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About beachbel

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  1. I am wondering how anyone else with really bad reactions is treated in case of gluten exposure. I was on vacation with my family and got a "gluten free" sandwich but the deli meat was not gluten free even though we asked. I was then vomiting for 2 1/2 hours, became delirious, had severe pain, dehydrated, asthma attack (I have asthma) and went into shock. I needed to be taken to the hospital by ambulance where I was then treated with nausea med, pain med and a large dose of steroid. The doctor there then told me to take 10 mg of prednisone per day for a week (I take 5 mg daily for adrenal insufficiency as it is). This is the second very serious reaction I have had but I think the steroid has made a big difference for me in that last time I was in the hospital for a week - this time I went home the next morning. I am still not feeling great but at least stable. Long story short I have learned to never eat out, even on vacation. My question is: what has worked for other people who have severe reactions? What have you been treated with? Thanks, beachbel
  2. Hi! I am wondering if anyone else out there is has refractory celiac disease. I have been diagnosed for 3 years with celiac and did not respond to diet (even when my only diet was from tube feeding). I am currently on tube feeding because of a major flare up. I would like to hear from anyone else and what they are being treated with. I am treated with steroids and elemental diet. It is hard because this is so rare that sometimes the drs are unsure what to do. Thanks in advance.
  3. I don't know anything about your area but I used to get Domperidone online from a pharmacy in Canada. It was cheaper too. You might want to check into it. The pharmacy just has your dr email a prescription.
  4. It seems the refractory celiac dx is not an easy one to make, and my doc is still getting to the bottom of it. I have had a few endoscopes this year all showing the villous atrophy and inflammation. Along with that I have had worsening symptoms. I get really sick whenever I eat anything and a lot of pain, unrelated to the gastroparesis. I did get better for awhile while on Entocort a steroid. When the doc took me off the Rx because I was doing good, I had a major relapse. All of these things along with a lot of tests (process of elimination) has lead the doc to refractory dx. He is talking about sending me to the Mayo clinic now if things don't start improving. I keep hoping that if it is truly refractory celiac that we have caught it in time and can get it into remission before lymphoma develops. The Iberogast seems to really be helping me with the gastroparesis. My symptoms are not gone but improved. Another good resource for gastroparesis is at with the motility or GP support group. I have found a lot of good info from other GP sufferers. Some of them have tried the electric stimulator and you could ask specific questions from them.
  5. Hi! I too have gastroparesis and refractory celiac disease. It is a fun combo. I have been dealing with the gastroparesis for a couple of years now. Right now, I am getting botox injections about every three month to open the pyloric valve which allows the stomach to empty easier. It has really helped! I might consider a pyloriplasty in the future (a surgery to permanetely open the valve). The doc also has me trying Iberogast from Germany (you can buy it here in the US). It is an herbal supplement that helps many people with GP. Other things that have helped a little is eating mints with peppermint oil (it helps with nausea ) and also sea bands that you wear on your wrists. My doc also had me try Domperidone (an Rx out of Canada) that seemed to help but I developed a sensitivity to it but for some people it is a nice alternative to Reglan. Unfortanately, the real problem for me right now is the celiac disease. I have a feeding tube to help me get my nutrition. I just found out I am slightly allergic to soy so I am eliminating all sources to see if it helps. I am also lactose intolerant. The doc told me to just avoid dairy and not products made with milk, but I think I am going to avoid those products to see if it helps. Well, maybe those ideas can help someone. Good luck everyone!
  6. I would suggest a couple of things you might try. First, if it has been awhile you might want to see your GI about a blood test and possibly an endoscope to check up on your celiac disease since you are having so much absorption issues still. Another really common thing in celiac disease is hypothyroidism which makes you feel really tired. It just takes a blood test to check for it and can make a huge difference in how you feel. Good luck.
  7. I am hoping to hear from anyone else who has clinically diagnosed Refractory Celiac Disease to see what treatment has helped, or not helped you. I have Type I, Refractory celiac disease and I am being treated with steroid therapy. I am also considering an elemental diet, formula diet, since eating anything makes me sick. Anyone else out there with this problem? I know it is rare and I am finding it is extremely hard to find info on. Thanks.
