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ravenwoodglass

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About ravenwoodglass

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  • Birthday July 31

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    Female
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    Gardening, photograpy, painting and drawing, textile arts, glass art, reading
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    Upstate NY

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  1. Talking to a counselor or psychologist may not change the fact that you have celiac but it can help you change your very negative attitude about the diagnosis. You can live a very full and active life with celiac. It is not the end of your world it is the beginning of one that is healthier and if you allow it to be, happier. I do so hope you can see the world in a brighter light soon.
  2. I hope you get a clear answer. If his tests are positive then it is advised to test all first degree relatives periodically.
  3. Hopefully Cyclinglady has been able to set your mind a bit more at ease. Not much to add but congatulations and hope all goes well.
  4. I had lots of other diagnoses before they finally figured out that I was celiac. This will be long. I was diagnosed before the more accurate DGP tests were available and was a false negative on whatever older tests they did. Something not uncommon with folks that have severe DH. Almost everything resolved in time with the diet. I did need to have physical therapy to help normalize my balance and gait. As someone with DH please don't supplement with iodine until your DH clears as for some reason it will keep the antibodies active in the skin. Do add it back in when DH clears though as it is an important nutrient. Before I say what was impacted by celiac I should note that I stopped ALL meds and supplements for a bit before I did a doctor guided elimination diet as I was on so many I needed to know if my symptoms were whatever my disease was or whether some were caused by side effects of the scads of meds they had me taking. A couple did need to be tapered and I sought my doctors advice on tapering them properly. Ataxia- which included balance issues so bad I needed Canadian canes to walk or a wall real close. Aphasia (I couldn't tell you what a fork was if you held one up in front of me). Memory problems so bad that at times I sat in my car with my keys in my hand and cryed because I couldn't remember what to do with them (never told my doctors as I was afraid they would take away my drivers liesence). Dragged one leg and nerve conduction tests showed a flat line as almost no signals were getting from my brain to my leg. I still have a bit of lag time on that side but it only affects my typing as one hand moves slower than the other so I often reverse letters. MRI showed multiple brain lesions (UBOs) and it was thought I had MS but spinal tap was clear. Vitamin B12 in sublingual form helped heal my nerves after diagnosis but it took a very long time. Migraines- haven't had one since diagnosis unless glutened. I had the pain occasionally but the visual auras were almost constant. Eye floaters- gone completely Depression and anxiety- Depression only shows up when glutened, lasts one miserable day then lifts. I have PTSD so that is still with me but manageable after years of counseling and occasional medication. Celiac likely made it worse but not the original cause in my case. Severe joint and muscle pain- resolved in time without meds. Before diagnosis I was on 2 meds that were pulled off the market and then Celebrex which didn't really help at all. On rare times now when I need something I take good ole asprin or Aleve. Fatigue- Constant but expected with all the pain and lack of sleep from nightly D. Wonky liver panels- doctors thought I was an alcoholic even though I rarely drank and usually would drink NA beer when I did. Liver panels went back to normal soon after diagnosis. DH- severe still get one or two little blisters when glutened but they resolve quickly. Prediagnosis my face, scalp, legs and arms were in constant state of outbreak. And of Course IBS- Even though after diagnosis I remarked to my GI how happy I was not to be woken up by violent D every night that would continue for 3 hours and he said 'Gee IBS doesn't do that why didn't you tell me?) I had repeatedly but he wasn't listening. Osteopenia- That has now progressed to osteoporosis but not unusual for someone my age and have now started taking calcium, better late than never. This result was from a doctors visit (first in 7-8 years) where I got a full physical and a complete bill of health with the exception of the Osteo. After diagnosis I took only a stress B&C, sublingual B12 and a multi. Early on I also took Royal Jelly with a bit of honey a few times a week for energy. Even after all these years I am amazed at the body's ability to heal itself once the demon gluten is removed. I know I will never be 100% of the person I would have been if I hadn't been undiagnosed for around 40 or so years but I am so thankful for the recovery I have had and that so many are being dianosed so much sooner now than were even 15 years ago.
  5. Just being able to smell gluten food souldn't be an issue. What are you eating for breakfast and lunch? Are you getting enough protein and carbs for those meals? If you aren't that could contribute to you being irritable and tired.
  6. You have only been gluten free for 4 days so is there any way you can call your GP and pick up a lab slip or have them call the lab for a full celiac panel immediately? If you have been seeing your doctor for your problems that may be possible. Ask to speak to a nurse when you call but be aware that one may need to call you back after speaking with the doctor. It might be helpful if they would also do testing for anemia, both iron adn B12. If those tests are positive you and the doctor can decide from there what is going to be best for you to do. You do need to go back on gluten ASAP. It doesn't have to be alot but it may be easier on your symptoms rather than waiting a few months. Many do find that their reactions are more severe after a short time gluten free. I also use liquid Pepto Bismal for stomach pain, asprin or Aleve for the inflammation and take Immodium if I need to leave the house and have had D. You might also find that a sub-lingual B12 helps with some of the brain fog and fatique.
  7. You say you had pasta. Did you use the same colander to drain it that you used to use for gluten pasta? That would get you. If you haven't already do read the Newbie thread at the top of the Coping section. You have only been gluten free for a short time and it can take some time to heal. Many have good days and bad days in the beginning and hopefully the good days will far outnumber the bad soon.
