Jump to content

Justscared

Advanced Members
 View Profile  See their activity

  • Posts

    26

  • Joined

  • Last visited

 Content Type 

Profiles

Forums

Events

Blogs

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

Everything posted by Justscared

  1. Justscared
    Panel came back negative (results below). I guess I am now going to take the gluten out for the truly gold standard. It is amazing how many people without Celiac swear they feel so much better when completely off gluten. This has been quite the roller coaster - thank you so much everyone for your support. I did learn a lot - now if only I could figure out...
  2. Justscared
    Thanks everyone again. Just wanted to write an update - my GP ordered the panel, so I had blood drawn this morning after eating cake and other gluetened things all week-end. Now I will just be waiting ...it may take up to 2 weeks, but they said probably not that long. Keep praying my GI was right - as he did not even want to do the blood panels.
  3. Justscared
    I meant "CELIACS-CELIACS". :-) As in not just "gluten sensitive". Those with flattened villi on the biopsy, positive blood tests, etc.
  4. Justscared
    I have already contacted my GP via the health records system they have online but I will also call her to request the blood panel over the phone. Their office was closed today because of snow and bad driving conditions. So I will try to get those blood tests anyway, for peace of mind. This process seems so frustrating that I think a genetic test that could...
  5. Justscared
    In that case, what would be the role of the blood tests? If they come out negative, I would still have to do the 6 months gluten-free trial, if I understand correctly. Then why have them at all? Shouldn't I just go ahead with the gluten-free diet? Let's just also take the scenario where someone has negative blood tests and negative biopsy but embarks...
  6. Justscared
    I asked my GI and he said it was extremely little what he thought he saw during the endoscopy, so he biopsied it to make sure. The biopsy came back fine so for him the case is closed. If the blood panels also come back fine, can I conclude without the shadow of a doubt that I do not have either Celiac or NC-gluten sensitivity? I will ask my GP about...
  7. Justscared
    I thought about it some more. Here are my worries now: The GP might not take me seriously, especially after the GI sent her the biopsy lab report where it clearly says "no evidence of Celiac Sprue". The insurance company will surely not want to pay for this blood panel after a Celiac dx was excluded with a biopsy. What kind of reason should I give...
  8. Justscared
    Oh, gosh...duh! Thank you for reminding me. I guess I will just call my GP and ask her to do the panel. I hope she won't refuse. I was wondering if the 2 days of gluten-free I just had coupled with 2 more days I had two weeks ago could affect the results. Tomorrow I'll eat gluten again, not that I need much encouragement for that, as this is definitely...
  9. Justscared
    I am thinking about asking my GP when I have the yearly physical in a few months. For now, I will stay gluten-free.
  10. Justscared
    Thanks so much, everyone - this really helps. I will check both TJ and Costco for the pre-made options. As for making my own, what kind of flowers should I buy and from where? I know it is usually a mixture of corn, rice, potatoe and taopica flower with some xanthan gum in it. Am I correct? Where could I buy all these separate flowers at decent...
  11. Justscared
    I would appreciate any tip for a really fine gluten-free flour that tastes and performs as close to wheat flower as possible. I am trying to rule out a possible gluten sensitivity by embarking on a 2 months gluten-free journey. MY GI recently ruled our Celiac with 1 biopsy of the small intestine he took during an endoscopy I had done for acid reflux....
  12. Justscared
    Yes, this is what I plan on doing. Today was my first day completely gluten free. I did ask the dr. Whether I should get some blood tests anyway and he said no. So I will just have to try it with the elimination diet. After all, I still have some symptoms I've had for years, including muscle / bone pain all over my back, occasionally flairing cheilitis...
  13. Justscared
    UPDATE, BACK FROM GI. Biopsy results indicate no celiac sprue or infectious microorganisms. Just grade A esophagitis in the lower part of the esophagus from a little reflux. Apparently though, the # of biopsies the dr. took of the small intestine was only 1. He also took 2 other biopsies of the middle lower esophagus - I got a copy of the lab report...
  14. Justscared
    It makes sense. I just never thought that people would continue to rely on processed foods after such a diagnosis. A gl,ute-free boxed prodict may be gljuten-free but it's still a processed thing. The point is to increase your intake of whole foods cooked from scratch. You would think that this would be a wake-up call that would put people in the kitchen...
  15. Justscared
    Well, basically I never understood whether "atrophic duodenum seen by dr. during endoscopy procedure" = "villous atrophy seen by the lab under the microscope". Yes, I will ask for clarification today, including pathology report from the lab itself, Celiac panel (regardless of results) and nutrient panel (regardless of results). Thank you again.
  16. Justscared
    kareng, In fact, no - this is not the case. I have never been gluten-free, definitely not for more than a few days. Actually I have been very much gluten-dependent my entire life. I LOVE bread and feel completely hungry if I don't have it on the side with whatever other foods I am eating; and I have had periods in my life when I literally drowned...
  17. Justscared
    Lord Bless you, Lisa, I know you are right and I will not try to excuse the mindset I have in any way. But I am basically an undiagnosed hypochondriac, I would say severe - and it is extremely hard for me to switch my brain to focus on the positive likelihoods. My brain always reverts to worst case scenarios and desperately wants to weed them out with 1...
  18. Justscared
    I am reviving this long-closed thread from 2011, just to ask people here if they believe such situations are common. I hope and pray that I will discover tomorrow on the follow-up visit that this will be my situation too. During endoscopy dr. sees "2nd portion of duodenum: atrophic" with the naked eye - yet the biopsy comes back negative. If you read...
  19. Justscared
    Do you happen to know how common is refractory celiac?
  20. Justscared
    I read it can take 5 years of perfect adherence to reach the life expectancy of the general population. Thankfully, the endoscopy showed my stomach perfectly normal. The esophagus is inflamed (reflux esophagitis, the reason I went to see the gastro in the first place) - but no precancerous changes. I just wish I could read some encouraging things, maybe...
  21. Justscared
    Thank you GFinDC! I looked at all possible causes and none of them sounds likely in my case - or definitely not more desirable to have than Celiac. Right now I am literally sick to my stomach from reading about the shorter life expectancy of Celiacs and their higher likelihood of malignancy, even in the case of strict diet adherence. I have two...
  22. Justscared
    I just read in a medical document that "villous atrophy cannot be seen with the endoscope. It can only be seen under a microscope". Hence the biopsy. Could I conclude that whatever the dr. saw during the endoscopy that he called "duodenum: atrophic" at the eye level may actually not be "villous atrophy"? Is "atrophic duodenum" the same as "villous...
  23. Justscared
    Thank you, everyone ...I know you can't help me more and I know I will just have to wait until Monday - and even then I probably won't know for sure because I will have to do the blood panel anyway; and only then, will I know more. I was just fishing for a glimmer of hope that it is not Celiac...but to be honest, I am starting to lose that hope. If the...
  24. Justscared
    GFinDC, Do you happen to know what other conidtions might cause atrophic duodenum?
  25. Justscared
    Lisa, The pathology report DID come back and it only said "acid reflux - esophagitis". Nothing about Celiac. When the dr. wrote "atrophic duodenum" this was only based on what his saw on the screen during the endoscopy; but when I woke up, he said that overall, everything looked pretty good, much better than what he had expected. He did biopsy...
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.