  8. Hi trents, I have refractory sprue. I have had 8 endoscopes in the last two years (about every 3 months) because of the complications and trouble it gives me. I have been hospitalized for it as well. I am treated with Entocort - a steroid - to control my symptoms and calm my immune system down. I am meticulous about avoiding gluten. I never eat out because possible cross-contamination, I keep my dishes separate from the rest of the family, cover my food in the microwave, etc. Even the slightest cross-contamination makes me sick for 5-6 days. When I am on the Entocort I feel much better. The diagnosis of refractory sprue was made based on some biopsy results. Last year when I was on Entocort my biopsy stilled showed some celiac but looked pretty good so the dr had me try going off the medicine. I got sick again about a month later. The dr followed up with another biopsy when I got really sick and found that my celiac disease had really kicked up again. So I am back on the steroid. The doctor has told me I need careful monitoring to watch for cancer. I am still looking for information on treatment options. Do you have any specific questions? I would be interested in hearing from anyone else who has refractory sprue as well. Are you having any symptoms along with your positive biopsy? If you are I think you should definitely follow up with your doctor and monitor it carefully. Good luck.
  9. Thanks! It's nice to hear that the celiac might be the culprit. He has only been gluten free for a month and his appetite has dramatically improved. It will be interesting to see if his learning does also. Thanks for the replies.
  10. Thanks to all who have responded. I think we will have my son tested to make sure we are not missing something, but it seems this could be celiac related. Again thanks for the info.
  11. Hi! My son was diagnosed with celiac and lactose intolerance a month and a half ago. He is doing well on the diet. I am wondering if there is any connection between kids with celiac and learning disabilities. My son's teacher thinks he should be tested as he has difficulty retaining information. He does not seem to have any attention or behavior problems. He is seven years old. I appreciate any info anyone might have. Thanks in advance.
  12. Thanks for the feedback. We are definitely leaning towards putting my son on the gluten free diet. I guess it won't hurt whereas if I leave him on gluten it could cause damage. He prefers gluten free food anyhow.
  13. Hi. I'm looking for suggestions on my son's situation. He is seven years old and had a low positive blood test for celiac disease ( His Ab, IgA was 20 with a range of over 19 positive). I should mention that is IGA was low (50 with reference range of 51-259 normal) which the dr said can cause the Ab, IgA to be a false low too. So we had a endoscope biopsy done. I just got the biopsy results yesterday. The biopsy found he is lactose intolerant and it also found inflammation but the dr said it isnt inflammation that is typical of celiac disease. So the dr gave us two options. First, I can put him on a lactose free diet and then if that doesn't clear up his symptoms, put him on a celiac diet. Or the second option is to put him on a lactose free diet and then have him re-tested in a couple of years for celiac disease while monitoring his symptoms and growth carefully. His symptoms are constipation, foul smelling bowel movements, and he prefers to avoid gluten and milk products ( we did make sure he had plenty of gluten for the 6 weeks prior to his biopsy). I should mention that I have celiac disease and have a 14 year old son on the celiac diet. My 14 year old had a higher positive blood test and more symptoms, including stunted growth; his biopsy was completely negative. Even though his biopsy was negative, the dr had us put him on the celiac diet because of the severity of his symptoms and he is responding well to the diet. The dr is still checking him for other conditions since his biopsy was negative. So, does anyone have any suggestions? It seems my boys have fallen into the "gray" area of diagnosis and I want to make the right decision. Thank you in advance.
  14. beachbel

    Very Very Sensitive To Gluten

    Hi, I know how you feel. I have been gluten free for almost 2 years and still test positive because I react to the tiniest cross contamination. I know other celiacs who don't have to be nearly as careful as I do. If you are getting that sick you might want to talk to your doctor. My GI put me on a mild steroid for a few months to calm my immune system down. My GI tract is starting to heal now and my symptoms are controlled. Just a thought. Good luck.
  15. Sorry, I didn't mean to lead anyone to believe I am looking for a diagnosis. I am just trying to understand if the proper blood tests have been run as there has been confusion on that even with my doctor. I appreciate all the ideas everyone has given, as my doctor has even been looking for ideas too. I have had two dieticians look through everything I eat and do looking for the culprit gluten and nothing has been found. Again, thanks everyone for the ideas and info.