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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    The test you are positive on is specific to celiac. Be careful with the Librax as it can have a sedating effect so driving may be impacted. I never found it to be helpful either and it is not something IMHO that should be used long term. It is time to get a second opinion from a different doctor. If your doctor objects it is time to find a new PCP. Keep eating...
  2. ravenwoodglass
    You could also be glutened by his kisses if he doesn't brush his teeth first. It can be hard to live with gluten eaters but it can be done safely. If you can get him to use just one space on a counter to make a sandwich or other gluten item and perhaps get him to wash his hands after he eats that may help.
  3. ravenwoodglass
    In both the instances of gluten 'hiding' that you are giving it is not actually hidden. It was in the ingredients list! That is not hidden gluten. We need to read labels. We need to read them every time we buy something processed. Is it hard to get used to at first, yes for some of us it is but we do get used to it.
  4. ravenwoodglass
    If what you are taking is a generic make sure that they check at each refill as binders can be changed in generics at any time. In a name brand drug that is not needed as they have to keep all ingredients the same. You can call the maker yourself to check also. I usually tell them I am allergic to wheat.
  5. ravenwoodglass
    Just read the labels. Gluten does not usually hide it will be in the ingredients. For example licorice clearly lists wheat flour in the ingredients it doesn't hide. Single ingredient frozen veggies are usually fine but if there is any kind of sauce if gluten is in it gluten will be in the ingredient list. Read the label on processed items and you will be...
  6. ravenwoodglass
    In the US if those enzymes came from wheat it would have to be listed on the label. If you are going to make statements like that please provide a link to the info. As to the statement that us 'old timers' must be consuming gluten on a regular basis many of us 'old timers' have extremely severe reactions to gluten and we KNOW when that happens. I trust...
  7. ravenwoodglass
    Yea I have more than a few stories myself. Don't lose hope you may recover far more than you thought possible. It can be slow process for some of us. I saw quick improvement with migraines and IBS symptoms. You can speed along the healing by eating as little processed food as possible. Do not go gluten free until all your testing is done. Living in the UK...
  8. ravenwoodglass
    Welcome to the board. Ask any questions you need to and be sure to read the newbie thread at the top of the coping page. Your results were very high. Some doctors will skip the scope when test levels are as high as yours were. Do call the doctor and find out if he does want to do a scope though. Keep eating gluten until you call the office.
  9. ravenwoodglass
    Has your doctor done a celiac panel on you? If not you could call the office and request that they do those blood tests. Do not go gluten free until that is done as it will cause a false negative. Welcome to the board and I hope you get some answers and relief soon.
  10. ravenwoodglass
    Welcome to the board. When the brain and nervous system are impacted improvement can be slow. I know that all too well as I was still improving neuro wise for up to 5 years after being gluten free. A couple of things that I feel helped me a great deal were sublingual B12 and the help of a physical therapist. A PT may be able to help him with the ataxia issue...
  11. ravenwoodglass
    What I used to do was take a full or a half tablet of Immodium before I went to work when I was still having frequent D. Before I got to the point where constant D and joint and muscle pain got too bad prediagnosis that it was impossible to work I would take it so I could work and raise my kids. Sometimes 3 times a day on a doctor's advice. Do mention...
  12. ravenwoodglass
    While you are waiting for the appointment call the doctor's office and ask if you can go in and get the celiac bloodwork done. Tell the nurse since celiac runs in your family that you would like the doctor to have the results in hand at the appointment. Stress the amount of weight you are losing and your increase in symptoms. Do not go gluten free until...
  13. ravenwoodglass
    Are you taking any meds for the other conditions? If so have you checked to be sure that they are gluten free? Have you tried eliminating all dairy and soy? Some of us have problems with those and casien (milk protein) intolerance wouldn't show up on lactose testing. Be sure to check out the newbie thread at the top of the Coping thread just in case there...
  14. ravenwoodglass
    I think this is a good plan. If you are getting CC'd frequently that would explain why you are still positive on the tests. Different folks heal at different rates. You don't want to end up with a refactory diagnosis if what is really going on is due to cross contamination
  15. ravenwoodglass
    My DH was misdiagnosed throughout my entire childhood as poison ivy. Doctors wondered how I would get it even in the winter. Of course they never considered it might not really be poison ivy. I did manage one year to actually get poison ivy ON TOP of the Dh lesions. That was true hell. The derm my Mom took me to said I had gotten poison sumac on top of the...
  16. ravenwoodglass
    If you post the reference ranges for the tests folks will be able to be more helpful.
  17. ravenwoodglass
    In this case the doctor has given her a diagnosis. She is under no obligation to tell the school how the doctor arrived at the diagnosis. She just has to show them the paperwork she gets from the doctor saying the child is celiac.
  18. ravenwoodglass
    She has to be eating gluten for any further testing for celiac so the endo will be a false negative if she has been gluten free. You could recheck her tests at 6 months gluten free and see if the levels went down but I think her recovery on the diet will help you to deal with the diagnosis. As Cara mentioned not all celiacs show digestive symptoms. Some...
  19. ravenwoodglass
    Actually I read it wrong. Your right that her IGA levels are in the normal range although on the low side. I do think the positive test is conclusive though. The choice on whether to biopsy or not is IMHO up to the OP. If the child's symptoms are impacting her severely and the wait is too long for the biopsy personally I would just get her on the diet...
  20. ravenwoodglass
    Welcome to the board. Your daughter has a very low total IGA which would account for the negative with the first test you listed. The one test that is positive is one that is very reliable. Try not to think of this as a life changing diagnosis as much as a life saving diagnosis. You are fortunate that she has been diagnosed while so young though it probably...
  21. ravenwoodglass
    Take that note right into the principal's office and then go from there to the school superintendents. Celiac is after all covered by the ADA. You could make a real stink for that teacher if you chose to do so. If you enjoy subbing don't let one bad apple ruin it for you. (((((((((((((((((((((HUGS))))))))))))))))))))))))
  22. ravenwoodglass
    Call your doctor's office and ask if you can pick up a script or have them call in the order for the full celiac panel. Ask to speak to a nurse and read her off the tests you need done. Tell her also how bad you are feeling and about the new or worsening symptoms. Tell them how badly it is impacting your ability to work. If you can get a short term medical...
  23. ravenwoodglass
    If you were talking about an adult then I likely would say just go gluten free. However your child will need to be safe in school or daycare and in most instances a diagnosis is needed to accomplish that. If either your ped or your GI doctor is willing to give a diagnosis based on her improvement on the diet then IMHO you could skip the endoscopy. If not...
  24. ravenwoodglass
    I like Udi's bread for sandwiches. I take PB&J almost everyday for lunch untoasted. It holds together and has a texture like white bread. They also make a multigrain variety and individual pizzas that are not too bad (In case they have 'pizza day' at at school). About the Ener-g bread. It may have changed over the years but when I was first diagnosed...
  25. ravenwoodglass
    You could contact Facebook and ask them to remove the page. Do you have anyone close to you who is signed up to Facebook? If so you may want to have them log in for you so you can see what is there. I know I would want to see what is there. Personally I think Facebook doing that without your knowledge is creepy but if the page has accurate info you might...
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