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roxieb73

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

Everything posted by roxieb73

  1. I see this one for Adrenal support is it common for adrenal problems in Celiac? I just ask because I have had Adrenal problems for sometime now.
  2. Thank you Chad! Isn't it amazing how much difference it makes. Thank you for sharing and I am so glad you didn't let the "It's negative" statment stop you from trying a gluten free diet.
  3. I completely agree with you and someday I know I will be in the Celiac umbrella. Until then I will be content to tell people I have an Autoimmune Gluten Intolerance and get really sick if I eat it. I am just so happy to have a reason I am so sick. Not just a reason but a way to FIX the problem. I am actually looking forward to my crusie in 8 weeks!...
  4. Thank you Skylark! I guess I am just a little scared to say offically that I have celiac. I am Gluten free almost 2 weeks now and already starting to feel better. My sister in law was amazed yesterday at how much better I am in such a short period of time. She is a nurse. I do have doctor approval to do Gluten free diet and he put me on a ton of vitamins...
  5. They say that because my Gene testing was DQ1 and my rash was inconclusive for DH. It is either DH or Lichen Planus both of which are auto immune reactions to gluten but Lichen Planus isn't diagnosed as Celiac.
  6. Ok I misunderstood. Can you get copies of your labs to see what they say? I would be interested to know what genes you do have. There are other genes that cause Gluten intolerance. I am double DQ1 and have most of the symptoms you talk about. Including the dangerously low vitamin d. Hopefully this new place will be able to help you figure it all out.
  7. DO NOT EVER GO BACK TO THAT DOCTOR!!! OMG what a quack! Ok sorry but what you have written makes me soo mad! You have the 2 classic DQ2 and DQ8? Those ARE the celiac genes! How is that low risk? Plus IGA deficient? You need to see a new doctor ASAP. I am glad you have an appt somewhere where they know what they are doing. BIG BIG Hugs!
  8. Well all in all it seems iron and vitamin d are the main ones with b-12 ferritin and calcium to follow. I guess it all depends on where the damage is done.
  9. I do have elevated liver enyzmes. I know there is a link. I also have high cholesterol and had high blood levels till I quit absorbing iron now they are normal but I am iron deficent. So yes it could all be realated.
  10. Oh wow was just reading your info in your signature. My rash on my leg is almost 3 months old. No wonder they couldn't diagnose it. Grrr Oh well. I guess it really doesn't matter. They did confirm that it is a gluten related rash. That comfirmed it for me. Especially after all the info I have gotten here on being double DQ1. All I need to know is my symptoms...
  11. Blood tests..... Negative Gene tests..... Double HLA DQ1 Subtypes (5,6) Vitamin panels...... low in B-12,Iron,Folic Acid,low normal Mag, Severe Vitamin D deficiency Leg biopsy....... Inconclusive could be DH, could be Lichen Planus but wouldn't commit to either. (both autoimmune Gluten reactions) Final diagnosis... Fibrosis, with T-cell changes...
  12. I have these EXACT same symptoms. I am now gluten free one week and starting to feel better. Next week I start PT to regain some muscle strength. Big hugs to you I know how bad that is and the impact it has on your life. I hope you get back on a gluten free diet soon so you can start to feel better. Roxie
  13. This right here is why you need your labs!!! You were gluten free during the testing? OF COURSE IT IS GOING TO COME BACK NEGATIVE THIS TIME! The fact that she said "this time" it is without a doubt means last time there was doubt! You need those labs keep eating gluten free and post the results when you get them. I have a feeling someone isn't giving you...
  14. Even if you go through the testing nobody can promise you a diagnosis. I am through the testing finally and the best I can hope for is an Autoimmune Gluten Sensitivity. I say save yourself the hell. I did it and it isn't worth it! I am only day 2 gluten free and already feeling better. The tests that really helped me were genetic testing and vitamin levels...
  15. Not a lot of options with steroids. I wouldn't go back on it after that kind of a response. Ask about Dexamethasone.
  16. Kind of like making my own tv dinners. I like it! That is an awesome idea!
  17. It was crazy there 2 hours to check in and prep for a 15 min procedure. lol Yes they put me out but not intubated. I had my IV in and in the room laying on my side. They put in a mouth gaurd (I am assuming to guide the tube down my throat). Then the I was told the medicine "may burn". Those are the last words I remember next second I was in recovery. I didn...
  18. Wow hadn't even thought about that! Thank you! I will call in advance tell them it must be Gluten free.
  19. My endoscopy was yesterday. I wasn't on at all yesterday. lol I have been googling gluten free receipies today. lol Tonight is steak, veggies and roasted garlic potatos.
  20. Oh I will I have a lot of awesome new receipies to try. I just haven't gone shopping yet. Trying to find something Gluten Free I could take to work!!!!!!!!!! lol All I could find were oranges and potatos. lol
  21. I am so glad all the actual testing is over and I can be gluten free. Took biopies and one in the stomach to look for bacteria. Also told I have a hiatal hernia and now get to do the lovely Upper GI seires and delayed gastric emptying tests. However they do not provent me from being GLUTEN FREE!!!!! I am so happy. Starting off easy so I don't mess up. Oranges...
  22. Yay! Roxie is going gluten free now! Let us knkw how ur doing girl im nervous for ya. Im sure you will post your results for the scope

  23. If you look at my labs above you will see optimal ranges and 274 IS low! My D is low too at 9! Funny I am also iron deficient but in the "normal" range. However normal is more than 40 but where they want you to be is 110! Big difference. My %saturation is %13 and low. All my levels continue to drop. I had them tested 2 months ago and my % saturation was...
  24. Seems Iron and Vit D are common or is it they are just more often tested??
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