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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    As others have said if you have been gluten-free you are going to show up negative. It is also possible to have celiac, be eating gluten and still show up negative. Up to 20% of us will according to the NIH. If the diet was helping keep with it. We can of course have other issues in additon to Celiac. I don't know much about MC so I can't add much on that...
  2. ravenwoodglass
    Do make sure they are keeping a check on the B12 levels. After we have healed many of us can metabolize it again and super high levels of B12 can have the side effect of causing anxiety. I am not saying not to take it just to keep an eye on the levels. My last blood work showed my B12 levels to be far,far above what they should be so I dropped the sublinguals...
  3. ravenwoodglass
    He may have had RA the whole time and not celiac. My celiac associated gene is considered to be an RA gene most of the time here in the US. In other countries it is acknowledged to be a celiac associated gene but doctors here are a bit slow. I was very thankful that no gene testing was done on me prediagnosis as I would have been diagnosed with RA with IBS...
  4. ravenwoodglass
    No, I was laying on my bathroom floor freely bleeding from the gluten challenge that the GI doctor demanded. It got me my 'official' diagnosis but at a large cost. I show a false negative in blood tests and had been misdiagnosed for many, many years. My PT insisted I see an allergist for an elimination diet. After a lot of nagging I did so. When I added gluten...
  5. ravenwoodglass
    Did they give you the reference ranges for the blood tests? If so it would be helpful if you post them here. Since you have had the biopsy you don't have to wait for the doctor to give you the results to start the diet. As far as Enterolab is concerned I would consider it. They check for antibodies in the stool which seems to be a bit more sensitive than...
  6. ravenwoodglass
    Research has shown that after we have been on the diet for 5 years our chances of developing intestinal cancer is the same as the rest of the population. I would do my best not to let it worry me if I were you.
  7. ravenwoodglass
    Your doctor sounds pretty ignorant about celiac. I would opt for Enterolab testing if you can fit it in your budget. They can do the gene tests and also test for antibodies in the stoolfor up to a year after you stop eating gluten so you wouldn't have to do a challenge. They can check for just gluten or you can also do eggs, soy, casien and I think yeast...
  8. ravenwoodglass
    There are over 200 symptoms associated with celiac. Here is a link to the main pages article on them. https://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html
  9. ravenwoodglass
    Not really, your husbands positive results were on the low side. Many doctors are very reluctant to diagnose celiac. It is not unheard of for folks with a low positive to be told to continue to eat gluten so they get sick enough for a higher result on the blood panel. The same happens at times with the biopsies. Doctors will see blunted villi and tell the...
  10. ravenwoodglass
    Genetic testing is a tool but not by itself diagnostic. It can be a part of the diagnostic process but is not conclusive on it's own. How are you feeling on the diet? Are you being strict? Did your doctor do blood tests before you started the diet? What were the results? Have you been accidentally glutened or challenged it? If so what happened? If the diet...
  11. ravenwoodglass
    It's funny how we are all so different. I tried the L-Theanine with horrible results. I tried all kinds of different supplements and nothing helped. I never had relief with any scripts because the doctor kept insisting I was depressed and medicating for both the anxiety and the depression at the same time. It wasn't until they realized I was really not depressed...
  12. ravenwoodglass
    Yes.
  13. ravenwoodglass
    He actually already has proof on paper in the blood tests. Both were positive. If he want to have a biopsy, which has a chance of being a false negative, he needs to go back to a full gluten diet for a at least a couple of months. If he has only been gluten-free for a couple months he is still healing. The fact that his back is so much better does not...
  14. ravenwoodglass
    There can be false negatives on both blood and biopsy so do try the diet strictly for a bit no matter what the results.
  15. ravenwoodglass
    Are you still eating gluten? If you are you may be having a reaction to gluten rather than the toothpaste. Some of us will get mouth ulcers. So it may not be the toothpaste that you are reacting to but instead the toothpaste aggravating the mouth sores. If you can get Tom's of Maine there that companies toothpaste is gluten-free and they clearly list the...
  16. ravenwoodglass
    Have you been able to talk with anyone at the doctor's office yet?
  17. ravenwoodglass
    The fact that he is not allergic to wheat is of no relevance. Celiac is not an allergy. His total IGA is pretty low so that would throw the IGA tests off. It could cause a false negative. However his IgG was postive which is the test that I think would be looked at with an IGA deficit. Unless you plan to have an endoscopy done by a GI doctor I would get...
  18. ravenwoodglass
    I saw it in the general list of the ingredients they use in their vitamins. I didn't know which one you are taking so I looked at the general ingredients and what they are sourced from. Looking at the Women's One Daily they don't list the barley grass so it may not be included in that particular supplement.
  19. ravenwoodglass
    I am glad you went to the GI you did and not your freind.It might help if you and your husband can sit down together with your GI and talk. It can be hard for our loved ones to accept that we are celiac because it really does impact their lives also. They have to watch out for CC, brush their teeth before a kiss, cut down or out eating out etc. The gluten...
  20. ravenwoodglass
    This is a very valid point for those who are newly diagnosed. I thought I had issues with some gluten free products in the beginning and it took a while to find out I am also sensitive to soy. It can also take a while to realize what a glutening feels like. Many of us, myself included, have a definate progression of symptoms from gluten that we don't get...
  21. ravenwoodglass
    You have had a positive blood test, the endo is done and now you can start healing. You don't need to wait on the endo results to get the diet started. You are one of us. Welcome and ask any questions you need to.
  22. ravenwoodglass
    Does your statement that you spent a week in agony waiting for test results and that you don't want to go back to a gluten diet mean that you have been gluten free. Did you get a good response from the diet? If so keep it up. False negatives are not uncommon, especially if you have been gluten free for a while. Sometimes we have to listen to our bodies and...
  23. ravenwoodglass
    This is only my personal opinion but I would keep him gluten free and consider the biopsy that was already done, combined with his response to the diet enough. I would not torture this poor kid any further so that the doctors can have enough damage for them to be happy. Keep him and his sister gluten free and let them heal.
  24. ravenwoodglass
    I just took a quick look at the ingredients. With Barley grass in there I wouldn't touch them. Unfortunately they can call them gluten free even if they contain barley or wheat grass. Also unfortunately most of us will react.
  25. ravenwoodglass
    As hard as it is going to be I would strongly suggest that you avoid eating out anywhere for a while. You will be taking less risks and will heal faster. I am sorry you are feeling so badly, it is hard at first. Some of us find it helpful to always carry a supply of safe for sure gluten free snacks and investing in a thermos and a insulated lunch bag can...
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