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ravenwoodglass

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

Everything posted by ravenwoodglass

  1. ravenwoodglass
    On the dairy issue, the same villi that get damaged with celiac produce the enzyme that you need to digest dairy. As much of a pain as it is many of us do need to cut out dairy with the possible exception of gluten-free yogurt and hard cheeses, for a couple of months until the villi heal. It isn't always a forever thing unless someone has a casein intolerance...
  2. ravenwoodglass

    ARCHIVED Gluten Ataxia

    ravenwoodglass replied to jennysoul's topic in Doctors

    Yes, but that progression can be very slow. For example with me, in childhood I lost leg reflexes, began to drag one leg and started to stumble and 'cruise' off walls and I fell a lot. Things remained basically the same for many years and then after my daughters birth in my late 20's things started to progress more quickly. I started to feel like I was...
  3. ravenwoodglass
    I finally got a reply from Tropicana, I knew from my own experience that much of what they make is not safe. Only the juices that say they are 100% just juice are okay. I got very, very ill from a lemonade they make called 'Simply Lemonade' so make sure you read the ingredients and not just the label. Their reply: We're sorry the information you were...
  4. ravenwoodglass
    I can answer about the seizures, I had temporal lobe seizures for years, the only time I get them now is when glutened. The candida I know is fairly common amongst celiacs. As for the parasites, your doctor is the one to go to for this. He will give you some stool sample tubes with chemicals that you bring back to the lab that will clearly show any parasites...
  5. ravenwoodglass
    He sounds very clearly celiac. To really get an answer to your question though you need to post the tests names, their normal values and his results. If you are going to put him through an endo please make sure you keep giving him gluten until after they do the endo. I am celiac and after testing my kids I only put one of them through it. The rest of...
  6. ravenwoodglass
    Thanks for the link. I am glad to know I made the right choice.
  7. ravenwoodglass
    Hang in there, excercise and watch the calories but don't go to extremes trying to limit them. It can take some time and your body may still be in the 'hey I am starving absorb everything you can' mode. For now enjoy feeling great and maybe take up an active hobby that you weren't feeling quite up to before. Also as you become more fit remember that...
  8. ravenwoodglass
    Thanks for all the input everyone. Just for fun, a maybe bring a point home to newbies, I posted what I took daily at the time of diagnosis along with what I take now, a vitamin and baby asprin. I was going to photograph everything but thought just the then current dailys would be plenty. I decided to to liquify them all together and then toss it into...
  9. ravenwoodglass
    Wegmans will use corn distilled vinager in many things, that they will mark with a G, if the item has gluten (wheat) grain derived vinager it does not get the G. Personallly I trust wegmans and I do not buy any products they produce that do not use the G. Heinz is a brand that uses corn distilled vinager only last I checked, when I use Ketchup that is what...
  10. ravenwoodglass
    If you miss the salt you may want to try getting some that just isn't iodized. I use Morton's or Sea Salt.
  11. ravenwoodglass
    I was straightening today and came across the fishing tackle box that I used to use for all my families meds. I was astounded, I had really forgotten how bad it was pill wise. Just me alone had over 6 daily scripts. Anyway all of these are pre 2002, haven't need any since then , and I am not sure what to do with them. Some are controlled substances ...
  12. ravenwoodglass
    I would reccommend testing and in addition becoming very familiar with all the different presentations of gluten intolerance from behavior problems and learning difficulties to problems with balance (clumsy was what I was called when it was really ataxia), problems with mood and concentration, problems with liver and gallbladder and so on. Celiac and gluten...
  13. ravenwoodglass
    I used to be a professional chef before my celiac became extremely severe. There is no way you are gluten free if you are working in a place where you have to taste everything before it is served! You need to address this issue right away unless I misunderstood this. Your issues with blood sugar and B12 and Iron stores will not go away without your...
  14. ravenwoodglass
    I would describe it as a full body and brain immune and inflammatory response to a toxin that is consumed by many on a regular basis. I would then go on to define a few of the subsets of effects like on liver and gallbladder function, the brain and the hormonal systems, amongst many, that people are not often aware of. I would also point out that undiagnosed...
  15. ravenwoodglass
    I couldn't either. Perhaps the gorilla was giving her a hint. I wish he'd come stand outside a restaurant or two here, I miss going out to eat.
  16. ravenwoodglass
    For me it was. Like you I started in my teens. By the time I was diagnosed I had lost a lot and what I had was mostly white. 5 years post diagnosis and my hair has grown back and most of what has grown back is brown again. The early graying was thought to be genetic, my mother went gray early also. She died young of cancer but I never remember her without...
  17. ravenwoodglass
    One thing you may want to consider doing is to get with NY state and see if you qualify for emergency medical assistance. You can get medicaid without haveing to sign up for money assistance or food stamps. If you are of low income and need medical care you are in one of the best states to get it. Do not hesitate to check out Medicaid, your situation is...
  18. ravenwoodglass
    I used to be able to go there and just ask for a 'low carb' burger. They were even on the menu but don't know if they still are. I always made sure to ask for no condiments. Of course this was early on before I realized how sick CC makes me but perhaps if you go again you could ask if they still offer the low carb whopper.
  19. ravenwoodglass

    ARCHIVED Gluten Ataxia

    ravenwoodglass replied to jennysoul's topic in Doctors

    I also have ataxia. The only test I know of is an brain MRI which can show brain white matter lesions. They look like glowing spots on the MRI that are similar to but not in the right place for MS. Unfortunately to my knowledge there isn't anything they can do for this. Being gluten-free has gotten me off my canes and away from walls and after 5 years...
  20. ravenwoodglass
    No your no the only one. I don't get this anymore unless glutened. They were part of the neuro effects for me.
  21. ravenwoodglass
    I am so very sorry for your loss. I don't think there is any fully getting over something like this. Eventually though the pain does become less severe. It is never easy to lose someone but you are lucky to have a large family for mutual support. You are in many thoughts and prayers.
  22. ravenwoodglass
    Have they suggested sublingual B12 to you? I had severe nerve problems at diagnosis and was told that my damaged villi would prevent me from absorbing the B12 through pills or food. After a short time on the sublingual (under the tongue) B12 alot of my nerve pain and parathesias resolved. Hopefully others will also be on with some help. I hope you get...
  23. ravenwoodglass
    Thanks, yea I think this is going to be much easier for them to figure out. Oddly enough since my diagnosis I can be stressed as hell and not have my tummy act up, so much for the years of 'nervous stomach' diagnosis. My worry of course is C but my logical brain tells me it most likely has more to do with the diverticulosis. It could also have been food...
  24. ravenwoodglass
    Thanks guys. I called my GI guy and he is in 'surgery' today so I am waiting for a call back. I hope it's soon but am sure it will be today. Still pretty out of it and scared to eat anything but hopefully we'll have things figured out soon. Of course the biggest worry is the big C with my being misdiagnosed for so long but I believe I would bleed all...
  25. ravenwoodglass
    My guess would be that gluten is used as a thickener in the yogurt. Many yogurts contain starches so they have the creamy consistency that people want. Heaven forbid we should have a good healthy food that is kept in it's original state but yogurt without a thickener might be they'd have to stir it when it seperated.
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