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CherylS

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Everything posted by CherylS

  1. CherylS
    I have inflammation but no damage, my doctor said it's not celiac. She wants to do a capsule endoscopy to see what's going on. They did another CBC, my iron and ferritin are still low (at the levels they have been this entire time) and my Hemoglobin is 12, which is the lowest edge of normal. I'm not sure how my hemoglobin is rising without my iron levels...
  2. CherylS
    Wow, so glad you got results so quickly! Still waiting here, lol. Are you feeling better gluten free?
  3. CherylS
    Imagine my dread and excitement as I received a letter from gastroenterologist in the mail today! The results of the biopsies of the nodules in my cecum were listed as no sign of cancer. The celiac biopsies weren't included in the letter. Hopefully I will receive them tomorrow. I will call Monday and ask about them if I don't receive them in the...
  4. CherylS
    I thought it was bad waiting for EGD and biopsy. It's worse waiting for results. I had the procedures done Friday, according to the patient portal, my results arrived Tuesday. I have an appointment next Thursday for results follow up. Normally, they post the results on the patient portal, the fact that they haven't posted them has a me a...
  5. CherylS
    My GI doctor has a patient portal where you can view results, send messages, etc. On my care plan it said something about awaiting pathology results from small intestine and cecum. They took that goal down yesterday. It means my results are there, but they didn't post them in the results section. It's making me anxious. The day of the procedures I asked...
  6. CherylS
    Some people with celiac test negative on blood test. I have read of people feeling worse when they stop gluten because of detoxing. I hope you can get some answers soon.
  7. CherylS
    They put some sort of thing in my mouth to hold it open for the scope, it made me drool because I couldn't close my mouth to swallow. I had the propofol as well. I do remember trying to move the pillow (I was on my left side) because there was drool on it, lol. The things we worry about while drugged up, haha.
  8. CherylS
    I had my endoscopy on Friday, with a colonoscopy added in for a little more excitement! It took a little over a half hour for both procedures. I'm not sure how many biopsies she did on the endoscopy, when I asked I was told several. Think of it this way, whatever is going on has and will be going on if you know or not, so you might as well know...
  9. CherylS
    There was some nodularity in my cecum, I think she wants the capsule endoscopy to make sure my small intestine doesn't have any nodules, since it's right there near the cecum.
  10. CherylS
    I'm not a doctor so I can't diagnose you, but I wanted to let you know that I hope you get some answers soon. I hope they also checked your liver enzymes. You have the exact symptoms I had when I was diagnosed with autoimmune hepatitis.
  11. CherylS
    I read the report of the colonoscopy. It says "localized nodularity was noted in the cecum. Multiple cold forceps biopsies were performed for histology." I'm trying to remain calm, but of course my brain goes to colon cancer. She said there were no polyps, which gives me a little hope that I'm fine. I think she probably wants to do the capsule endoscopy...
  12. CherylS
    Usually when I itch, it doesn't go away. I usually get the itch and bumps on my abdomen and shins, sometimes fingers and toes. The best way I can describe it is if fire ants were biting me and someone wrapped saran wrap around it. It's a burning itch and scratching makes them sting, especially if they open up and are exposed to air. It's a no win. I may...
  13. CherylS
    I have an itchy rash too. I also tested negative on celiac testing, but positive on genetic. I've read it's somewhat common for people with DH to test negative to celiac testing. I just got biopsies and will hopefully know something next week.
  14. CherylS
    I had EGD with biopsies and colonoscopy today. I should have results of the biopsies by Thursday, I have follow up appointment with my doctor on January 21. I truly believe I took a hit as a forming embryo and survived. About 20 years ago I learned that I was born without a gallbladder. Today's EGD revealed that I have ectopic pancreas in my...
  15. CherylS
    I'm finally getting my biopsies on Friday. I talked to the GI doctor's office today. They are going to look at my esophagus, do the celiac biopsies, take a stomach biopsy to look for H. Pylori, and do a colonoscopy after that. I'm glad to finally be at the point of getting this done. My procedure is Friday and I'm starting the Whole30 on Saturday...
  16. CherylS
    So glad you are getting a biopsy. It sounds like it will be worth the wait.
  17. CherylS
    I had a similar question, I have the HLA DQ8 but not the HLA DQ2. I asked but nobody was able to answer. I emailed my GI doctor and asked for an explanation and she told me a very basic layman's explanation that i have one of the celiac genes.
  18. CherylS
    Hi and welcome. You definitely have a lot going on. Hopefully you get the results of your tests soon and you'll be able to go from there. If your celiac panel is positive, will they do a biopsy to confirm? If so, you will have to eat gluten until the biopsy is complete. I'm no expert, but I believe people with celiac can have problems with lactose...
  19. CherylS
    It is my understanding that the biopsy is the gold standard and if shows celiac disease, you have it. I suggest you get a second opinion, ask for copies of your biopsy report and labs and find a GI doctor who knows about celiac disease.
  20. CherylS
    I received the bill today for my celiac gene test that was performed on 11/19/15. CPT 81376 HLA CSII LOW RES ONE LOCC 99.96 CPT 81382 HLA CLSII HIGH RES ONE LO 108.12 VENIPUNCTURE 30.41 INSURANCE DISCOUNT 34.73 I have Anthem insurance, this was performed by Compunet in Ohio, my total was $203.76. They checked for HLA DQ...
  21. CherylS
    I tested Negative in August on the celiac panel. My symptoms continued and I had to go back to my doctor for a follow up on my anemia. She referred me to a GI doctor because my numbers didn't improve. The GI doctor felt that I didn't have celiac, but she ran the genetic test to be thorough and so that we could confidently eliminate it from the list of potential...
  22. CherylS
    I also realize that this is an old post. My biopsy is January 8, my choice, I needed to wait for the new year because of my insurance. I regret it and have considered calling off the biopsy so I can stop eating gluten to see if I feel better. I feel like I really don't have celiac disease, maybe an allergy. My celiac panel was negative, but I am positive...
  23. CherylS
    It is currently a difficult disease to diagnose, with all of our medical technology! I think that in generations before us, it was even more difficult to diagnose due to the variation of presentations, numbers of symptoms, and lack of technology. I'm in the process of being diagnosed with or without celiac. I do have one of the genetic markers...
  24. CherylS
    I have the HQ8 gene as well and not the HQ2. I also tested negative on my celiac panel. I have AIH and chronic iron deficiency anemia. I'm getting an EGD with biopsies and a colonoscopy January 8 to see what's going on. You know yourself best and if you feel this is what is going on, you should push for a diagnosis. I'm not sure you were eating gluten...
  25. CherylS
    Thank you, I was thinking I was crazy. When it's on my limbs it's bilateral, the worst part is around my belly button and my lower abdomen, that's where it always is. It's currently on both of my calves (interisting about pressure spots because I just got some knee high boots I've been wearing a lot). I also get super itchy on my shins, but I don't...
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