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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by grey

  1. grey
    I know what you mean - I always hated birthdays in school because everyone would stare at you during the singing! For that matter, I never sent anything back or liked to ask too many questions of waiters, etc. In some ways, celiac has been good for me, learning to do these kind of things; it's gradually getting easier. Although, sometimes, I will avoid...
  2. grey
    I'm at almost 2 years since dx; a lot of things have gotten better, but I think I might still have some issues. I'm not sure. I had symptoms of celiac for at least 8 years pre-dx, and possibly another four years before that. I don't know what's it like to be an adult without health problems, even if my general health isn't dreadful now and wasn't always...
  3. grey
    I've noticed my vision changing since going gluten-free; in fact I literally *just* made an eye appointment before going online. If you're having rapid changes, you should definately get checked. Presbyopia is a slow change, so that doesn't sound quite right. However, I think I'm noticing so much more about my body and health since going gluten-free that...
  4. grey
    Thanks for the comments! I too always thought they were normal -but I'm learning a lot of quirky things I thought were normal were celiac disease. I ran out of my old toothpaste (Crest) not long after being dx'd, and used a some small travel ones, then switched again to a full-size Crest (which I thought gave me a rxn), and then to Tom's of Maine. Maybe...
  5. grey
    Hi Liz, It sounds really rough. It's hard out-of-school how to figure out these things, in school it must be so much worse. I had a couple of thoughts . One, check into Thai and Vietamese food. I think there's a number of things that are ok to eat at both for the gluten-free diet. I have a book called Let's Eat Out! Your Passport to Living Gluten and...
  6. grey
    I've been gluten-free since the end of May, but I'm still really struggling with some of the neurological symptoms of Celiac Disease. Among others, concentration, focus, memory, and aphasia. My therapist ran through the DSM manual for ADHD and I meet all the criteria. Several family members have been dx'd as adults or children. She brought up the possibility...
  7. grey
    What is ora5? Is it a topical thing? I'd like to have some on hand. It took the last batch a really long time to heal and they were excruciating. Is it over the counter? Yeast overgrowth is interesting and I need to look in to that. I'm already on B12 injections and a low-acid diet - which improves other things, but not this, sadly. thanks
  8. grey

