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

Weak Positive Diagnosis For Celiac


janu

Recommended Posts

janu Rookie

I am a retired schoolteacher, age 57. I've had 28 years of symptoms with various diagnosis, IBS, Ulcerative colitis, arthritis, trigeminal neuralgia, anemia, depression, high blood pressure, diahrea, etc. I have always been slightly overweight but have suffered many of the other symptoms associated with Celiac. My doctors always treated individual symptoms, usually with some form of medication to mask the symptom. After doing a medical d-tox through my chiropractor I felt hugely better! Then my daughter was diagnosed with Celiac. I traveled to see her doctor and had the antibody tests done. The results showed a "weak positive" probably because I had been gluten free for 2 months because it made me feel better. My dilema - should I go back on a regular diet for a period of time and have the tests redone or does it matter? I also have two other children that are having unexplained health problems. Would it help them if I had the confirmed biopsy or is that insignificant? :unsure::unsure: : :unsure:


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



Celiac.com Sponsor (A8-M):



MySuicidalTurtle Enthusiast

I was diagnosed with Celiacs and then my brother was but my Mom who had the same and even worse symptoms couldn't get a positive blood test. She didn't want a biopsy so wenton the diet and has benifited greatly from it. You don't NEED an official diagnosis unless for some insurance or something but other than that if you want to stick with the diet because you feel better then do it!

Your other children shuld get tested. Even if you aren't official their sister is.

KaitiUSA Enthusiast

You do not need an official diagnosis unless there is a reason you think you need one. I would personally just listen to your body...you know it runs in the family and you had a weak positive when trying to be gluten free for 2 months then that should also speak for something.

As Kristina said the rest of your children should be checked....other blood relatives should probably get checked as well considering it is genetic.

Rikki Tikki Explorer

I agree Janu, I don't think you need to go back on gluten to get a positive result. If you feel better, I would just stay away from gluten. If you already have a weak positive that should be good enough. I think the other kids should be tested. With me, the doctor didn't even tell me he suspected it, he received the blood tests did the endscopy and then told me. Of course, that was years after a doctor had told me my blood showed a disease, but he didn't think I had it because it was so rare! Guess what that was, celiac. Who knew....... ;)

ianm Apprentice

I don't have a formal diagnosis but I feel so much better since going gluten-free that I really don't need one. Try not eating gluten for a while and if you feel better then that is all you really need to know. The only "cure" for this disease is to stop eating gluten so it won't hurt to try.

Guest chickadee

:rolleyes: ( Open Original Shared Link ) If you cut and paste this link it will take you to the Mayo Clinic web site page that deals with diagnosis of Celiac disease.

For anyone who thinks they may have Celiac, going gluten free can alter your results.

Not everyone will have positive results no matter what they do.

I never had a positive result because my gluten intake had been limited by the time I went to see the specialist. I was told by the specialist to go gluten free if it made the symptoms go away. Part of the diagnosis involves symptoms.

When we took our son to the sick childrens hospital they told us that it was possiblel for our son to have the blood test and biopsy done, and still be negative.The recomondation when this happens is to listen to your body. If you eat something that makes you sick then dont eat it.

Take Care, Brenda

Lesliean Apprentice

Being weakly positive is like being somewhat pregnant. You either are or aren't. And the antibodies start dropping immediately on a GFD.

The next step would be the "gold standard" biopsy and I believe it is starting to be questioned as a neccesary test for diagnosis. It is sometimes like looking for a needle in a haystack and those who are positive on the blood work are often already gluten-free and reluctant to eat gluten again for any reason. After 2 months your intestines might have healed enough to biopsy negative. My doctor said that in order for me to have the biopsy I would need to go back to eating gluten for 2-3 months. No way for me!

I am so glad you are getting good results from a GFD and that family members are pursuing this too. I hope the other kids will get tested as your serology was positive. Also, if your family has intestinal damage they might have temporary trouble digesting dairy too as it is broken down by the tips of the villi in the small intestines.

Leslie


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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,554
    • Most Online (within 30 mins)
      7,748

    Becky 0163
    Newest Member
    Becky 0163
    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
      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
      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
      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
      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
      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.