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ravenwoodglass

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by ravenwoodglass

  1. You can retest her antibodies in 6 months or so. Her resolution of symptoms and decrease in antibodies is quite diagnostic. She got caught at the Type 1 level, as posted above, and that was a lucky thing. Good to hear she is already improving. make sure you let other first degree relatives know to be tested if they haven't already done so.
  2. Welcome to the board. You do sound like you could be in the right place. Testing for celiac would be a good idea with your symptoms and medical history. You do need to be eating a regular gluten diet for testing though. If you have been gluten free or gluten light that can cause a false negative. You don't have to eat a lot. A couple slices of bread worth...
  3. You said this before which makes me wonder if you had been gluten free or gluten light before you had celiac testing. If you were you need to go back on a regular gluten diet for 3 months or so and then have the celiac panel rerun.
  4. I get neuro symptoms within an hour or so but the severe D takes about 3 days. My stomach will get very noisy before that but the D only last a few hours. The fatigue and brain fog usually lasts a few weeks along with muscle and joint pain.
  5. If you had a full celiac panel and biopsy then now you give the diet a good strict try to see if it helps.
  6. You could jsut drop the stuff off at a local food bank. They would appretiate it I am sure. Then just send the $68 to whatever organization you think will be the best at using it. You also could see if your cities Celiac Support group is getting stuff together and if they will include what you have in their shipment.
  7. If they haven't done so already make sure those family members know to get tested for celiac.
  8. Thanks for the info on Capt Morgans. I usually go just for Bacardi cause I didn't want to take a chance.
  9. You may want to talk to other parents also. This may not be celiac related. It may be due to something contaminating the pool or a new sensitivity to a pool chemical. When we have celiac we tend to attribute everything to that and sometimes the problem isn't related to celiac at all.
  10. I feel I am falling to the right even though I wouldn't be moving. It is one of the first signs I have been glutened. I had severe ataxia before diagnosis and am thankful that I only get that feeling for a few seconds now and only when glutened. I was so off balance before diagnosis that I used canes and walls. Felt like I was walking on a boat in a high...
  11. play doh, some non-toxic paints, non-toxic glues and pastes are examples.
  12. I wonder if this is happening to other kids in the swim class. Might be worth checking if you can. Maybe somebody made an error with pool chemicals. You could also talk to your local heath dept and see if they will check a vial of the water for possible contamination with bacteria. Has he just started a new school year? Is he taking any classes like...
  13. Welcome. Have they rerun your celiac panel or done a repeat endo to see if you might have some gluten sneaking in somewhere? Are you eating oats or cereals like Cheerios, Lucky Charms etc? Many celiacs will react to oats the same as they do with the gluten in wheat. Do you have a significant other who eats gluten? If so they need to brush their teeth before...
  14. Some doctors will give a formal diagnosis if retesting 6 months or so down the line your antibodies have dropped and your symptoms have been relieved. Worth checking if you don't want or can't go back on gluten for the endo.
  15. Do have them run a full panel as well as your vitamin and mineral levels and inflammatory markers would also be a good idea. Your doctor may be able to just give you a script for the tests or call in the order. It is good to make sure nothing else is going on but checking if this is celiac related is IMHO the first thing you should rule out. Think back...
  16. I like Thai Kitchen Rice Noodles. I find them in the Asian foods section. Less expensive than many gluten-free pastas and they make an Angel Hair that is my favorite. For stuff like elbows I often will get Tinkyada but it turns to mush when there are leftovers. For sauce I live in an area with a Wegmans so I buy their store brand. A very celiac friendly company...
  17. Welcome to the board. Sorry you are going through all this. To be tested for celiac you do need to be eating gluten. It doesn't have to be a lot. A couple slices of bread worth would be enough. Most doctors will want to do an endo to check and see how much damage is there. A full Celiac panel would also be needed. There can be false negatives with both though...
  18. You could call your doctors office and tell them what happened. Sometimes the doctor's office can contact the insurance company to let them know the test was medically needed. In some cases it is also a possibility that the wrong codes were put in for the reason for testing. In both instances the bill can be resubmitted. If the tests were done at your...
  19. Celiac inflammation definately caused asthma in me also. I was on Singulair and had an albuteral inhalor. Never needed either after I was diagnosed. There is definately an association between celiac and asthma IMHO. I wonder if in some cases both the inflammation and brain impact might be behind some cases of apnea.
  20. So sorry to hear you are in so much pain. Don't go gluten free yet as you need to be eating gluten for the tests to be accurate. What tests are they doing? They should be doing a full celiac panel and an endoscopy with at least 6 biopsies. As to the amitrytiline it is often used at very low doses (like what you were prescribed) for pain. It helps some folks...
  21. That could be very dangerous. When done in a hospital setting the fecal material has been treated to destroy anything that might be harmfull. They aren't just inserting raw feces. It has, from what I read, had some success with folks with Cdiff.
  22. Were you eating a regular gluten full diet before your blood work was done? If not them you will have a false negative. Some doctors will consider a low positive to be negative or want all the tests to be positive. You may want to get copies of the tests and post the results and the lab ranges and post them here. Many are familiar with the tests and can...
  23. Welcome. The oat flour is a no go since it doesn't specify that it is certified gluten free. Newly diagnosed celiacs should avoid even certified oats until well healed as some of us will react to them. You may also want to avoid dairy for a bit if your GI distress is agravated by it. You may well be able to add it back in after you have healed. If you are...
  24. Yes it is quite possible. I am one of those oddballs myself with a double DQ9. Have you had the celiac panel blood tests done yet? If not stay on gluten until that is done.
  25. A couple more things I just thought has your GP rerun a celiac panel to make sure that gluten isn't somehow creeping in? That should be done to make sure the hairloss isn't gluten related. Can you think of any new food, shampoo etc that you began using before the loss started? For example if I use a shampoo with soy protein that will cause me to lose hair...
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