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

Possible Misdiagnosis?

Lanahgreen

Recommended Posts

Lanahgreen Newbie
Lanahgreen
Posted

I have been diagnosed as positive Celiac by a biopsy... stating "most likely active celiac".  I have not had bloodwork done yet.  Has anyone out there had a positive biopsy and negative blood tests?

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

It happens.  Some have a positive biopsy and negative blood tests, others have positive blood tests and a negative biopsy, others only have one positive blood test and the rest are negative.  It's even possible to have celiac disease without the genes for celiac disease, although that scenario is rare unlike having conflicting blood tests.

 

Most celiac blood tests have a 70-95% sensitivity, meaning that there is a 5-30% chance that a celiac will be missed by any given test. The more blood tests you have done, the more likely it is that at least one blood test will catch the celiac disease.  These are the tests to look for:

  • tTG IgA and tTG IgG (tissue transglutaminase)
  • DGP IgA and DGP IgG (deaminated gliadin peptides)
  • EMA IgA (endomysial)
  • total serum IgA - a control test
  • AGA IgA and AGA IgG (anti-gliadin) - older tests

Make sure you are eating gluten in the 2-3 months before the test.

 

If you do end up with negative blood work, you should probably do the gluten-free diet unless the doctors have found some other reason for the intestinal damage.  You could always redo the biopsy after a year gluten-free to look for improvements. If your intestines have healed while gluten-free, then you have your answer.

 

There are others around here who know more about the biopsy and the conditions that could possibly caused a false negative in the minority of patients. Hopefully they can offer more wisdom than I.

 

Welcome to the board.   :)

beth01 Enthusiast
beth01
Posted

Like Nicole stated if your tests are inconclusive but your biopsy revealed Celiac, do the gluten free diet.  Nothing good comes from being a celiac and eating gluten.  Even if you aren't having digestive symptoms it is wreaking havoc on not only your intestines but the rest of your body as well.  Untreated celiac isn't fun, just ask a bunch of us that have gone our whole lives with health problems, it's better to head off the problem before it can start.

Lanahgreen Newbie
Lanahgreen
Posted
  • Author

I guess that's where I'm so confused.. I have zero diarrhea, no weight loss (I'm actually overweight for my height), no skin outbreaks, no migraines.  I went to the doc because EVERYTHING that touches my stomach makes it roll and bloat.  Water will do it.  So it's not just gluten products.  I'm hoping my blood work comes back negative as I live in a rural area and there are no Whole Foods markets, Publix, nothing.  I take care of my parents every night who eat old-school southern cooking ONLY.  This will be a huge adjustment.  I'm just very overwhelmed right now.

nvsmom Community Regular
nvsmom
Posted

I never had diarrhea either, only C. And as an adult, I am usually normal weight to overweight. I was tall for a child, and I have no real nutritional deficiencies... I did not really fit the mold either.

 

Stomach aches at odd times came for me too. Sometimes there would be nothing, and at other times I cold barely stand up straight.. I used to carry a sweater with me to hold over my stomach when I went out because I never knew when I would bloat up and look like I was in my second trimester of pregnancy.

 

I mention my symptoms because you do have symptoms of celiac disease. They are not all classic celiac disease symptoms but it is still there. :(  

 

I found a list of other disorders that can cause villious atrophy besides celiac disease. Do any apply to you? Open Original Shared Link

 

It's tough to change your cooking ways, but it can be done.  Those first few months are hard though. :(  (hugs) Hang in there.

beth01 Enthusiast
beth01
Posted

You don't necessarily need to shop at whole foods.  A lot of foods you can get at any old supermarket and some people order bulk flours and such which you can get online.  It's an adjustment but a worthy one when you start to feel better.  You might also have other "symptoms" that you didn't even realize were related.  Just look at it as a whole new you.  Make sure you read the newbie thread and learn about cross contamination under the "coping" section here on the forums.

SMRI Collaborator
SMRI
Posted

I guess that's where I'm so confused.. I have zero diarrhea, no weight loss (I'm actually overweight for my height), no skin outbreaks, no migraines.  I went to the doc because EVERYTHING that touches my stomach makes it roll and bloat.  Water will do it.  So it's not just gluten products.  I'm hoping my blood work comes back negative as I live in a rural area and there are no Whole Foods markets, Publix, nothing.  I take care of my parents every night who eat old-school southern cooking ONLY.  This will be a huge adjustment.  I'm just very overwhelmed right now.

 

It's overwhelming for the thought of going gluten free.  I was recently diagnosed as well and I pictured this life changing illness that would take weeks and weeks to prepare to do...well, while a lot of foods have gluten in them, a lot do not and with some simple modifications, you can be fine without living near a Whole Foods.  I think the closest Whole Foods to me is about 4 hours away.  I'm not sure what "old-school southern cooking" is but in my mind that is a lot of breaded and fried foods.  You cook the same, just use rice flour or similar instead of wheat and use "clean" oil to fry foods.  Meat, vegetables, corn chips, etc. are all fine.  I'm actually surprise how many "regular" foods are gluten-free.  I certainly did not want to be Celiac, would prefer not to have to think about it, but it's not as overwhelming as people are making it out to seem.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA 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
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • 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.
×
×
  • 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.