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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    The bloating and C are symptoms. Some of us have C some have D some have both. If you do have issues with gluten the diet will help. It is also not uncommon for celiac to appear or for the symptoms to worsen after a severe stress either physical or emotional. If you are going to persue testing from a regular MD you need to keep eating gluten until all...
  2. ravenwoodglass
    When a test is positive then it is positive in most cases. Your doctor is also taking into consideration your symptoms which are suggestive of celiac. Even with negative test results you should give the diet a good shot as false negatives are not uncommon. It also sounds from your description like you may have ataxia which causes issues with balance. Ataxia...
  3. ravenwoodglass
    You seem to be doing a good job of taking care of yourself. The longer you are gluten free the lower your chance of developing cancer from something celiac related. You know colon cancer runs in your family so I know you will be getting regular screenings when the time comes for them. Try not to stress out about it and just continue on the road your...
  4. ravenwoodglass
    Wouldn't you think they could design some that aren't so durn uncomfortable. I have to brace my feet sometimes for a different reason and have also had to use the hand ones. Makes trying to sleep interesting.
  5. ravenwoodglass
    ((((((((((((((HUGS)))))))))))))) Unfortunately things like this happen. One thing that you should do is contact the FDA's site to report adverse effects from drugs, I have given you the link below and there is a place on the left of page to report on line. If enough reports are made perhaps someday the FDA will ban the use of wheat based starches as binders...
  6. ravenwoodglass
    It would be a good idea to get into a derm and have the area beside the lesions biopsied to check for DH. A diagnosis of DH is a diagnosis of celiac. Just one additonal tidbit, the celiac related gene that I carry is considered an RA gene here in the US but is a recognized celiac gene in other countries. Interestingly my arthritis has been in remission...
  7. ravenwoodglass
    Ask your pharmacist for the leaflet that comes with the drug. It will have the makers name so you can contact them directly. That is the safest and surest way to get an answer. By the way your pharm should be checking with companies not going off a list. Also check you bottle, many times the maker of the drug is on the label somewhere. If it is you can...
  8. ravenwoodglass
    This is only a personal experience based on my own history but for me a big culprit as far as slowing down my healing was soy. Even the slightest amount now that I have cut it out will bring back in the big C and cause my arthritis to flare. It's effects are quite different than gluten, that brings on neuro issues which soy does not. I also have more kidney...
  9. ravenwoodglass
    Before you cut any pill in half contact the company and make sure it is safe to do so. This also applies to script meds.
  10. ravenwoodglass
    A true doctor defined elimination diet starts with only 5 baseline foods which are eaten for about 2 weeks to a month and then foods are added in one at a time for a week each in pure form to check for a reaction. The 5 starting foods are normally stuff that people don't eat on a regular basis. In the beginning stages of the elimination none of the foods...
  11. ravenwoodglass
    Thanks for the info. Pure maple syrup is also gluten-free and since I avoid HFCS is the way I go.
  12. ravenwoodglass
    Suave, Garneir and Dove will label gluten ingredients clearly. Giovanni will also, they are an organic brand that I get either at Wegmans or at my local health food store. Unfortunately they have soy in theirs which I also have to avoid as I have an allergy to soy as well as an intolerance. Until the allergy symptoms started their smooth as silk was my...
  13. ravenwoodglass
    I have never found any fresh baked gluten-free bread in my area. The ones that come frozen and even the ones from Energy are all parbaked and you have to toast or microwave them to be able to use them. I use Kinnickinick Italian white or sandwich bread which comes frozen from the store or if ordered from the company needs to be frozen as soon as it arrives...
  14. ravenwoodglass
    I agree, not all the brown rice syrup uses barley malt, some do though so it is best to call the company and ask before use. The biggest danger seems to me to the companies hiding it malt in the flavorings. If it is in a small enough amount companies can consider it a flavor and flavoring does not have to be declared as to it's components.
  15. ravenwoodglass
    The sublingual I take has 3000 mcg. I avoid all soy except for the lecithin. Luckily I don't seem to have any problems with it. I do have to avoid soy in all other forms including the oil.
  16. ravenwoodglass
    Glad surgery went well and I hope you heal quickly.
  17. ravenwoodglass
    It could so mention it to your doctor. If it is a tablet you swallow and you are celiac you may not be absorbing it in pill form, the reason why we need sublinguals or shots. Also if you take folic acid that can also give a false high reading. B12 is not a vitamin that is toxic in large doses so a trial on it if no other reasons for the neuropathy is found...
  18. ravenwoodglass
    Isn't it great when we feel better. I am glad you have improved so much.
  19. ravenwoodglass
    I am glad to see that you are going to stick with the diet. Celiac doesn't show up on allergy testing. Celiac is an autoimmune reaction and allergy is a histamine reaction. Some allergists can guide folks through an elimination diet but those are becoming fewer. I also had a hard time with being diagnosed because of false negative blood tests. It can...
  20. ravenwoodglass
    How long ago was the endoscopy? If you are not going to have it redone then you may just want to try the diet strictly for a bit. Enterolab can test if you are recently gluten free and I personally would think about getting the test. They also gene test for more than just the typical DQ2 or 8 so that can be quite helpful also. They do not diagnose celiac...
  21. ravenwoodglass
    I had to laugh when I saw this. The first time I planted tomatoes they would do great then disappear as soon as they got close to ripe. I thought neighborhood kids were taking them until the day I looked out and saw my big lab delicately picking the ripe ones and chowing down. I thought I had the only oddball tomatoe eating dog, I guess not. He hated...
  22. ravenwoodglass
    I am not a doctor so I of course can not say for sure what it is that happened but I certainly wouldn't handle wheat products without gloves from now on if I were you. You should run this event by your doctor and see what he says.
  23. ravenwoodglass
    You need to be aware that false negatives for celiac are quite common in young children. I know the diet was hard but 2 weeks is not long enough to know whether it is effective or not. Gluten can be an addictive substance and 2 weeks is barely long enough to get through the withdrawl. That addiction in itself can make for a fussy eater. When my DS was...
  24. ravenwoodglass
    For me the answer is yes. I have strong neuro impact and my right side was much more seriously effected than my left. I even fall to the right from my ataxia. I lost reflexes on the right side before the left and the impact was always more severe on that side. Electromylograms showed a 'dead' right leg but the left was within normal limits. It took about...
  25. ravenwoodglass
    Have you tried the gluten free diet yet? In the early stages of celiac, when I was her age a couple of my most pronounced symptoms were constant stomach rumbling and depression. IMHO doctors are way too quick to prescribe antidepressants in children. Do give the diet a good shot, if you haven't already. Before diagnosis I had taken Amitriptyline in a...
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