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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
    Dad would be a good idea also. Unfortunately sometimes women are not taken as seriously as men by doctors. One more thing to add...If by chance you are being woken up at night by stomach issues make sure your doctor knows this. We often get labeled with IBS and IBS does not produce this symptom.
  2. ravenwoodglass
    What tests did they do and were you gluten free or gluten light when they were done? You need to be eating at least the equivalent of a couple slices of bread a day for about 12 weeks before blood tests if you have been gluten free or gluten light. Celiac damages the area of the intestine that produces the enzyme needed to digest dairy so dairy will produce...
  3. ravenwoodglass
    It means that, like myself, you have one of the rarer celiac associated genes. Welcome to the board and the 'club' you never wanted to join. Do be sure to read the Newbie 101 thread at the top of the Coping section and feel free to ask any questions you need as we have a lot of very knowledgeable folks here that can help. Be sure also to encourage all...
  4. ravenwoodglass
    Yes gluten can cause serious depression and suicidal thinking and even actions. After CC I get 24 hours where life does not seem worth living but I am able to fight it because I know that the feelings are being caused by being glutened and will lift. I didn't have that knowledge when the first episode of gluten related depression hit me hard at age 11. I...
  5. ravenwoodglass
    You stated in your first post that you had both positive blood work and a strong positive on your biopsy. Why is your doctor wanting to redo the testing? Being gluten free will not impact testing for other issues and glutening for 6 weeks may not be long enough to produce positive blood antibodies. I would think redoing biopsies to see if your villi have...
  6. ravenwoodglass
    McCormicks single ingredient spices are what I use. I also will get Wegman's mixed spices if they have their circle G. I put their Garlic and Herb blend in almost everything from meats and eggs to veggies. I know it is expensive to replace all your spices but if you have used a lot of generic ones I would to be on the safe side.
  7. ravenwoodglass
    That is not a for sure that you are not celiac. There are more than just the two most common genes that are associated with celiac disease. I am very thankful that I was diagnosed before gene testing became common. I would be dead by now. I am a double DQ9 and that gene was just discovered to be associated a few years back. By low dose immunotherapy...
  8. ravenwoodglass
    Welcome to the board. All you need is one positive blood test on the panel to have celiac. You had that positive. How many biopsies did the doctor take? At least 5 or 6 should have been taken from different areas of the small intestine. Damage can be patchy and easily missed. Doctors sometimes miss that the inflammation and other signs are also indicitive...
  9. ravenwoodglass
    I don't know where the person answering the pepperoni and gluten question is getting their info but it is wrong. I have found it to not be common to find gluten in prepackaged processed lunch meats, some are even labeled gluten free. If you live in the US wheat must be labeled if it is in an item. There is a risk of cross contamintion if you purchase some...
  10. ravenwoodglass
    You have gotten some good advice already so I don't have much to add. As far as how much gluten to eat before testing you need to consume a slice or two of bread or a couple servings of a gluten food for about 2 months or so before blood work. They say 2 weeks is enough before an endo but most doctors will not do an endo without the blood test first. Talk...
  11. ravenwoodglass
    Glad your challenge is over and you can now heal. Sometimes the body gives us answers the most clearly. If there is anything that we can help with feel free to ask.
  12. ravenwoodglass
    Coffee is fine. I have 3 cups every morning. If you tolerate dairy I would suggest skipping those flavored creamers at first. They are full of stuff with which you might have issues. One nice way to flavor coffee I found was to get vanilla beans, crack them and place them in a jar of sugar. Shake once in a while and in a couple days you will have a nice flavored...
  13. ravenwoodglass
    Take your doctors advice. If she did blood work that suggested you have a gluten issue you likely had positive celiac blood tests. Celiac can effect the nervous system, as well as many others, not just the GI tract. Your issues may resolve on a strictly followed gluten-free diet but you need to keep eating gluten until after you have seen the GI doctor and...
  14. ravenwoodglass
    It sounds like the diet is helping him and it won't interfer with any testing for other problems that may be going on. I am a bit late to this but want to address the negative gene test. Despite those two genes not being present he could still be celiac. There are other genes associated although they are more rare. I am an example of a firmly diagnosed celiac...
  15. ravenwoodglass
    Try and stick with as much whole unprocessed food as you can for now. Veggies, fruits, potatoes, rice, meats and fish etc will help to aid healing. After you are feeling better for a bit than go add in gluten free treats and convience foods. If you haven't been much of a cook before ask and look at the recipe section for ideas. Best to avoid or limit dairy...
  16. ravenwoodglass
    I wasn't getting the box to reply. The problem seems to have been resolved as no issues today.
  17. ravenwoodglass
    I also use McCormicks for single ingredient and Wegmans brand for mixed as long as the container has the circleG. They make a great garlic and herb mixed that I use almost daily.
  18. ravenwoodglass
    Seems we have done another 'upgrade' to the board. Anyone else having problems replying to posts?
  19. ravenwoodglass
    You would not need to be back on gluten for that test as it is to see if the diet is helping bring the antibodies down. That combined with resolution of symptoms is diagnostic and some doctors will give a diagnosis based on the results despite a negative biopsy.
  20. ravenwoodglass
    No an allergy would not cause those antibodies to be high. The small intestine is very big and damage can be easily missed. Do get on the diet strictly and then in 6 months or so get your antibodies retested. They will likely have come down and your symptoms improved.
  21. ravenwoodglass
    PT physical therapist OT occupational therapist
  22. ravenwoodglass
    Please don't rely on gene testing to know for sure whether you could be celiac. There are more than just the two most common genes tested for that are associated with celiac. If you happen to have one of the more rare genes you could do a lot of damage if you are celiac and you and your doctor dismiss the possibility. You have to be on a regular gluten diet...
  23. ravenwoodglass
    If you are taking that much you are overdosing yourself. Did your doctor tell you to take it at that level? If not stop and just take the recommended dosage. Overdosing can cause liver damage and even strokes. https://www.livestrong.com/article/101814-symptoms-niacinamide-overdose/ https://www.healthline.com/health/food-nutrition/niacin-overdose...
  24. ravenwoodglass
    If you take her gluten free that will cause a false negative with testing. See if you can get your GP to order a complete panel today. When you call ask to speak to a nurse. They can relay info to the doctor between patients. Also ask for an appointment or a call back with the doctor. Some doctors will give an official diagnosis based on decrease in anti...
  25. ravenwoodglass
    Good luck at the clinic. I hope they are able to help.
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