    ARCHIVED B 12 Deficient

    grey replied to Annaem's topic in Related Issues & Disorders

    When I was first dx w/ low B12 (2001?), my rheumatologist did a Schilling Test. It was negative for PA and so he told me I was just depressed and should take a multivitamin! I would imagine that you have a better doctor than that (I hope), but don't let them tell you the Schilling Test is the 'gold standard'. It's REALLY old-fashioned and is pretty inconclusive...
  9. grey
    I'm glad to hear it's not lupus! Be careful with the soy milk (you probably already know this), some are NOT gluten-free. I use almond milk; I think it tastes a lot better and it's less soy (especially soy lecithin) which causes problems for a lot of us.
  10. grey
    On replacement milks - I love the Pacific Almond milk. I've used in place of milk in smoothies and once in cooking and it did fine. And it tastes great on cereals. Be careful with replacement milks - a lot of them have gluten and soy, even if they're rice milk, for ex. and it varies by brand. Really check the labels.
  11. grey
    I'm still struggling with healing, but it has gotten better since I was dx'd at the end of May. I didn't notice much improvement for the first month. Cutting dairy and soy, and avoiding raw veg. and most raw fruits has helped a lot. Your intestine needs a break! And, while some people have a near-instant change, more take time. You just started-it took years...
  12. grey
    It is hard to do on a budget! My main suggestion is to check out your local farmers' market. I don't know where you are, but there's probably one nearby on a Saturday morning. Kale at the supermarket? $2.50/bunch. Kale at the farmers' market? $1/a bunch. Organic eggs at the farmers' market are cheaper and my market also has a bunch of meat vendors....
  13. grey
    There's also an autoimmune disorder called Sjogren's Syndrome. The glands that produced mucus, salvia, and tears get inflammed or destroyed. Problems with the pancreas can also cause dryness problems. An ophthamologist can check on Sjogren's; it can be fairly mild, I think, and any time you have an autoimmune disease, you are more prone to another one. ...
  14. grey
    My arthritis pain got worse after going gluten-free. I've been doing occupational therapy on my hands and while my wrists are improving (tenonitis too), my hands are still pretty painful. My neck doesn't seem to have gotten worse, too much. I agree that celiac has a loud voice. As some of my other pain (digestive, migraines) has receded while gluten-free...
  15. grey
    Like Beth, I also ended up with an ulcer from NSAIDs. I also don't tolerate Celebrex and advil anymore, I get a severe fatigue rxn (like I needed more fatigue) and I'm allergic to percadan/percacet. The pain before dx was pretty bad, and I ended up with Alleve (because I could tolerate it, I thought) and other drugs for migraines. Both turned out to be doing...
  16. grey
    They could be related. Quoting Peter Green, head of the Celiac Disease Center at Columbia, Celiac Disease: A Hidden Epidemic: p 86-87 "The well-defined neurological associations with celiac disease include the following: - peripheral neuropathies (numbness and/or tingling in the hands and feet) - ataxia (balance disturbance) - epileptic seizures,...
  17. grey
    FYI, I think this is probably the syndrome your doctor was talking about: Guillain-Barre Syndrome. This is the link to more info at the Mayo Clinic, including a symptom list. Open Original Shared Link this is the internation foudation for the syndrome. Open Original Shared Link I hope your health improves.
  18. grey
    Add me to the column of people who never really realized that the D was abnormal. In fact, I didn't even know it WAS D until I was dx'd. I thought D was just the explosive stuff and only had that sometimes. I probably have most of the possible celiac symptoms and have had off and on for many many years. I've had 2 serious flares that put me in the hospital...
  19. grey
    Is the feeling worse when you've had a big day the previous day? Does it not get better after sleep? Sometimes resting helps, but usually only for a short time, and then I feel like I've burned through the energy really quickly and like I hit a wall or the bottom dropped out and I'm absolutely drained. Like I'm heavier and being drawn to the earth, to sit...
  20. grey
    Thanks for all the info everyone. I'll talk to my md about upping the amount. I knew there was a certain of vitamin D I should be taking, but vaguely remembered there were other issues about type, etc. I also have vague memory (I hate not having recall for reading, dratted celiac!) of reading that you should also avoid certain foods before and after taking...
  21. grey
    Getting rid of dairy and soy, and avoiding raw vegetables has helped my digestion. I juice to get nutrients and be nicer to my digestion. I don't know what you're using to flavor your food, but make sure you check your spices and condiments too. I ended up replacing spices (I have a Penzeys spices near me, and you can buy them in small amounts in plastic...
  22. grey
    I give myself B12 injections every other day. But I'm still really struggling with fatigue and pain, like before I started them. I wonder if I need more per dose, or more of something else. Protein, yes, but I'm not sure about carbs. It's hard to tell. I try to eat rice or polenta with dinner, and I juice or cook a lot of veg/fruit. I will look into...
  23. grey
    Corinne - I'm sorry you're going through it, but it's good to know that I'm not the only one dealing with this situation/ideas. It's one thing w/ the GI or pain, but another with the brainfog. Does your committee know about the celiac at all? good luck with everything -
  24. grey
    Hi, Just had a dexa scan, and sure enough, I have osteopenia. My doctor has ordered me to take Vitamin D, 400 IU, 1-2x/day, retest in 6 mos. I hoped someone could recommend a vitamin D. I was on prescription vitamin D for a short while; my blood serum levels were really low. Now, however, she's written OTC and I have to find something. Also, how...
  25. grey
    Hi all, Hoping someone might have some suggestions about coping with canker sores? I've gotten them my whole life, either with no cause or in response to mouth trauma (biting the inside of my lip, by accident, I'll usually get a canker sore on that site). Since going gluten-free, I've had more sores, and I now have a real doozy of a set on the upper left...
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