  8. Welcome to the board James. You have been through a lot. ((((((((((((((((((((((hugs)))))))))))))))))))))))))))))). Does the rest of your family still eat gluten foods? If they do you may be getting some cross contamination (CC). CC happens when tiny amounts of gluten get into someones system by doing things like sharing things like butter, nut butters, jellies, mayo etc. Someone dips their knife, speads and then dips again getting minute amouts of gluten in the item they are dipping in. Celiacs need to be very careful of CC. Even going so far as having our partners who eat gluten brushing their teeth before we kiss. You should read the Newbie thread at the top of the Coping section as there is a lot we have to do to keep us safe. It might help if you can have your parents read it too, or translate it for them if they don't read English. Anxiety is awful. I also suffer from it. I actually take the alprazolam for it but have also learned ways to cope so I don't need it very often. Excersise helps some people, others feel better listening to music they find relaxing, yoga, cuddling with our cat or dog, everyone is different. I can get obsessive thought patterns that are not pleasent and found seeing a psychologist to be helpful in finding ways to end that pattern. Don't know if you might find one helpful or not. One last thing. Try to eat as clean as you can. Meaning try to limit stuff like processed gluten free foods. I also don't tolerate lupine flour. In addition I don't tolerate soy protein or flour. It gives me stomach pain and constipation. I know soy protein and flour are in a lot of gluten free foods. You may want to eliminate it for a couple weeks and see if that helps. Can't say for sure it will but worth a try since you are still having issues even though your antibody levels are down. I hope you are feeling much better soon.
  9. I hope your not eating gluten free at this point. You need to be eating gluten for any celiac testing. If you are gluten free you need to be eating at least a couple slices of bread worth of gluten for a couple months before you have testing done. You also may have DH but if you have recently been on prednisone for the rash you will need to wait for testing by a Derm. If you do go for testing for DH try to find a doctor who is knowledgeable about how to do the biopsy properly. They need to do the biopsy next to active lesions. I hope you can get some clear answers soon.
  10. Welcome to the board. Your bone pain should resolve and it doesn't mean you have any bone loss at this point. My bone pain was horrific and I had it for a long time and it did resolve on the diet. It took a while but I had it off and on since childhood and wasn't diagnosed until my 40's. Your's may resove fairly quickly hopefully. Do be sure to continue to eat gluten until you know whether or not they are going to want an endoscopy. Being in another country I don't know if they always endo if bloodwork is positive where you are. Check with your doctor on that. Many times younger people heal fairly quickly and I hope that is the case for you. Do be sure to read the Newbie thread at the top of the coping section as it will have a lot of good info for you. Ask any questions you need to and once you are firmly diagnosed do alert other family members that they should be tested also.
  11. You only need one celiac gene to get celiac. Celiac is not a disorder where you have to have 2 copies of a gene to develop. That said you didn't get any relief from the diet and 2 years later something else was discovered and treatment of that resolved unresolved issues. You might want to consider going back on gluten for 2 or 3 months and then getting antibody testing and an endoscopy. If you have no reaction to the challenge and your antibody levels come back negative then you are likely not celiac at this time. If however you do react to the challenge, and reactions don't have to be GI related as celiac can cause everything from skin issues to neuro issues and much more, then you may want to go back to the diet even if your antibodies are not elevated.
  12. Gluten Ataxia is NOT a psychological aspect of celiac! Psychological aspects do not form brain lesions (UBOs) that can affect balance and cause other issues like aphasia. While some of your advice is sound some of it borders on being dangerous. I have to wonder with your constant referrals to your blog if your main purpose here is to sell the book you have on amazon.
  13. This is not a bright side. Just ask any Diabetic who has had an amputation. You need to be very careful until this resolves. Carefully check your feet at least a couple times a day. Make sure you don't have any blisters or cuts and if you do clean and cover them and if any signs of infection show get to your doctor promptly. If you have cuts serious enough to need to use superglue on you need to have them evaluated by your doctor. Let the doctor decide whether you need stiches, glue or just a butterfly bandage. You do not want to glue in any bacteria and if the wound needs to drain the glue will prevent that. Some injuries you want to have air exposure to heal quicker. Talk to your doctor about what you need to do with cuts and scrapes. Your doctor may also want to do an electromylogram to check your nerve conduction and if you have no feeling in your feet he/she may want you to be evaluated by a PT because numbness can effect your gait making you more prone to falls. I hope this issue resolves soon for you and for heaven's sake use potholders or another tool whenever cooking or baking.
  14. I have to agree with Gemini. About 4 years ago I took a job at a local motel cleaning rooms. I was undiagnosed and very ill for most of my life and am very sensitive. A glutening for me means a day of suicidal ideation with severe D followed by a 3 day GI bleed and about 3 weeks of joint and muscle pain and balance issues. The crumb level can be quite high in some of those rooms. I was a bit nervous when I started that I would end up being CC'd but that hasn't happened. I even sometimes eat my gluten free PB&J as I work. I just put my sandwich on a clean paper towel, wash my hands before I eat and will hold a section of sandwich in one hand while I dust with the other. Just wash before you eat and don't rub your eyes or pick your nose unless you have washed first. As to your thinking that celiac is a death sentence I had DH starting at around age 5 and GI symptoms started at that point with severe C and bone pain so severe that I would lay in bed at night screaming. It broke my Moms heart that she couldn't do anything to help the pain other than hold my hand and cry with me. The last 15 years before I was diagnosed I never had a full nights sleep as I would be up every night with severe D and the neuro, jopint and muscle issues were so bad one of my children told me the family would understand if I committed suicide. I was an undiagnosed celiac for over 40 years. I recovered. It took time but I recovered. You can also.
  15. What are your readings? Can you have your doctor do an A1C for you? That might answer some questions as far as diabetes goes. I don't know alot about that subject so hopefully others with more knowledge will chime in. I hope you get things figured out soon and the anxiety gets better. It can be a hard fight, as I know from my own experience.