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

Retest For Celiac?

Smeech

Recommended Posts

Smeech Rookie
Smeech
Posted

Retest for Celiac?

Okay, I hope I can keep this short.

Nearly 2 years ago, I had a blood test done because I was having abdominal pain and have always been skinny and unable to gain weight. The blood test came back from the lab and the doctor wrote: "Blood markers suggest celiac disease." I had to refer to my GI Dr. for an endoscopy.

I had an endoscopy done. I got a letter back from the GI. It said that testing for celiac came back negative, but I do, however, have a 'irritation to grains'.

I got caught up in life and didn't followup quick enough. Then the GI went on leave due to an illness. He recently returned.

Now, I don't know if this is related or not,

1. but during the first week of February, I had what I thought was the stomach flu or food poisoning. It was basically vomiting and diarrhea, but within a 24-hour period.

2. About a week later I had wattery diarrhea for about 5 hours.

3. A week after that, I had a recurrance of what I had two weeks prior: stomach flu/food poisoning. This time it was even shorter..

4. About a week later, I had wattery diarrhea again, all within one day.

5. On the past Friday, I woke in the morning because I was heading out to Cancun. After eating Cheerios and milk I shortly needed to go. Wattery diarrhea again, but for only 3 hours...perhaps because I took Immodium.

Yesterday was okay, a little wattery at first, but alas I had solid stools two times.

Today, shortly after eating pizza, tortilla chips and a corona for late breakfast (it is Cancun, remember), I get wattery diarrhea. I still have it at this time (about 6 hours later).

Now, I saw my Doctor a week before heading off to Cancun because I was concerned about what had just happened the past month. He tested my for Giardia and H. Pylori (by request) and both came back negative. He did mention, at least twice, how he was surprised that celiac came back negative. He gave me a reference to the GI, which I will visit when I return from Mexico.

Could it be that my tolerance is getting worse? Has anyone else experience (I guess this would be) episodic diarrhea when not on a gluten free diet? Now, should I have a blood test (for Celiac) again? Should I go see the GI for another endoscopy? Is it possible that the endoscopy had a false negative or could not find traces of celiac disease?

Thanks!

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

Damage due to celiac can be spotty. If they don't take the biopsy from just the right spot, they can easily miss the damage. The biopsy can prove celiac, but cannot rule it out.

Your symptoms sound like celiac. With a positive blood test, you could try the diet and use the blood test and dietary response for your diagnosis. I suspect you will feel much better gluten-free.

Stick to the fruit and margaritas down there and you'll feel much better!

Smeech Rookie
Smeech
Posted
  • Author
Damage due to celiac can be spotty. If they don't take the biopsy from just the right spot, they can easily miss the damage. The biopsy can prove celiac, but cannot rule it out.

Your symptoms sound like celiac. With a positive blood test, you could try the diet and use the blood test and dietary response for your diagnosis. I suspect you will feel much better gluten-free.

Stick to the fruit and margaritas down there and you'll feel much better!

Carla, thank you for the reinforcement!

When someone has celiac, can reaction be hit-or-miss? Example: eat all kinds of food (with gluten) 5 days in a row, feel okay, good bowel movements, but on the 6th day develop symptoms (eg. diarrhea)?

I stuck to a light, gluten-free dinner tonight..now I'm resting up in my room because I'd rather feel better tomorrow than stay up late and party...hehe

CarlaB Enthusiast
CarlaB
Posted

That's probably just because your system is so overwhelmed with dealing with the gluten. I became much more sensitive when I went gluten-free. It was like before my body just had to deal with it when it could. Now, my body wants it eliminated ASAP! That is a very common thing.

Think of smoking. If someone smokes a pack a day, a single cigarette won't make them sick even though smoking is affecting their health. Once they quit for a while, even a single cigarette will make them gag.

happygirl Collaborator
happygirl
Posted

Smeech,

Reactions can vary from person to person, and even in one person (sometimes they react, other times they don't).

