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ann72601

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Everything posted by ann72601

  1. I appreciate the replies. I know that DH, or gluten rash is common but I didn't think about how I was getting sick so frequently until I thought about the fact that it's as direct and entry into the system as the mouth. I think we're all on a learning curve, including the doctors. From now on I will be keeping gloves to handle anything in the bathroom and kitchen, AND I will check with the manufacturer on any medication prescribed. She still thinks that it will be listed in the PDR if it has gluten or that the pharmacist will be able to tell me. I will always have my meds compounded from now on too. Livin' and learnin'!! Thanks again!!
  2. Just curious about this topic: I have DH on my hands and there are often open sores. Can gluten enter into the system that way?
  3. I'm needing to know if a single pill prescribed by a doctor can cause a reaction if it has gluten in it? I can't find any brand that is gluten-free and my doctor 'doesn't believe' compounding is needed. Thank you.
  4. It's not uncommon for celiac to come as a package deal. SCD diet is a good choice and so is GAPS. Both have online summaries that you can view. I had the same experience of the gluten-free not working after a time and other issues surfacing. Don't give up. www.gapsdiet.com and www.pecanbread.com or www.breakingtheviciouscycle.com. Take care
  5. No, it's actually severe constipation.
  6. My complete diet for the last weeks is listed on my original post. That's why I was stumped.
  7. I sound like everyone else here with a garden variety of illnesses on top of illnesses too depressing to put in print. I have been doing the GAPS diet for almost 3 months and very slowly starting to make a bit of progress. I was told to think in terms of years, not months and it's proving to be true. The diet addresses many illnesses and it's aim is to heal the gut. While it's doing that, most other ailments begin to improve. It explains the gut/brain connection to the entire body. It's called GAPS for two reasons, for those of us who fall through the gaps and the title is actually the Gut and Psychology Syndrome written originally as a diet for those who were not able to do the SCD diet, which was based on the work of Dr. Haas who found the original 'cure' for celiac. It's the only thing that's made sense and takes some time to really absorb the content but well worth the read. There's a website: www.gapsdiet.com. I also found a site that has menu-planning for GAPS. www.heartofcooking.com. I went to the doctor today and learned that my bloodwork has improved in every respect. My blood pressure was down for the first time since January to 124/72!! It's not all wonderful, believe me. I haven't been able to leave the house without an escort since July but I can now see that it can happen one day. Keep looking for answers and don't give up. It's basically a 2+ year plan and take dedication but for some of us, what ARE our options??? I wish you well.
  8. Nasty subject.....sorry. Right now because of other digestive disorders on top of the celiac, I have been on GAPS diet for 11 weeks. I haven't been able to digest carbs other than carrot and garlic juices, but can eat chicken, lamb the broth and oils like nuts, cod liver oil, etc... Am on my first week of a little kraut juice, about 4 tsp. throughout the day. The last 3 days my poop has turned bright green and I was wondering if this was a good thing or not. Hate running to the doctor for every little thing. Thanks!!
  9. When I read all that you've written, it sounds amazingly like myself only you're 16 months ahead of me in the SCD experience. I am inspired to keep trying. Love to talk with you sometime. Ann
  10. Absolutely!! I'm on the SCD diet and found that I was not the only one. Quinoa is 60% starch and some of us can not break it down. It's all explained on the SCD pages. You might want to browse the online pages at www.scdiet.com or www.pecanbread.com and see if it sounds like you. It's work but do you have a choice? It takes a good attitude and determination regardless of what you do in life, right? I started out with the celiac diagnosis and then IBD and then leaky gut and so on.......Sometimes things are very complex. Go with your gut. haha?? I've found a lot of freedom with the SCD diet. I am able to see what I 'can' have instead of what I can't. I'm 7 weeks in and still on stage 3, but I'm feeling well enough to get out of the house now and then..........finally, after 10 months of being bedridden. So, don't give up. I hope you're doing better.
  11. Thank you. Several people in the family have commonalities with my own health history, so at this point, it's a starting place for them. I don't think they want or even able to spend the kind of money that the full work-up costs. Plus getting someone to take them seriously is a problem. I've read on this forum in the past, that some people have been tested through online sources and then took those results to their doctors, which is what I'm looking for. I understand about all the layers of problems we develop; all too well. Over 10 years myself and now I'm dealing with the celiac along with disease and damage that I'm having to work through too. It would be nice to be able to help some of the relatives not have to go through this. Thanks again!!
  12. I don't need it for myself. I have a diagnosis already.
  13. I have family members who would like to get tests done but aren't 'sick' yet. Does anyone know of any resources for getting tests done through online, reliable labs? I can't tell one from the other. Any help would be appreciated.
  14. You can go to www.GAPSdiet.com to review the basics. It also goes over the few supplements that are used and how to use them. I've started the cod liver oil and probiotics so far. It's been a last resort since the normal elimination of gluten and grains were not enough to make me feel better at all. I have developed many intestinal problems over the years that I have to address along with the celiac. This is probably not the diet for everyone, but it's been the only thing that has worked for me. The author says it's much the same as the SCD with the exception of the diary, which I'm very allergic to because of the intestinal damage. Anyway, I can't seem to find out why I have all those strange symptoms, like difficulty communicating. I never had that problem before! It was actually a strong point......but not anymore. As far as seeing a doctor: I have been faithful in seeing doctor after doctor, but my insurance has cancelled me, I had to quit work and out of money, plus I live alone. It's not for lack of trying these past 10 years, believe me.
  15. How long does it take to build back the B's if you're supplementing and dietary measures are taken? I'm on the GAPS diet now.........for about a week. Is it permanant if it's gone too long? I tingle, my ears ring, heart jumpes around and I get dizzy all at the same time. Sound like a vitamin shortage? I get so frustrated at trying to have a conversation......and embarrassed, that I prefer to stay alone. EVERYONE.......THANK YOU FOR THE ANSWERS!! HAPPY WEEKEND!
  16. I was wondering if anyone else has/had problems with normal communication? If so, what do you do for it? I get so frustrated with myself because I have such a hard time just talking to people now. I talk too much, can't listen like I used to and don't understand the normal non-verbal cues anymore. Does this go with celiac? Does it go away eventually?
  17. I've recently found out that gluten alone may not resolve the issue. I'm having to eliminate all grains. I have many food allergies and sensitivities so I kept getting nuts. Yes, a moment of sanity reveals the insanity. My ND assures me that it's part of the celiac and problems associated with it and has put me on the GAPS diet. You can go to www.gapsdiet.com and read it and determine for yourself if it's something you want to try. It means, 'gut and psychology' by the way. Hmmm.... I just read the other comments and only a celiac can laugh at another celiac. It's been pretty embarassing and I feel badly for people who have to love me.........like my family. My social life sucks!!
  18. I was reading about GAPS diet and it sounds like it makes sense to me, but I wanted to know if anyone here has had actual experience with it?
  19. Thank you so much for the ideas! I have no idea how to use coconut milk, but I ordered a cookbook today called The Super Allergy Girl Cookbook. I am allergic to eggs to, but I found an egg replacer that I'm dying to try. I can't handle spices yet, but Thai is my favorite food and I will find a way when I heal a bit more. I'm not able to handle rice either, but have found bean noodles that I will eventually try too. There's a whole world of options out there that I didn't know about! Have a great night!! Ann
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