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

Negative Blood Test 10 Years Ago...could I Still Have Celiacs?

greenchick22

Recommended Posts

greenchick22 Rookie
greenchick22
Posted

Hello!  I'm in my thirties and had a Celiac blood panel about 10 years ago due to a lot of gastrointestinal issues at the time.  Blood test came up negative, endoscopy showed inflammation but that's all they told me and then diagnosed me with IBS.  I didn't know to ask more, I was so young, but I wish I had pushed for more info.!  Following that I took Levsin for my stomach, which helped, and on my own went off of dairy and basically diagnosed myself lactose intolerant.  Also started probiotics.  Stomach was much better, but it still flared up sometimes.  Fast forward a few years and I started experiencing fatigue that got worse and worse.  I feel like I could sleep for 15 hours or more if I didn't have to work.  I feel lazy, but I'm just too tired to do anything!  I used to be motivated to exercise but not anymore.

 

Other symptoms that have appeared or worsened over the past few years:  loose stools (sometimes), gassy, burping, eczema, itchy skin, anxiety, depression, irritable/moody suddenly for no reason, terrible pms, "fuzzy" thinking, memory problems, can't concentrate, easy bruising, hip and leg soreness,  weakness in muscles of hands and arms and sometimes face, congestion/frequent sinusitis, dry eyes and mouth, costochondritis, asthma,  more cavities (never used to have them)

 

Last year my liver was enlarged and I had low potassium and had to take a supplement - it improved and nothing was ever found out about why the liver was inflamed.  

 

I had a blood workup a few months ago and turned up deficient in Vitamins B and D.  Iron wasn't deficient, but also wasn't very high.  The range is 10-291 and mine was 32.   Red blood cell count was a little high, and alkaline phosphatase was a little low - both of which they said not to worrry about.  They put me on high doses of vitamins to handle the B and D and I thought surely my depression and fatigue would improve with those, but no such luck.  

 

I feel awful most of the time and miss the energy and zest for life I used to have!  I just had another Celiac panel, in the hopes that maybe something will turn up this time.  Is it possible to test positive years later, after testing negative? Does anyone have suggestions on what to do if the test comes up negative again?  I'm almost certain I have some sort of gluten problem...not thrilled about a diet change but if I feel better, it will be totally worth it.

 

Thanks!

 

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

Celiac.com Sponsor (A8-M):


emaegf Newbie
emaegf
Posted

Yes, it is possible to test positive even if you had a negative test years earlier.  If you do have negative test results again do a gluten free diet trial and see if it helps.  Testing for Celiac is three fold 1 - Blood panel, 2 - Biopsy, 3 - Patient's response to a gltuen free diet. If 3 helps even if 1 & 2 are negative you may be nonCeliac gluten intoleratant. The treatment is the same however - a life long gluten free diet.

1desperateladysaved Proficient
1desperateladysaved
Posted

I hope your test will be definitive for you.  The diet is difficult, but a piece of cake compared to living with mental fog and fatigue.  I hope you will be getting better soon.

 

D

greenchick22 Rookie
greenchick22
Posted
  • Author

Thank you both!  As crazy as it sounds, I'm almost hoping that I can get a positive diagnosis.  At least then I'll have some knowledge about changes to make and hope of feeling better.

Catholic Mommie Newbie
Catholic Mommie
Posted

Hi I am totally new at this diagnosis thing but this may help you. I would get retested if i were you because of this. I was tested for the celiac panel last september by my GP and the result was negative. Now fast forward to this year to March and i retested. The test itself had changed but it was the same celiac panel that was ordered and this time the result was positive. They tested this time for endoantimysial antibodies i may not have spelled that right. So now i am waiting to do a biopsy. Note though that if you want to do a biopsy i don't think you should stop eating gluten because then you will heal and they won't find the intestine damage if you are celiac. So that is just six months of time and the test changed. Retest for sure and i will you well!!! :)

Catholic Mommie Newbie
Catholic Mommie
Posted

I forgot to mention that i have the same deficiencies B12 and D like you and iron as well for me. I'm in my late 30's too. So those alone I would say Test! 

 

:)

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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.