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ravenwoodglass

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ravenwoodglass last won the day on January 10

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About ravenwoodglass

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  • Birthday July 31

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  1. I think everything looks good with the exception of this question ' why does it have to me more strict than NCGS ' You may want to change it to something like - What happens if a celiac accidentally eats gluten - and talk about the antibody reaction and how it can be more severe than before diagnosis. The reason for dropping the NCGS question is because your topic is celiac not NCGS. Good luck with your paper.
  2. Welcome. I am sorry to say that you really do need to keep on gluten until your biopsy. Just a slice of bread or a few crackers would be enough. You could try calling the GI office and asking for the doctor to call you back. Explain that you went gluten free for a week and what happened when you added it back in. A few doctors will diagnose based on blood work, response to the diet by resolution of symptoms and the return of symptoms when gluten eating is resumed. There may be the possibility of getting you in sooner for the endo or putting you on a cancelation list if you can get in for the endo on very short notice. You are in a tough spot, one I was in myself many years ago. If you have to do the full 11 days on challenge is there any way you can take sick or vacation time or talk to your boss so that he/she understands that you may not be fully functional until the procedure is done? Take comfort in the knowledge you gained that one week gluten free that the end is in sight. You will likely have some ups and downs after you are able to finally eliminate gluten forever from your life. Use those 11 days to prepare your home for the gluten free lifestyle and to learn what you need to do to keep yourself safe. Ask any questions you need to and do read the Newbie 101 thread at the top of the Coping section. It will have a lot of valuable information on what we need to do to keep ourselves safe.
  3. Test in October and a letter in January? Sounds like either the results or the letter got tucked under some papers or the doc had a real long holiday vacation. Good that they are getting you in quickly. Since you had positive blood work and are having the endo done tomorrow you should be able to go ahead and go gluten free after the procedure if the doc doesn't want any further celiac testing. Hopefully you will get an apology from that doctor for your positive blood taking so long to be acknowledged and addressed.
  4. Brain 'wear and tear' huh so what did he attribute your neuro symptoms to? Mine told me I wanted to be sick so here's a Prozac. Do make that appointment with the GI and keep eating gluten until your testing is finished. By the way there is a gene that has been newly recognized as a celiac associated gene, DQ9, (I have 2 copies of it) that in the US is commonly considered a gene for RA. I had severe joint impact that resolved slowly but did resolve. Not saying that will be the case for you but if the doc wants to do gene testing don't let them convince you it can't be celiac if you don't have one of the two most common genes. It is rare but I had a biopsy and blood positive adult child who had her celiac diagnosis taken away a few years after she was diagnosed because she, like me, is a genetic oddball. Do get on the diet after celiac testing is done. Neuro symptoms can take some time to heal . I found physical therapy to be very helpful in helping me to overcome the balance issues. I also had one leg that wasn't getting the nerve signals properly so I kind of dragged it and the PT helped me regain a normal gait. I also took a sublingual B12 for quite a while and that seemed to help with the tingles and numbness. Good luck and I hope you get some answers soon and can begin healing.
  5. It is not uncommon for folks with celiac to have nasty problems with dairy until they heal. The tips of the villi create the enzyme that helps us digest dairy and when celiac damages those tips dairy will cause issues. Many are able to add dairy back in after they heal. I was happy to be one of those. there are some, however that react to the protein (casien) rather than the sugar (lactose) and I think they may be less likely to be able to do dairy products. When you have healed you can try adding dairy back in starting with hard cheeses like cheddar.
  6. Welcome. Not everyone shows positive on all the tests in the celiac panel. It is quite significant (IMHO) that you did have a positive result anti gliadan test. Can you, or have you, seen a GI doctor? If you haven't since you got the celiac blood results it might be a good idea. When you do make sure you bring copies of that blood work with you. Then after all your celiac related testing is done do give the diet a good strict try. Also, did your neuro do an MRI? Some of them don't realize that UBOs (look like white spots on the MRI), are associated with celiac. I know mine didn't.
  7. If your boyfriend would leave you just because you have celiac he isn't worth keeping, IMHO. Hopefully you were kidding. If you are going to get tested for celiac you need to go back on gluten for about 3 months. That should make things easier short term with your boyfriend. You have to be eating gluten for the antibodies to form that they will be looking for in your bloodwork. For some folks it can take a bit of time for a reaction to build up so you may find symptoms appearing. You may not.
  8. The doctor may give you a diagnosis after your symptoms resolve and your antibodies go down. Celiac savvy doctors know that damage can be patchy and be missed. That may have happened with you. Being gluten free isn't going to impact testing for other issues and since your appointment is over a month away you may find being gluten free resolves those issues and the other testing isn't needed.
  9. Since you had positive blood work and genetic testing a good strict trial of the diet is in order. If memory serves that test is specific to celiac. Perhaps talk to the doctor about retesting your antibodies in 6 months to see if they go down on the diet and your symptoms improve.
  10. I had severe ataxia before diagnosis. For me the balance issues felt like I was walking on a ship in rough seas. Ataxia started in early childhood but my problems with walking as a child were attributed to some congenital malformations that were corrected. Turned out that wasn't the case. I was undiagnosed for over 40 years and eventually I also had trouble with speech, and even swallowing. They thought I had MS also. Ataxia causes brain lesions similiar to the ones found in MS but a spinal tap didn't show the 'debris' that is found with it. The doctors then told me it was nothing and 'I wanted to be sick'!!! I also had the skin form of celiac (DH) and for the last 15 years almost constant D. I did heal but it did take time. However by the six month point I caught myself running up the stairs and when I realized what I had done I sat on the top step and cryed. I was far from fully healed though that took a few years and the help of a couple of good Physical Therapists. I still have issues with balance and speech if I get glutened but it does resolve now in a couple weeks. Did they do an MRI with you? If that is what lead them to think it was MS do be aware that not all Neuro Docs are aware of UBOs (Unidentified Bright Objects) and that they are associated with celiac. Do get the full celiac screen that Cyclinglady advised and keep eating gluten until all celiac related testing is done. It wouldn't hurt to give the diet a good and very strict try after celiac testing is finished. I hope you are doing better soon.
  11. Dharwood you had positive blood work, positive gene test and are seeing improvement on the diet. After 2 months your antibody levels had gone down from being gluten free. You really are diagnosed. Your body has shown you that by the antibody drop.
  12. I amgoing to second all that GFinDC stated. You can heal but you MUST go gluten free. I was undiagnosed for well over 40 years and was severely impacted and I healed. If you don't go gluten free you may find more and more of your bodies systems being impacted. Please do read the Newbie thread as there is a lot we have to do to stay safe. Ask any questions you need to and I hope you heal quickly.
  13. The test I bolded is the total IGA. That test is to make sure that she makes enough IGA for IGA testing to be accurate. The TRANSGLUTAMINASE IGA is the test to check for celiac, hers was positive.
  14. No GFinDC was talking about the total IGA not the TTG IGA. Your daughters test was positive so it is likely she does have celiac. You say she has no symptoms but celiac has over 200 symptoms and not everyone gets the tummy issues that are severe in the beginning. She really should have the biopsy done if possible. If not then a trial of the diet is in order. It may help whatever issues she is having that prompted her doctor to order the celiac testing. Also since she has had a positive test all first degree relatives should be tested, mother, father and any brothers or sisters.
  15. If you have DH you have celiac. Did your doctor run liver panels before he prescribed? He need to and he also needs to check liver function periodically while you are on the drug if you choose to take it. Are you gluten free? If you are not you need to be. If your doctor has told you to take Dapsone and not go gluten free you need a different doctor.