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

Blood Test Negative - Should I Go Off The Gluten-Free Diet?

Cat Eyes

Recommended Posts

Cat Eyes Rookie
Cat Eyes
Posted

I recently went to the doctor and had bloodwork done. This is the second time I have been tested for Celiac in the past 5 years, and both times I came back negative. On a scale of 1-17, my TGA level was 5, which my doctor assures me is very low. However, she said that if I feel I am benefitting from the gluten free diet then I should stick to it.

The problem is that I'm having a hard time gaining weight on the diet. About 6 months ago I went through a really bad breakup and dropped 20 lbs due to lack of appetite. That weight loss caused my hair to start falling out, which I am told is quite common when your body isn't getting the calories it needs. My doctor has told me that in order to get well again, I need to start eating well and gaining the weight that I lost back. Unfortunately, I really feel limited by what I can eat on a gluten free diet. In the past month I've gained 6 lbs. back but that's only because I've been force feeding myself fattening foods like peanut butter and purposefully eating more calories than I need. I worry that once I start eating a normal amount again, the weight will once again drop off.

When I was on a non gluten free diet I had no problems gaining weight and had a very full, thick head of hair. However, I had problems like stomachaches, headaches, fatigue, dizzyness, etc. and a HUGE appetite. My mom has been diagnosed Celiac, and I have noticed that certain drinks/foods, particularly beer, cause my body to go haywire. To me, this evidence points to Celiac, or at the very least, a gluten intolerance.

Is it common to get negative blood tests but still have Celiac? Should I stick to a gluten free diet or eat what I want so I can gain weight again? I feel like I'm starving on this gluten free diet!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Yes you can be negative on blood tests and still be celiac. Plus if you are already gluten free that will in itself cause a negative because you aren't forming the antibodies that are being looked for.

I would stick with the diet since you have had resolution of symptoms. A severe illness or stress, like your breakup, can cause hairloss and it usually takes about 3 months to start regrowing noticeably. Make sure you are getting enough nutrient wise, I take Country Life 'Hair and Nails' along with some extra biotin when I have an episode of hair loss and it seems to help.

The pnut butter and other calorie dense foods are what you need to gain weight. If you aim for an extra 1000 calories a day that should put the weight back on pretty quick. After a loss of 20 lbs I used Wylde pretzels, a bag is about 1000 calories, and munched on those and dipped them in pnut butter along with my regular meals. when I got to the weight I wanted I just cut back to my normal calorie intake and the weight I wanted stayed on but I stopped gaining.

A nutritionist may be able to help you out with making sure you are getting the nutrients you need and I am sure others will chime in with what they used to regain.

nora-n Rookie
nora-n
Posted

Of course yor blood tests are negative when you are on the gluten free diet.

Your doctor should have pointed that out for you.

Skylark Collaborator
Skylark
Posted

Your doctor is also right that with a celiac mom you should stick to gluten-free if you are benefiting from it.

Cat Eyes Rookie
Cat Eyes
Posted
  • Author

Of course yor blood tests are negative when you are on the gluten free diet.

Your doctor should have pointed that out for you.

I told my doctor the same thing, and she assured me that if I had Celiac, the antibodies would be present in my blood stream in higher numbers, regardless of whether I was on a gluten free diet or not. I politely told her that I didn't think that was the case because I had heard numerous stories of negative bloodwork but positive biopsies. But now I'm not sure who to believe!

nora-n Rookie
nora-n
Posted

They use the blood tests to monitor celiacs on the gluten free diet, so obviously what she said is nonsense. They should go down to 0.

Now the ttg test is special, since it is dependent on actual tissue damage. Damaged cells cause ttg. On the gluten free diet, there is no mroe cell damage.

Also, one needs to eat a lot of gluten to be positive, but some get high numbers despite of small , very small amounts of gluten sneaking in.

I read a newsletter from a celiac group where the group leader one year had high ttg antibodies (yes, celiacs get yearly antibody test to see if they are adhering to the diet) and it turned out it was feeding wild birds that was the gluten source.

Maybe she meant antigliadin IgG, since they can take a couple of years to go down, but they will be zero eventually too.

In patchy celiac , biopsy-proven, the blood tests are negative in about half the cases.

And, one cannot rely on antibody tests for monitoring all celiacs on the gluten-free diet either since some do not have high antibodies.

Cat Eyes Rookie
Cat Eyes
Posted
  • Author

They use the blood tests to monitor celiacs on the gluten free diet, so obviously what she said is nonsense. They should go down to 0.

Now the ttg test is special, since it is dependent on actual tissue damage. Damaged cells cause ttg. On the gluten free diet, there is no mroe cell damage.

Also, one needs to eat a lot of gluten to be positive, but some get high numbers despite of small , very small amounts of gluten sneaking in.

I read a newsletter from a celiac group where the group leader one year had high ttg antibodies (yes, celiacs get yearly antibody test to see if they are adhering to the diet) and it turned out it was feeding wild birds that was the gluten source.

Maybe she meant antigliadin IgG, since they can take a couple of years to go down, but they will be zero eventually too.

In patchy celiac , biopsy-proven, the blood tests are negative in about half the cases.

And, one cannot rely on antibody tests for monitoring all celiacs on the gluten-free diet either since some do not have high antibodies.

Thanks for the info. It's very concering to me that my doctor, who has been a great doctor and has helped me deal extremely well with other health problems, has no idea about how these blood tests work.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for the info. It's very concering to me that my doctor, who has been a great doctor and has helped me deal extremely well with other health problems, has no idea about how these blood tests work.

Most doctors are clueless about celiac. If he is a good doctor in other respects you can try and educate him a bit.

Archived

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

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


  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748
    Lunaluv
    Newest Member
    Lunaluv
    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.