Celiac is referred to as a "medical chameleon" because of its different presentations. Some people are debilitated by their symptoms, others have absolutely no symptoms (they are referred to as "silent Celiac" or asymptomatic Celiac), and everyone else kind of falls in the middle, with a varity of symptoms. Its hard because there are very few Celiacs who have the "exact" same symptoms, and what used to be thought of as "classic" Celiac (diarrhea, failure to thrive, malnutrition) only accounts for a small portion of all Celiacs.

Do you have your records? If not, is there a way to get ahold of them (specifically, the Celiac blood test?)

Laura

Smeech Rookie
Smeech
Posted
  • Author
Think of smoking. If someone smokes a pack a day, a single cigarette won't make them sick even though smoking is affecting their health. Once they quit for a while, even a single cigarette will make them gag.

This makes sense, thank you.

Laura, I'm certain I can attain the results. I will call my doctor asap next week.

Thanks again!

Jon

happygirl Collaborator
happygirl
Posted

Get a hard copy (don't have them read them over the phone, they are infamous for misreading), get the results, post the tests, the results, and the reference ranges, and we'll have a go at it!

Laura

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

Celiac.com Sponsor (A8-M):


mamabear Explorer
mamabear
Posted

When someone has celiac, can reaction be hit-or-miss? Example: eat all kinds of food (with gluten) 5 days in a row, feel okay, good bowel movements, but on the 6th day develop symptoms (eg. diarrhea)?

Without a doubt! Makes it hard to believe anything is wrong. I kept figuring I was getting a lot of bad chicken...or a GI bug....or anything "explainable". I do believe after the villi have blunted, it is less likely to have the normal runs in between(pun intended!! However......hydration status also plays in. If you are dehydrated and the colon is doing its job absorbing water, you can still have normal looking,but abnormal stools. Make sense??

Smeech Rookie
Smeech
Posted
  • Author
Without a doubt! Makes it hard to believe anything is wrong. I kept figuring I was getting a lot of bad chicken...or a GI bug....or anything "explainable". I do believe after the villi have blunted, it is less likely to have the normal runs in between(pun intended!! However......hydration status also plays in. If you are dehydrated and the colon is doing its job absorbing water, you can still have normal looking,but abnormal stools. Make sense??

Yes, definitely makes sense, thanks for the clarification.

I will do what Laura suggests (get a hard copy of the results and post) before I try re-testing... my insurance was much better 2 years ago than what I have now, and am a bit worried that they wouldn't cover as much of the cost on a procedure like an endoscopy/biopsy.

Thank you everyone! :)

Jon

Smeech Rookie
Smeech
Posted
  • Author

One important thing I forgot to mention:

On the original endoscopy/biopsy, it was determined that I have a hiatus hernia. I experienced a bit of heartburn at the time. I've been taking Prilosec OTC once a day (before dinner) ever since. Is there any link between hiatus hernias and celiac disease?

mamabear Explorer
mamabear
Posted
One important thing I forgot to mention:

On the original endoscopy/biopsy, it was determined that I have a hiatus hernia. I experienced a bit of heartburn at the time. I've been taking Prilosec OTC once a day (before dinner) ever since. Is there any link between hiatus hernias and celiac disease?

Not to my knowledge. A hiatal hernia is a rupture of the opening between the chest and abdominal cavities. It is "mechanical" by nature. Celiac disease has an association with gastroesophageal reflux disease, but there are varying studies that emphasize its connection. You can have reflux with or without a hiatal hernia.

Guhlia Rising Star
Guhlia
Posted

Throughout my entire life I had episodic diarrhea. I thought that I just caught stomach bugs a lot. It would never last for more than a day, generally it would only last 3-5 hours, but it would happen a few times a year. My main symptoms of Celiac, up until it got bad, were not GI in nature. My main symptoms included depression and other emotional issues, very minor neuropathy, RLS, excessive back neck and joint pain, migraines, forgetfulness (brain fog), poor balance, horrible night vision, muscle cramping and spasms, extreme irritability, pale pasty looking complexion, and short stature. I'm sure there are more symptoms that I haven't even connected to Celiac. I didn't get the GI symptoms until I had my first child. After I went gluten free ALL of these issues resolved themselves. I still get migraines here and there, but they're a lot less frequent now. I also still suffer with an RLS-like condition, but it's not life changing for me anymore. I feel pretty normal most of the time now and life is good.

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.