Jump to content

ravenwoodglass

Advanced Members
 View Profile  See their activity

  • Posts

    14,675

  • Joined

  • Last visited

  • Days Won

    153

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by ravenwoodglass

  1. ravenwoodglass
    If the doctor doesn't think you have DH then why did they prescribe Dapsone? That med is for DH. DH is the skin form of celiac. The other symptoms you are describing do sound like symptoms that many of us get. If they refuse to do an endo on you then do go gluten free anyway and see if that helps. Some of us have to take things into our own hands unfortunately...
  2. ravenwoodglass
    You have a great doctor. You have positive blood work so stay strict with the diet and go back for repeat blood work in 6 months or so. Your relief of symptoms and the lowering of antibodies on your recheck will be your confirmation. While false negatives are really common on celiac blood testing false positives are not. Read as much as you can here and ask...
  3. ravenwoodglass
    Yup. Gin is a safe alcohol for even those that react to gluten distilled alcohols.
  4. ravenwoodglass
    Celiacs can have low B12 because the gut damage keeps us from absorbing it from our food or supplements. Pernicious anemia is caused by lack of intrinsic (sp?) factor which is a bit different and that form of anemia may not be helped by the gluten free diet. However in both sublingual B12 or B12 injections can bring the levels to a normal range. Your sons...
  5. ravenwoodglass
    2 days was definately not long enough to produce a positive result. Your doctor really doesn't know much about celiac. If you are still having issues you could be getting cross contamination or you could have another intolerance. The most common are to dairy and soy. You could also have casien intolerance not lactose so even if the lactose tolerance tests...
  6. ravenwoodglass
    I have used Shikai and there is also a newer brand called Himalaya that is really nice. The Himalaya even says gluten free on the label.
  7. ravenwoodglass
    She would see a dermatologist. The biopsy needs to be taken from intact skin next to an active lesion. Make sure you tell the doctor that you want them to look specifically for DH as a special test needs to be preformed on the biopsy to find the antibodies.
  8. ravenwoodglass
    Had the grill been used for anything with gluten? It is best for us to use foil under anything on a grill that is not dedicated gluten free. Another possibility- was there distilled vinegar in the salmon sauce? If so you could be one of the minority of celiacs who reacts to distilled gluten grains.
  9. ravenwoodglass
    Glad to hear you finally found the answer for both yourself and your son. Also glad you found us. Thanks for sharing your story. We have heard many similiar ones. I have to wonder when doctors are going to start screening for celiac before folks have their lives so severely impacted. Other countries do screen routinely and they have much healthier populations...
  10. ravenwoodglass
    Ditto. If you are not intolerant to begin with going gluten free then back to gluten will not cause problems. Sometimes folks can have issues that they don't realize are gluten related and the problems may be more obvious when the gluten is added back into the diet.
  11. ravenwoodglass
    If your GP will not address these blood results IMHO you need to find a new GP. That much of a change in 4 months needs to be addressed.
  12. ravenwoodglass
    There are likely many 'gluten intolerants' who are labeled that way simply because they either tested a false negative on testing or were never formally tested. You really don't know whether you have celiac or 'gluten intolerance' but you do know that your body clearly doesn't want you consuming gluten. Are you doing damage to your body? I would say yes...
  13. ravenwoodglass
    Since I have an actual allergy as well as an intolerance to soy I avoid it in all products. In shampoos it makes my head itch and my hair fall out and if in lotions etc I will break out in a rash. I don't know if I didn't have the allergy to it I would be as careful as I am with topicals as I am with gluten though. It would depend on whether I had reactions...
  14. ravenwoodglass
    When I traveled to my DD's wedding I also drove and with it being a 6 hour drive both ways the last thing I wanted to be was glutened. I brought my toaster from home, a small pan and disposable cutlery and plates. I was staying in a hotel with a kitchenette but didn't want to use theirs for CC reasons. I brought fresh fruit, bread, pnut butter and crackers...
  15. ravenwoodglass
    What are you typically eating? Whole naturally gluten free foods are the best thing to go with for fastest healing. Some of us also have other intolerances the most common being dairy and soy. Have you checked any supplements or meds you are on for gluten? If not do so with the maker. Be sure you are taking the proper precautions at home as far as stuff like...
  16. ravenwoodglass
    Yea it is amazing how fast our body will tell us 'Whoa what are you doing' after we have eliminated gluten and then added it back. For me I was off for 2 weeks during my Dr prescribed elimination diet and 3 days after I added it back in I had a violent reaction. My allergist then told me to drop it but referred me to a GI who then demanded another challenge...
  17. ravenwoodglass
    Can you ask your GP for a referral to a GI? If the process is too complicated and you don't want to wait you don't need a doctors permission to be gluten free. I think you are in a country that will give some financial help with the cost of gluten-free foods but you need to weigh that benefit against the physical cost of continuing on gluten until they can...
  18. ravenwoodglass
    I just made a marble cake with this mix this week. Although the box says to use 3 eggs I use 2 whole eggs and just the white of the other because I think it is too 'eggy' with all 3 yolks. I also use real butter and for the chocolate 'marble' part I put about 1/2 the batter in the cake pan then I mix Now Instant Hot Cocoa mix (about 1/2 cup) into the rest...
  19. ravenwoodglass
    I did for the last 5 years before I was finally diagnosed. It was hell on earth. Make sure you let your doctor know this is happening. Some of us are told we have IBS but that doesn't happen with IBS. At least according to my ex-GI when I told him that one of the best things about being diagnosed was getting a full nights sleep. He then told me he didn...
  20. ravenwoodglass
    It is entirely up to you whether you want to have the biopsy done or not. With a family history and positive blood tests and a reoccurance of your issues on the reintroduction of gluten you really have a 'diagnosis'.
  21. ravenwoodglass
    I had celiac from the time I was around 5 and wasn't diagnosed until I was in my midforties. I was very close to dying by the time I was finally diagnosed but I did heal. In some ways I healed quickly, my migraines and constant D ending within a couple weeks gluten free but some of the other damage like neuro problems and arthritis took quite a bit longer...
  22. ravenwoodglass
    Yes although this has resolved gluten free. It is different from DH though. I think in my case the dematographism was from my bodies inflammation. My DH lesions were the typical very itchy blistery rash although at times it was so itchy that the blisters would be scratched off as soon as they appeared. DH also leaves distinctive purplish scars that are slow...
  23. ravenwoodglass
    Did your doctor do a total IGA? If your total IGA is low that will cause a false negative on the tests. False negatives are common and you don't need all the tests to be positive to be celiac. If you are not going to have an endo done then go ahead and start the diet. If you are having an endo then wait until the day that is done to start. Be aware that endos...
  24. ravenwoodglass
    Did your doctor specify that you needed gluten free solution? If not the doctor should have. I have had the CT with contrast twice, the first time I didn't even make it out of the hospital before I got violent D. The second time the doctor told them I needed the gluten free contrast, the liquid was clear and not heavily chalky like the solution I had before...
  25. ravenwoodglass
    I don't think so. My DD went to a very large university in a large city. The best thing folks can do is to ask questions after they get their acceptance letters so they can make the best decision as to where to go. Celiac is covered under the ADA and it doesn't hurt to ask what a college will do to accomodate but some may be more flexible than others.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.