressing in a positive way. We have softened his diet and we was all of the time. We are also working on healthy mind activities as way to distract him during this very difficult time. We notice that he is more mobile and happier more times in the day, but he still clutches a pillow and can't sit up for long, because of his stomach. As the cosmos would have it, his Tutor is gluten intolerant, and is very conscience of his situation, which is a wonderful gift, and one less thing to think about....and I hadn't, so thanks for the idea. The same goes for the books he gets. That is really tricky and I am going to wipe them down now. Wow, this disease takes true detectives. Thankfully, this forum provides a great deal of wonderful sleuths. Here's wishing you all good health, and thanks again for reaching out and sharing. We are hopeful that our son will be feeling stronger by summer! His doctor told us today that she thinks it will still be a few months, given his very high titer level and it's very slow retreat. peace
  7. Our son has been gluten/soy/dairy free since Dec. 1. Unfortunately, he is not really progressing at all. His last blood work (Feb. 26), showed that his antibody titers were coming down, but he is still extremely disfunctional. He is in severe abdominal pain and has one to two bowel movements a week. He shuffles everywhere because it hurst so much to walk. I have written about him in other posts, but what we want and need to know is how long does it take to become more functional? Did many of you suffer for a long time, once going gluten free? In his case, his symptoms prior to diagnosis, were minimal, perhaps silent or non existent. We even think that the disease came on with a viral infection in October, and then got very bad. Blood work indicated malabsorption and very high antibodies (EMA and tTg). He is homozygous for the DQ2 gene, which we have read, may indicate the worse genotype for the disease. Does this mean that it will take longer to heal? Has or is anyone else progessing really slowly? We are very interested in talking to others that responded slowly or not at all to gluten free, and getting suggestions on other paths and timelines we should consider. Thanks
  8. Hi All this salmon talk made me want to share a new dish I have created and seems to go over well. Macadamia/Coconut Crusted Salmon Ingredients: Macademia Nuts (1/2 cup whole) Dried Coconut Flakes Coconut Oil Salmon fillets Lemon Salt/Pepper Garlic (optional) Egg (optional) Take a handful of macadamia nuts and finely chop them Add to them some dried coconut flakes (natural, no sugar added) Crunch that together with hands, or blend up in a mixture. You will use this to coat your salmon preheat skillet, add coconut oil so it is hot when you are ready to cook. If you like, mince up a clove of garlic and have it lightly sauteed in the oil before you cook your fillets Take salmon fillets (I often cut them thin, laterally, so they cook fairly quickly) wash and pat dry. Whip together 1 egg and juice of 1 lemon. (you can just use lemon and water if you prefer) and dip fillets into this liquid Take crumb mixture and coat fillets. With fish, I do this by laying out a layer of crumbs on a plate and then gently, but firmly laying the fillet on each side into the mixture Place fillet into skillet and cook each side until brown. Usually takes 3-5 minutes per side. Serve with baked fennel and asparagus This nut coating recipe works nicely with cod too! To bake fennel, just chop off the leafy tops of the fennel, and then thinly slice the base of the stalks. Place these into a lightly greased (extra virgin olive oil) glass cooking pan, dribble a bit more oil over the tops, sprinkle some salt and pepper and if you can tolerate it, parmesaen cheese and then bake for 40 minutes until tender. Very yummy licorise flavor that goes well with the nutty salmon. ENJOY
  9. thanks folks The suggestion to research the lab is a really good one and I have been researching them whilst hoping for replies. I also like the double allergy test. Good ideas. All food seems to bother him. Or his system is just in bothered mode. Having a starting place is what we need. What is the best way to start an elimination diet? We are thinking that perhaps it is an acid issue, and figuring out how to minimize that would be really good. He is just recently starting to have problems with reflux. What was probably confined to his gut has risen up to his throat which has been really burning and he hasn't slept because of this for the past three nights. we were taking magnesium for his constipation, or complete lack of bowel movements, but his doctor thinks that because it is a muscle relaxant, the sphincter to his esophagus has relaxed, which may be why he is getting the acid up in his throat now, and never before. so, we are going to take a break from the magnesium first to see if that calms down. We are cutting all acid inducing foods in order to help minimize this too. He really doesn't eat much of them, but he is now triggered. each day it is a new task, and progress is slow i know you all can relate thanks again and wishing calmness and health for all of you
  10. Hi eberbetty he was never diagnosed with gerd, nor did his endoscopy show any esophogeal ulcers. he did have ulceration down in his duodenum(SP?) i wonder if he could be developing an ulcer or gerd. he was tested for h pylori several months ago, but so much has been going on, things could have changed. thanks for the idea
  11. this mood thing really fits my son. he is so grumpy, irritable, sad, crazed, and in discomfort due to stomach pain and constipation, that he screams all the time. he acts like he is loosing his mind, and it is hard for him to communicate. However, since he has been gluten free for 3 months, we do see changes that he is slooooowly getting better. He has calmer days, more empathy, and feels bad about yelling at everyone. What I want to know is how long did it take those of you to regain your "balance" or social being, once you first went gluten free? were your mood swings a way of life before going gluten free or are they just part of it now, whenever you are glutened? Thanks for sharing. There is s much to learn.
