Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Testing Done.

jenny2

Recommended Posts

jenny2 Rookie
jenny2
Posted

can someone tell me if my blood tests come back negative for Celiac disease should i ask the doc for a upper endoscopy done? i had negative blood tests for celiac 8 years ago but postive upper endoscopy with flat villi. the docs thought that i didnt have celiac so i have continued to eat gluten for 8 years. flashforward to today, i am having alot of trouble with losting weight, and digestive issues. i just need so advice, thanks

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

If you had a positive biopsy there is a good chance you have celiac. Have you had the blood tests redone or did you get a copy of them? Some doctors will call a low positive negative. You might want to get bloodwork redone and then give the diet a good strict try no matter what the results. Or you could just go gluten free. Since both blood and biopsy have high rates of false negatives but not false positives the positive biopsy was significant in spite of the negative blood tests. Many doctors would have diagnosed with the positive biopsy since that has been considered the 'gold standard' for diagnosis.

JoshB Apprentice
JoshB
Posted

False positive biopsies are possible, but they would could involve some other fairly serious issue, and you ought to know if that was the case.

The more common cause of false positive is lab mistake; apparently it's really easy to flip the sample the wrong direction and hide the villi (Open Original Shared Link). Maybe that's what the doctor thinks happened? Or maybe your positive was only for minor changes that can be explained by several different conditions?

I'd be asking your doctor to explain why he thought you were negative despite the biopsy. There should probably be some answer other than "Oh... Well, the blood work wasn't positive."

jenny2 Rookie
jenny2
Posted
  • Author

I got retested for Celiac on friday, my gastro doc told me that he would call me with the results of the test. I am having so many problems right now and have lost 21 pounds in 1 month and continue to lose weight, i have mouth ulcers and alternating diarrhea and constipation. i am very worried that i am going to lose more weight and my gastro will tell me that the blood tests were negative. then what will i do? maybe just go gluten free once and for all.

MissKris2 Newbie
MissKris2
Posted

Oh, wow. I hope the blood tests clear things up for you. Between your symptoms and the positive biopsy you had before, it sure sounds like celiac.

Roda Rising Star
Roda
Posted

Yes hon, go gluten free you've got nothing to loose except maybe your debilitating symptoms.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

I got retested for Celiac on friday, my gastro doc told me that he would call me with the results of the test. I am having so many problems right now and have lost 21 pounds in 1 month and continue to lose weight, i have mouth ulcers and alternating diarrhea and constipation. i am very worried that i am going to lose more weight and my gastro will tell me that the blood tests were negative. then what will i do? maybe just go gluten free once and for all.

Wow...that's a huge weight loss, hun! :o When you say you were retested on friday, do you mean blood tests? Hopefully you will get some answers, but even if they are negative, you should still give the gluten free diet a good try (2-3 months). Sometimes gluten intolerance doesn't show up in your blood work, but it still wreaks havoc on your body. :(

Definately go gluten free, no matter what the test says.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jenny2 Rookie
jenny2
Posted
  • Author

yes they drew blood tests again on friday for Celiac panel because of the problems i am having with severe weight loss. i do not know why i am losing all this weight, i am eating but sometimes i dont have any interest in food and have alternating bouts of diarrhea and constipation. if i go gluten free right now and then they want to do a upper endoscopy would the results still show if i was gluten free? i dont know how long it takes to get the Celiac blood tests back.

ravenwoodglass Mentor
ravenwoodglass
Posted

yes they drew blood tests again on friday for Celiac panel because of the problems i am having with severe weight loss. i do not know why i am losing all this weight, i am eating but sometimes i dont have any interest in food and have alternating bouts of diarrhea and constipation. if i go gluten free right now and then they want to do a upper endoscopy would the results still show if i was gluten free? i dont know how long it takes to get the Celiac blood tests back.

If you are going to have an endo do keep eating gluten until that is done. Even on gluten there is still a chance of false negatives with testing so when all testing is done give the diet a good strict try.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,543
    • Most Online (within 30 mins)
      7,748
    yfuvhg
    Newest Member
    yfuvhg
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.