Jump to content

  • 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):

Lab Results Negative For (big Words) But Positive For...

capecodda

Recommended Posts

capecodda Rookie
capecodda
Posted

H. Pylori. Ok..so I do have high H. Pylori but it was multigrain oatmeal that got me to the Drs. and I have many symptoms that really fit with Celiac. The page that uses words like t-Transgutaminase (tTG) IgA...Antigliadin ABS. Amylase, Lipase..etc etc came out negative. My question is, can one still have Celiac with such a shining report? It appears that the Dr knew the correct tests to do. I clearly am responding well and immediate improvement with excluding the bad grains from my diet. Unsure about corn though..as I seem to have a rapid heartbeat after eating that as I did when ingesting the mulrigrain stuff. Could be the H Pylori bacteria is also making digestion harder in general.

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

Celiac.com Sponsor (A8-M):


capecodda Rookie
capecodda
Posted
  • Author
H. Pylori. Ok..so I do have high H. Pylori but it was multigrain oatmeal that got me to the Drs. and I have many symptoms that really fit with Celiac. The page that uses words like t-Transgutaminase (tTG) IgA...Antigliadin ABS. Amylase, Lipase..etc etc came out negative. My question is, can one still have Celiac with such a shining report? It appears that the Dr knew the correct tests to do. I clearly am responding well and immediate improvement with excluding the bad grains from my diet. Unsure about corn though..as I seem to have a rapid heartbeat after eating that as I did when ingesting the mulrigrain stuff. Could be the H Pylori bacteria is also making digestion harder in general.

bump. It seems more often than not, from what i read here, that blood work proves negative for celiac though a person may very well have it. Am I correct? TIA.

ravenwoodglass Mentor
ravenwoodglass
Posted
bump. It seems more often than not, from what i read here, that blood work proves negative for celiac though a person may very well have it. Am I correct? TIA.

Yes you are correct. I did not show up in bloodwork and my kids showed a low positive (many doctors would have considered it negative) but we are all clearly and undoubtedly celiac. The best ways to tell are dietary exclusion with no cheating and Enterolab's stool antibody and genetic tests.

plantime Contributor
plantime
Posted

Many times, positive bloodwork only comes around after serious damage is done to the intestines. By paying attention to other symptoms and going gluten-free now, you could very well be preventing very serious illness in the future. An ounce of prevention....

capecodda Rookie
capecodda
Posted
  • Author

Thankyou for the replies! I had a total turn around with eliminating obvious glutens and corn products from my diet. Milk is taking care of the pain from the ulcer so am on the up and up. The GP has referred me to a GI Dr. but not sure how far I will go with that...been through enough at the moment and not interested in endoscopy for the time being!

LonelyWolf307 Rookie
LonelyWolf307
Posted

I've also had problems regarding testing. Because of my symptoms, all of which got progressively worse over a period of about 8 months, and how much a gluten-free diet has helped, I'm certain I'm a Celiac. However my blood test came up negative, and they never bothered to look further into it because it's a "rare" disorder :huh: I think that the only accurate test they can really do is the biopsy, or you could put yourself on the gluten-free diet and see if it improves matters after a month or two. I felt results after only a week or so, and I got worse again when I experimented by reintroducing gluten to my diet (or did so by accident, and found out after the symptoms were present again).

capecodda Rookie
capecodda
Posted
  • Author
I've also had problems regarding testing. Because of my symptoms, all of which got progressively worse over a period of about 8 months, and how much a gluten-free diet has helped, I'm certain I'm a Celiac. However my blood test came up negative, and they never bothered to look further into it because it's a "rare" disorder :huh: I think that the only accurate test they can really do is the biopsy, or you could put yourself on the gluten-free diet and see if it improves matters after a month or two. I felt results after only a week or so, and I got worse again when I experimented by reintroducing gluten to my diet (or did so by accident, and found out after the symptoms were present again).

Months..wow. That's what I am reading here and some folks still have intermittent trouble. My improvements are immediate..from the first baked potato..within 2 weeks the symptoms (aside from the ulcer) have completely calmed.

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

Celiac.com Sponsor (A8-M):


bklynceliac Apprentice
bklynceliac
Posted

yes, it's certainly possible to have it and not test positively. You KNOW however that you have h. pylori, so I would treat that first and see where you stand afterwards. I believe that can be kicked with a couple weeks of antibiotics, which is a lot better than a lifetime of no wheat. So I'd wait to see if you're still sick before comitting to gluten free or paying for enterolab.

capecodda Rookie
capecodda
Posted
  • Author
yes, it's certainly possible to have it and not test positively. You KNOW however that you have h. pylori, so I would treat that first and see where you stand afterwards. I believe that can be kicked with a couple weeks of antibiotics, which is a lot better than a lifetime of no wheat. So I'd wait to see if you're still sick before comitting to gluten free or paying for enterolab.

That's true, but I have had food problems for many years and know that malt causes extreme bloat/gas. Years ago I had diarrhea for a month and they said I had IBS..and when I quit the farina and started eating potatos, it was all uphill. Will have to look inot ulcers too..Maybe you cannot digest grains well with an ulcer.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. akebog
      - akebog posted a topic in Gluten-Free Restaurants
      0

      Fusilli Pizzeria, Miller Place, NY

      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious...
    2. nancydrewandtheceliacclue
      - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      12

      Celiac flare years after diagnosis

      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future.
    3. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      12

      Celiac flare years after diagnosis

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down...
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      12

      Celiac flare years after diagnosis

      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest ...
    5. Peace lily
      - Peace lily commented on Scott Adams's article in Latest Research
      2

      New Study Reveals How the Immune System Learns Which Foods Are Safe to Eat

      Hi everyone well I don’t understand totally,I look for gluten-free only. I seem to be super sensitive. I had a problem the other day don’t know why it happen . I’m the only that handles my food . My husband has pancreatitis he’s fine with me cooking gluten-free I’ve tried doing both it doesn’t work for me strictly gluten-free kitchen. But he can actu...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,061
    • Most Online (within 30 mins)
      10,442
    Francisco1007
    Newest Member
    Francisco1007
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • akebog
      Fusilli Pizzeria, Miller Place, NY

      By akebog · Posted

      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
×
×
  • Create New...