  12. hi my son has been experiencing intense burning in his throat the last two days. Could this be a sign of "glutening"? If so, has anyone experienced this and have ways to calm it down? He has never had any symptoms of upper gastric juices like this before, but he does continue to have intense intestinal pain, so perhaps he is producing more than we know. He has been gluten free for several months, but has seen very little relief from this diet, especially when it comes to relieving his intestinal burning/ache. we are really trying to help him get some relief, but it is slow. one other thing...we have started him on a magnesium supplement for his constipation issues. has anyone heard of this resulting in a "burning throat"? thanks to any and all
  13. In our case, a fiber rich diet was and is really important to help with the constipation too. However, many folks equate a fiber rich diet with raw fruits and vegetables, which are hard to digest, especially with a "raw" intestine. What we had to do for our son, was really cook all the fruit and vegetables, which allowed us to still get a decent fiber content, but helped make digestion easier. So, I wonder and what they considered "low fiber". Good luck
  14. After being gluten free for 3.5 months, our son is still so very blue and is having a hard time seeing the light at the end of the tunnel. He continues to have intense, sporadic cramping and just feels awful all day long. How many of you have had emotional problems? Did they get better as the gluten was removed and the intestine healed? We know his antibodies are coming down, but we don't see much change in him. What are some strategies for lifting spirits and bringing hope into the picture? Thanks
  15. Our 12 year old son was diagnosed in November 2006 with celiac disease. He had positive blood tests and 8 biopsies that showed a complete atrophied intestine. We went gluten free on December 1, but unfortunately, his main symptom, intense intestinal pain, has not changed at all since going gluten free. We have worked very hard at getting gluten out of his diet and do believe that he is gluten free because his titers for TTg and EMA are coming down! (yea), however, his symptoms are not changing. The wild thing about all of this, is that he was normal up until October, when he got a bad stomach virus, that slowly escalated into a myriad of disabilitating and discouraging GI, emotional, and physical symptoms, all leading us to find out that he has celiac disease. It is has been so incredible to see symptoms in him, that I now read about from all of you. He has peripheral neuropathies, extreme iritability and depression, brain fog, and sore feet and legs. We think we have a good nutrionist and we are trying to support his malabsorption and constipation issues through diet and supplements, but our real question now is....might he have other food allergies in addition to having celiac disease? We are lactose/dairy free, and don't eat or use soy products, but we have not cut anything else out from his diet. Before starting an elimiation diet, and putting him through yet more diet based changes, we wondered what are some ways of determining allergies. I know that there are blood tests. which are the best? why? We have done muscle testing, but nothing came up except what I mentioned above. I guess the other issue is time. Perhaps we just haven't waited long enough....it is just so difficult so see your son, or anyone you love, in so much pain, and completely out of their normal life. We would really appreciate your feedback.
  16. For my son, who is 12, it took over 12 weeks for the stools to regain "normal" color. However he still suffers from intense intestinal pain. He is also dairy free. Good luck
  17. HI Paula My son has been out of school since October 20. For months he was unable to sit up and he screamed all day long. This is really crazy. His initial symptom was severe diarrhea for 3 days which then led to constipation. Initially we thought he had a virus, and then his stomach (intestinal) ache just continued to get worse and worse. It was through our persistance, and his not responding to meds, or clean CT (appendix) scans that led to us getting the Celiac blood work done. After the biopsy on Nov. 30, we went gluten free. He has had lots of other secondary symptoms. His BM's are infrequent, once to twice a week; clay colored, fatty and floating; he has neuropathies (tingling and burning sensations) along his arms, shoulders, legs and feet; he gets rashes on his face and lots of sores in his mouth, and he has become extremely irritable and depressed (which I can relate too completely). We have a homebound tutor that brings work, but my son has a hard time staying focused. He is very bright and the work is not at all stimulating, especially done in isolation. He wants to get his pain level down so he can go back to school and so he can sleep. He has not rested well for months. I can say that his BM's are starting to get to be a better color, but everything else continues. Hope you get help soon. It is best that your son be ingesting gluten before your he has the blood work and a biopsy. Best of luck to you and your son. This definitely takes a toll on the entire family.
  18. Thanks for the responses. THis is great. After reading them, I felt as if some more information may help out with questions you all might have. My son is 12. He is lactose and casien free. He was tested and is homozygotic for the DQ2 allele. From some of the research we have read, persons with this makeup often heal more slowly. We do not eat processed food, nor do we got out. Our son can't really sit up for very long due to his extreme discomfort. There is some suspicion of chrons, which we are working on getting a more confident diagnosis. All in all, the tests are somewhat helpful for diagnosis, not just treatment. We are thinking about going on the SCD diet. Thanks again and we look forward to more of your suggestions and experiences. It helps to have more folks to talk too. Acod
  19. Hi I am posting for my son who was diagnosed with Celiac in November, 2006. We have been gluten free for 12 weeks. We began by cleansing our kitchen of all all signs and history of gluten laden products and utensils, and embarking on a freshly made diet of organic gluten free foods. Throughout the entire process, my son continues to call out, day and night, in pain. He hurts in his abdomen, on both sides, just below his belly button. We have had 3 CT scans, and MRI and different blood tests checking for problems, other than Celiac. What we are wondering is, how many of you have suffered from intense, constant, and what is now, chronic, pain? How have you or are you coping? We have seen pain psychologists, acupuncturists and try and do some yoga each day, but none of these have given him relief. Perhaps we need time. If you have any experience or history like this, please share your story and your suggestions. Thanks so much ACOD PS: His last blood test (taken at 8 weeks) still showed high levels of antibodies. His endoscope showed complete atrophy of his intestine.
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