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ravenwoodglass

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About ravenwoodglass

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    Gardening, photograpy, painting and drawing, textile arts, glass art, reading
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    Upstate NY

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  1. Is this something that is traditionally done by the GI? My endo doc did Vit D, B12, liver, and kidney function along w/ the celiac panel, but didn't check iron. 

    Those tests can be ordered by any doctor not just by a GI as celiac is an autoimmune disorder not strictly a gastrointestinal one the follow up tests, other than an endo if you choose to have one, can be done by any doctor you see.


  2. Did your test results also go to your GP? If you are very ill you might want to see if you can go in and talk to the GP. There really isn't much doubt you are celiac with those test results and you could ask your GP if he/she will diagnose you based on those results. The main follow up you need is testing for your vitamin and mineral levels and a complete blood panel to check for anemias. You should also have a follow up panel after 6 months gluten free to make sure your levels are going down. If your GI appoinment is far off you could also call and ask to be put on a cancelation list if you can get in on short notice. 


  3. That's a great idea, Raven. I don't have time in the summer but once I start taking a day off a week in the winter I could do it. (Unless I break down and DO wind up gettng one.)

    I didn't think I would ever get another dog when I lost my Pooh Bear. Then I found a little Dashound would severe allergies and lost my heart to her.She is a pain in the butt as I have to cook for her even on nights when I have no energy to cook for me but I am so happy to have her in my life. 

    Sometimes they find you too. Shortly after I lost the mother kitty to the one in my avatar I pulled into a parking lot after a heavy storm. I heard a kitten crying and under a bush was a little girl kitten. She was shivering and so forlorn. There were no footprints anywhere other than where she was so someone pulled in and just tossed her out of their car like a piece of garbage. She is the sweetest thing and even though I had two elderly kitties at home she wasn't going anywhere but home with me.  

    When the time is right for you, if it is, you will find some little furball that will need you to brighten it's life as much as you brightened Grommits.


  4. Would she be able to see an allergist? If she can then when you call to make an appointment do ask if they will assist with elimination diets as not all will.

    I would suggest removing the tea, aloe juice and licorice for a bit.

    Keep her on the 4 foods you have her on until she has been feeling better for 2 weeks. Then add in one food at a time in pure form, for example buckwheat cereal plain as opposed to buckwheat pancakes. Keep that one food in her diet for a week unless she reacts sooner. If she reacts wait until the reaction is over before adding in anything else. If no reaction then add in another food for a week or until she reacts. That was the way my allergist had me do my elimination diet. 

    I might also suggest adding in a green veggie like peas. I should also note that my elimination starting point was with foods I rarely ate as my doctor thought those would be less likely to produce a reaction.  I also was not allowed any beverage other than water and cranberry juice, no sugar, salt, pepper, coffee, tea etc. 


  5. Maybe you could find time to voluteer to hold and pet some of the kitties at the shelter if you have time. You obviously were a great pet parent and your kitty was so lucky to have you to love her. It could help heal your pain a bit to spread some of that love around to the kitties there while they wait for their forever homes. Some shelters also need foster parents for animals that for one reason or another need a home environment. Perhaps that might be something you could do when your heart has healed a bit 

    ((((((((((((((HUGS))))))))))))


  6. Are you eating mostly whole foods that you are cooking yourself? Is the popcorn kernals that you pop or one of the packaged ones you put in the microwave? If you are newly gluten free it can take some time to heal and without knowing what you are eating and how it is prepared it is hard to say if you have been glutened or if you may have picked up a virus or if it could be something else. 

    To heal with the greatest speed and safety you need to be cooking whole foods although I know that can be tough for some. 


  7. Do have a talk with your doctor about this concern. You'll need to know what the premedicating is and whether it is for allergies to iodine or whether it is a different form of contrast without iodine. Celiac isn't an allergy so don't know if that protocol would help. Years ago my doctor scheduled my CT specifically without the iodine because of my DH but I don't know if the iodine is a serious concern or not.  They may have developed new contrast materials that are iodine free since then. 


  8. Welcome to the board,.

    Make sure tht the doctor will take at least 5 or 6 biopsies and the biopsies need to be looked at un a lab and can be positive even if the doctor doesn't see anything visually.

    That said with your blood test results you can be pretty certain that you have celiac. Your results were very high. Be sure to read the newbie thread as it will have a lot of info for you and feel free to ask any questions that you need to ask. 

    I hope you recover quickly but it can take some time,. Do drop dairy for a bit until you are feeling better. You can drop that now as it won't impact your biopsy. That may help a bit.  Until your biopsy you will need to eat the equivelent of a couple slices of bread a day. You don't have to have more than that if you don't want to,. Glad you are getting in to have that done so soon. You can start the gluten-free diet as soon as the biopsy is done.


  9. I agree with previous poster. I suffered with DH for over 40 years and it is miserable. If you do have a dermatologist test for it by biopsy do make sure they are doing it correctly and are actually looking for DH. They need to biopsy next to an active lesion. 

