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

Can You Test False Negative?


Dani Doll

Recommended Posts

Dani Doll Newbie

I have been struggling with GI symptoms and other symptoms for years. About 2 years ago my GI specialist did an endoscopy/colonoscopy. Right after the procedure he came out and told me he found abnormal inflammed, red areas in my lower intestine and he strongly suspected that I had celiac disease, but the biopsies he took would confirm. When the results came in and he said I was negative for celiac's disease and diagnosed me as IBS with constipation. He had no explanation for my symptoms other than branding me IBS and he had no recommendations as to how to deal with the gas, bloating, constipation, severe heart burn, and stomach cramps I experience on a regular basis.

Last year I was diagnosed with hypothyroidism, which I thought explained a lot of symptoms. However, after a year of being on medication, my GI symptoms persist and I still suffer from fatigue, body aches and pains, chronic sinusitis, and a constant sore throat. Again, my endocrinologist says I am properly medicated for my hypothyroidism and has no explanation for all of these other symptoms.

Is it possible that my small intestine biopsies could have been false negatives? Has anyone heard of this happening? Are there any more conclusive tests for celiac's disease? I am so frustrated and tired of feeling this way. Please help!


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



Celiac.com Sponsor (A8-M):



Brittany2 Apprentice

Hello to you!

There is still hope, and yes there is always the possibility of a negative biopsy, medical science is a fickle thing and with such a vast area of intestines to investigate they could have missed the actual sections that show signs of damage, but you'll hear a lot that many people here have so many negative tests. For years in fact when their symptoms progressively get worse.

If any other disorder has been ruled out, and they've done the proper tests. You might want to think about the specific blood tests for Celiac, or another biopsy, but really all that would do is rack your medical higher. So if you can good, but there is an even more common chance that the blood tests to be negative. Your best course of action would be to try the diet for a few months and see how that makes you feel, there's nothing to loose, only to gain! For me I started feeling better within two weeks, and I had both a negative blood test and biopsy.

Celiac is still a new disease to doctors, a big mystery. Now irritable bowel syndrome is just a catch all that doctors can diagnose people with, since its just an easy diagnosis to cover what they don't yet know. My GI said that it as just an easy way to pass off all of the diseases that mankind has yet to discover.

Things will get better soon, your in the right place! Welcome to the forums! Read around, its the best way to learn and be armed with knowledge on this tricky disease.

mushroom Proficient

Unfortunately, false negatives are extremely common, whilst false positives are almost unheard of. both for blood work and endoscopy. Have you ever had the celiac blood panel of tests run:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

This is the accepted panel of blood work for celiac disease and is normally done before the endoscopy. If it has not been run I would suggest that you have it done, bearing in mind that it could well be negative too and still not mean that you don't have celiac or, at the very least, gluten intolerance. If you cannot get a diagnosis, there is nothing to stop you from putting yourself on the gluten free diet and see if it eases your symptoms. You do not need a doctor's permission to do this and it is not in the least bit harmful to you.

The fact that you have what sounds like autoimmune thyroid problems would seem to suggest that gluten could well be the cause. Whatever the results of any blood tests, give the diet a good trial and you might be surprised at the results. Many of us here do not have any official diagnosis, having been abandoned by the medical profession as having IBS, fibromyalgia, and all the other wastebasket diagnoses. :rolleyes:

ang1e0251 Contributor

You could also ask for a copy of your original test and post the results here. Can't hurt to have a second look.

tarnalberry Community Regular

Yes. Some labs see "some blunting" and say "oh, there's nothing wrong here". Some will dx with less damage. It's subjective, and if you haven't tried the gluten-free diet at this point, I highly recommend giving it a go.

Archived

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

  • 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. - Scott Adams replied to FannyRD's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

    2. - Scott Adams replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

    3. - trents replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

    4. - FannyRD posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,180
    • Most Online (within 30 mins)
      7,748

    Eldret419
    Newest Member
    Eldret419
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • FannyRD
      Thanks for the resource! I will check it out!
    • Scott Adams
      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten exposure alone. Many people find that issues like low iron, low vitamin D, thyroid problems, other autoimmune conditions, or lingering inflammation can contribute to that deep exhaustion, so it’s reasonable to push your doctor for more thorough blood work beyond just vitamin B. As for eggs, it’s also not unusual for people with celiac disease to develop additional food intolerances over time; tolerating eggs as an ingredient but not on their own can point to sensitivity to the proteins when they’re concentrated. Some people do better avoiding eggs for a while, then carefully testing them again later. Most importantly, trust your body—if something consistently makes you feel awful, it’s okay to avoid it even if it’s technically “allowed.” Many of us have had to advocate hard for ourselves medically, and connecting with other people with celiac disease, even online, can make a huge difference in feeling supported and less isolated.
    • trents
      Welcome to the celiac.com community, @Cecile! It is common for those with celiac disease to develop sensitivity/intolerance to non-gluten containing foods. There is a high incidence of this with particularly with regard to dairy products and oats but soy, eggs and corn are also fairy common offenders. Like you eggs give me problems depending on how they are cooked. I don't do well with them when fried or scrambled but they don't give me an issue when included in baked and cooked food dishes or when poached. I have done some research on this strange phenomenon and it seems that when eggs are cooked with water, there is a hydrolysis process that occurs which alters the egg protein such that it does not trigger the sensitivity/intolerance reaction. Same thing happens when eggs are included in baked goods or other cooked dishes since those recipes provide moisture.  So, let me encourage you to try poaching your eggs when you have them for breakfast. You can buy inexpensive egg poacher devices that make this easy in the microwave. For instance:  https://www.amazon.com/Poacher-Microwave-Nonstick-Specialty-Cookware/dp/B0D72VLFJR/ Crack the eggs into the cups of the poacher and then "spritz" some water on top of them after getting your fingers wet under the faucet. About 1/4 teaspoon on each side seems to work. Sprinkle some salt and pepper on top and then snap the poacher shut. I find that with a 1000 watt microwave, cooking for about 2 minutes or slightly more is about right. I give them about 130 seconds. Fatigue and joint pain are well-established health problems related to celiac disease.  Are you diligent to eat gluten-free? Have you been checked recently for vitamin and mineral deficiencies? Especially iron stores, B12 and D3. Have you had your thyroid enzyme levels checked? Are you taking any vitamin and mineral supplements? If not, you probably should be. Celiac disease is also a nutrient deficiency disease because it reduces the efficiency of nutrient absorption by the small bowel. We routinely recommend celiacs to supplement with a high potency B-complex vitamin, D3, Magnesium glycinate (the "glycinate" is important) and Zinc. Make sure all supplements are gluten-free. Finally, don't rule out other medical problems that may or may be associated with your celiac disease. We celiacs often focus on our celaic disease and assume it is the reason for all other ailments and it may not be. What about chronic fatigue syndrome for instance?
    • FannyRD
      I work as a renal RD and have a Celiac pt which has been rare for me (I might have had 3-4 Celiac pts in 15 years). I wondered if anyone can confirm that these medications are gluten free and safe for Celiac.  Ferric citrate (Auryxia)  Sucroferric oxyhydroxide (Velphoro)  lanthanum carbonate (Fosrenol) sevelamer carbonate (Renvela)   Thank you!
×
×
  • 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.