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rez

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

Everything posted by rez

  1. Sorry, I meant many docs do NEED to be educated. I'm in a hurry to get to my son's b-ball game. Sorry for the grammar and spelling errors. Good luck!
  2. We did have a similar experience w/ our peds allergist and our son. The ELISA test clinically are not very proven or accurate. At least that's what he told us. Sometimes it's difficult, but I think we should look at both sides. Being a physician is just like any other profession, there are good and bad. Also, it's hard not to stereotype. No one would...
  3. I'm from Bettendorf. Did you see a gastro at the U of I. Were they good? Welcome.
  4. I think the key here is that Janie is off gluten and she still isn't getting any better. She feels that she needs to know and I can understand that. It sounds like you have a great doctor. There are several complications that can go along with Celiac and I think it is very smart to look deeper. Good luck and ask your doctor for some medication to ease...
  5. This happens to my son too!!!!! His blood test was postive for Celiac and we're waiting for the biopsy. His ears get bright RED and SUPER HOT!!!!!!!!
  6. I think it would definitely be worth looking into. Have your doctor run a blood test, it's a tTG and total IGA serum. Especially since I see developmental delays and Aspergers in your sig.
  7. rez

    ARCHIVED Dr. Guandalini?

    Hi Gayle, The appointment went great! He said he thinks Thomas DOES have Celiac, but it's not a clear cut case. If this is your first post, you probably don't know our history. We have been doctoring for a year and have been through many ill informed docs. Thomas had the wrong blood test done and we were told he was negative. Long story short. We figured...
  8. Good luck Peta. Do they think it's H Pylori? I'm glad you found a good doctor. Good luck and keep us posted.
  9. Also, a gluten challenge is looking for the slightest abnormality in pathology, not necessarily totally flattened villi. There are more subtle changes that come before that. You don't need totally flattened villi to be diagnosed with Celiac. Check out the Marsh System.
  10. Good for you, let me know what you think! Have a great night!
  11. those test ARE NOT specific to Celiac at all. Before you go gluten free, please have your doctor run a tTG and an EMA. Those tests you mentioned aren't even used anymore to screen for Celiac. Get the proper testing done or going gluten free will make the results false negative.
  12. Awesome for you!!!! I think this is a sign to be encouraging to people when seeking a diagnosis. It makes things soooo much easier and I'm glad you feel better. Way to go!! It also goes to show that there are many wonderful doctors out there! So happy for you and your family!!!
  13. A gluten challenge involves a biopsy, NOT a blood test. Serological markers take more time to become postive versus biopsy. You should partner with a good educated GI who is going to perform a biopsy. Dr. Green is an expert on Celiac and I would agree with his challenge instructions. You have to remember, if the pathologist who reads the report doesn...
  14. Good luck. The specialist will be able to shed some light on things.
  15. rez

    ARCHIVED Dr. Guandalini?

    Open Original Shared Link This is Dr. Guandalini's web site if anyone wants more info.
  16. It's called Celiac Disease: A Hidden Epidemic, By Dr. Peter Green. It's hands down the BEST book on the market. It's all fact and very informative. I have read several and thought many were excellent, but as far as accurate, medical information, this is it! I love some of the others for an empathetic feel good read, but when I need the facts, this is...
  17. rez

    ARCHIVED Dr. Guandalini?

    My last email was really a praise to the AWESOME DOCS out there! Again, every profession has good and bad, and it's hard not to generalize, but I have come across two WONDERFUL, OUTSTANDING physicians in this journey. The key is to keep trying and searching and you will find them. Anne, great to hear from you. Yes, Dr. G also saw Haley and recommended us...
  18. Did your son have a tTG test? We have gotten two opinions from very good doctors that would not biopsy unless there is a positive tTG. Of course if the patient is IGA deficient that's another story. My son's tTG is postive, but daughter's is not. She has Hypothyroid, joint pain, allergies, etc. but BOTH docs we consulted said it is not wise to biopsy...
  19. If anything would be positive, I think it would be the tTG or the EMA. According to DR. Peter Green's book, these two are the last two to go negative. My son's tTG was still positive after being gluten free for 3 months. Our doctor, Dr. Guandalini at The University of Chicago Celiac Center, said that the tTG's half themselves every two months. So if you...
  20. rez

    ARCHIVED Dr. Guandalini?

    Dr. Guandalini was FABULOUS!!!!!! He was so smart and informed!! He had an even better personality and bed side manner. He was truly incredible. If you are anywhere near Chicago or willing to travel, I would HIGHLY recommend Dr. Guandalini. He is doing a biopsy on Thomas in a few weeks. He noticed Thomas' iron was low, very common for Celiac, and that...
  21. rez

    ARCHIVED Dr. Guandalini?

    Hello All. I am really anxious for our appointment tomorrow in Chicago. We are seeing a world reknown Celiac expert at the University of Chicago, Dr. Guandalini. I'm hoping he can answer our many questions. I'll let you all know how the appointment goes. Thanks!
  22. Even though your bloodwork isn't positive, maybe a biopsy would help determine the problem.
  23. A blood test is pretty simple. If it's postive, you have your answer. If negative, try Enterolab or just stay on the diet. Good luck.
  24. The range is different for everyone. There is not a standard set of numbers that is normal for all.
  25. Funny that this thread came up as my son's celiac panel was positive and our doctor, we have an AWESOME one, also ran tests looking for anemia and thyroid issues. They all seem so related. My son's ferritin was a 33 and the range for him was 28-365, considered normal. There IS NOT a standard range that's normal for ferritin. It totally depends on the individual...
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