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nasalady

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Everything posted by nasalady

  1. nasalady
    Hi Kim, Welcome to the board! Your son's symptoms do fit the general celiac picture, although you should keep in mind that there could be other causes for these problems. Unfortunately the blood tests for celiac disease are not very accurate in young children. My granddaughter Carly fit the classic "celiac baby" profile: thin as...
  2. nasalady
    Why are you paranoid about MS? Does anyone in your family have it? MS is an autoimmune disease, like rheumatoid arthritis, or Hashimoto's thyroiditis, or even celiac disease itself. Celiac disease doesn't cause MS, as ravenwoodglass said, but it can "open the door" for other autoimmune diseases to develop. The actual mechanism is a bit complicated...
  3. nasalady
    Lexi, I'm so sorry that you're having these problems. I don't know if my experiences will help or not, but I too have fibromyalgia. The area in which the pain is worst is my back. I've been in a wheelchair for several months now because if I try to walk more than a few yards or stand more than a few minutes I end up with excruciating pain in my back. ...
  4. nasalady
    Here are a few links that may help: San Diego area: Open Original Shared Link CA Central Coast (Pismo Beach, Santa Maria, San Luis Obispo, etc): Open Original Shared Link And if you wish to search on any city anywhere in the US: Open Original Shared Link In California here are a few restaurants which have gluten free menus (if they're a national...
  5. nasalady
    Thanks for your reply! Wow, three years! I may not tell him that! Actually what I said was, "He also has a few new blisters on his backside and his knees and elbows are red too." By backside I mean where he sits down.... DH typically appears on the buttocks, knees, and elbows, although it can show up in LOTS of other places too...
  6. nasalady
    Unfortunately not safe for those who have to avoid soy!
  7. nasalady
    Both of those conditions are very common in our community here. Have you been diagnosed with any autoimmune thyroid disease? Because those have definitely been linked to celiac disease. Sounds like you do belong here! Good luck! JoAnn
  8. nasalady
    Thanks ChemistMama! Maybe I should have called myself "AstronomerMama"! Unfortunately they do itch....so we think they are a new outbreak of DH, but the good thing is that the new outbreak is much less widespread and is now going away fast. Yes, I know, but I did search thoroughly online and found stories of people on Dapsone who did develop...
  9. nasalady
    First I want to say that I'm sorry you're going through this. My husband found out he has celiac disease by developing Dermatitis Herpetiformis (DH). He has had it for MONTHS now, although it is going away slowly (very sloooowwllly....). If you can, you might want to go immediately to see a GOOD dermatologist (specifically one who has diagnosed DH...
  10. nasalady
    Hi Melodi, Yes, I get both neurological and gastric symptoms from gluten exposure: "pins and needles" in my hands and feet, hand tremors, severe migraines, vertigo, etc. Your symptoms could definitely be gluten related! JoAnn
  11. nasalady
    My grandkids' biological father is African American, and he says his brother (who is now deceased) had both MS and celiac disease. Which would mean that the kids have celiac on both sides of the family because I have it too. African Americans can have celiac disease. You might want to see a different doctor....one who's a little better informed!
  12. nasalady
    Misdiagnosed for decades (was told I had IBS). I believe this has been the cause of many of my other autoimmune diseases (and I have A LOT of them). The worst ones at the moment are the rheumatoid arthritis and the autoimmune hepatitis (my immune system is trying to kill my liver). Why do I blame celiac disease? Because the latest research indicates...
  13. nasalady
    Yep....sensitive to light, loud noise. Mainly due to my fibromyalgia though.
  14. nasalady
    My husband had his doubts too, and all I was eliminating was gluten! He said he would go along but I could tell he didn't understand. I put the entire family on a gluten free diet in January, and he agreed to it (reluctantly) mainly because I proved to him I could still make pizza gluten free! Until the SuperBowl. He decided to buy some beer...
  15. nasalady
    Please see this (older) thread: https://www.celiac.com/gluten-free/index.php?showtopic=29675
  16. nasalady
    Just for those who may not know where to find the original recipe: Liz's Gluten Free Microwave "Buns" (as originally posted) Ingredients: 1 large egg 2 Tbs. brown rice flour or sorghum flour 1 Tbs. almond meal 1 Tbs. golden flax meal 1/2 tsp. baking powder 3/4 tsp. sugar (or one packet Splenda or other artificial sweetener) 1/2 tsp. cocoa powder...
  17. nasalady
    Hi Ashley, Yes, that's normal....most of us seem to become more sensitive the longer we are without gluten. Sorry to hear you're going through this! When I started the gluten-free diet I tried to let my family eat "normally" but I kept getting glutened by crumbs. I just couldn't take being sick half the time, so now we are all gluten free. Hope...
  18. nasalady
    Very true! Well, an allergy can elicit an anaphylactoid reaction....I believe that the mechanism is different? However, many on this board, and even a few doctors are beginning to believe that "gluten intolerance" is frequently just early stage celiac disease yielding negative blood work and biopsy results. I'm still trying to figure it out...
  19. nasalady
    Well, I'm asking about this because of my adopted daughter, Emma, who will be three tomorrow. She has many, many medical issues, but I've wondered about a gluten problem because she's my biological granddaughter, and I have celiac disease. My other granddaughter Carly has celiac, diagnosed via biopsy. Emma is HLA DQ2, and has celiac disease on *both...
  20. nasalady
    Welcome! Your story sounds very familiar to many of us, I'm sure.....it certainly does to me! You've decided that you can't continue eating gluten until you're tested, which sounds like the right decision for you. Hopefully you will start to feel much better within a few more days. The fatigue and weakness should improve, unless caused by something...
  21. nasalady
    But I've read right here in this forum that if you have DH you automatically have celiac disease. Here are a couple of links that support this: Open Original Shared Link Open Original Shared Link
  22. nasalady
    My GI doctor diagnosed me with celiac despite negative bloodwork and biopsy mainly because of my many other autoimmune diseases. The latest research indicates that other autoimmune issues are frequently tied to celiac disease.
  23. nasalady
    Thank you. I am well-aware of the autoimmune nature of celiac disease. Clearly someone who is either celiac or gluten intolerant would "improve" off gluten....however, please define "improve" with respect to damaged villi. Does a person with gluten intolerance have malabsorption issues? If so, please explain the mechanism by which the villi...
  24. nasalady
    I guess I'm still trying to figure out a definitive way to differentiate between the two conditions. If the "gold standard" for diagnosis of celiac disease is the biopsy, then damaged villi only happen if you have celiac disease, right? So if a child who had the diagnosis "Failure to Thrive" suddenly started to gain weight after going gluten free...
  25. nasalady
    Emily, I'm so sorry about what you're going through. And you've come to the right place for support! Many of the people here were extremely ill when they were diagnosed with celiac disease. Believe me, there are a lot of us who understand the frustration of not being able to physically handle the day-to-day necessities of life. But please don't believe...
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