    While it sounds odd I also got some relief from swimming in the ocean. I don't know if the salt water just helps to dry out the lesions or what but it did seem to help. My Mom used to use a 'horror' story from her childhood when I was little and would complain too much about the itching. She also had DH and her mother used to open the lesions with a scrub brush and pour salt on them. A very painful treatment as anyone who has gotten salt on a wound accidentally would know. It would however clear her lesions for a short time.

    As to your being Asian. Celiac is now being diagnosed more in the Asian populations from what I remember reading. I started looking into that when I had my genes tested and discovered I have two copies of a gene that originates from Asia or the Middle East. There are some fairly recent peer reviewed articles that are showing it to be a Celiac associated gene. Sorry I don't have a link but the articles can be found with a search. If memory serves me I found them on PubMed.

    I hope you get some answers soon. It would be a good idea to have your doctor run a celiac panel on you. While folks with DH often have a false negative result it wouldn't hurt. Just keep in mind that it may show up negative even if you do have DH. 


  10. Nice to hear you are feeling better and able to get out and enjoy some gardening. Good to hear the allergy treatments are helping. 

    There is something about working in the garden that can be so theraputic. I wish I had more time to do so but work is physically demanding and leaves me too tired at the end of the day to do much other than eat and get ready for bed. Will keep my fingers crossed that the silos won't be an issue for you this year. 


  11. I went to Red Robin today and had the first burger with fries that I haven't had to cook myself since I was diagnosed. I did think it a bit pricey but the burger was cooked the way I like it and even though well done was still nice and juicey. They did bring me the Ipad thing and since I have never used one of those the waiter had to show me how to use it but I liked that multiple allergens could be selected. It is definately someplace I will go to again.  The only thing that I would have liked to have seen is some gluten free deserts but since the burger filled me up well it wasn't a big deal. 


  12. You were no longer a silent celiac when you went for testing. Chances are good, IMHO, that if you get glutened those symptoms will return. Do be aware that symptoms can be delayed and it isn't always the last thing we ate that makes us ill. It could be something from as long as a few days before. 

    Try and stay as safe as you can on your trip and perhaps take some Immodium with you just in case. That may at least help the D.


  13. Took a short road trip yesterday with a really good freind to a gluten free bakery in Upstate NY.

    While a bit hard to find it was well worth the trip. We tried almost everything they had and it was all so good. They only do gluten free and are also soy free.  They have pizza, pies, cakes, cupcakes, muffins (the banana choc chip is to die for), breads (sandwich and Italian, I ate almost all the Italian loaf for dinner last night) and they will do special orders if folks need egg free or Vegan. 

    If you are near Rochester do make a trip. It will be well worth it. We loaded up on enough pastries to keep me happy for a long time. I portioned a lot of it and froze but will likely still gain 10 lbs in the next month. 

    I don't know if they ship stuff but they do have a website that might give that info.

     


  14. Have you been tested for celiac? 

    How gluten free are you? Are you avoiding cross contamination and eating from gluten free menus when you eat out or are you just ordering stuff that seems to be gluten free by description? If you are consuming beer a couple times a week you are not gluten free. If you are not avoiding cross contamination you are likely getting glutened and thus not completely gluten free. There are many precautions that we have to take to be gluten free that don't involve just the food we consume but also the preperation of that food.

    If you are celiac or NCGS and not taking the needed precautions that would explain why your 'IBS' has not resolved.

    You should, IMHO, go back to eating gluten for a bit and then get a full celiac panel done.  


  15. Call your GI doctor as soon as you can. Tell them what has happened since you started the challenge. The doctor may be able to prescribe some meds that might make symptoms more tolerable or may tell you to stop the challenge. When you call do ask to speak with a nurse or ask if the doctor can call you back. 

    I'm sorry you are reacting so badly to the challenge. That happens to a lot of us unfortunately. 


  16. Welcome to the board. 

    I did find my symptoms to be worse at that time of month and they also came and went for years before the serious issues became a daily occurance. Do not go gluten free until after all celiac related testing has been finished as that will cause a false negative on testing.  With the symptoms coming on after a meal do make sure your doctor has tested your blood sugar complete with the A1C if it hasn't been tested already. The drowsiness could be a blood sugar crash so it would be a good idea to rule that possibility out also.

    Hope that you get some answers soon.


  17. You mentioned you are in another country. Do you know what their labeling regulations are in regards to allergens and gluten? Some countries consider Codex wheat starch to be gluten free could that be in some of the processed products you are consuming? Many of us can't tolerate it even though technically it is gluten free. Could gluten be sneaking in somewhere either in processed food or from gluten eaters you are living with? Have you read the Newbie 101 thread at the top of the Coping section? If not do go there and give it a good read. There may be gluten sneaking in somewhere or you simply may be not fully healed yet.

    Hope you feel better soon.