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 + And Egd Negative


dsepa730

Recommended Posts

dsepa730 Newbie

HI my name is Dawn, I'm new to this forum, but have a few concerns and I was hoping that someone could help me out? I blood work for celiac disease in beginning of march. My Transglutaminase was 73.8 and they said it should be less than 15. My GI doctor told me I need to get a Upper End, it came back negative, he then made me go get a small bowel barium series x-ray, that to is negative. I have all the symptoms I have constipation,extremely low iron my ferritin is a 2, I get dry skin, migranes everyday. Now they want me to have a colonoscopy. Has anyone had this happen. Can the blood work be wrong the biopsy right or other way around. I'm so upset I keep going through all these tests, and no answer. I just want to feel better.


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



Celiac.com Sponsor (A8-M):



Wolicki Enthusiast

With a postive ttg, you most likely are Celiac. False positives are very rare. Did you have a biopsy of the small intestine? If not, then your endo was not correct. Plus, even if you did, the small intesine is over 30 feet. You should have had a small intesine biopsy with at least 6 samples. Xrays will do no good in diagnosing Celiac. Why does he now want you to have a colonoscopy? IMHO, he should have done that at the same time as the endo, to save your body the wear and tear of anesthesia.

How old are you? If you are approaching 50 or if you have a family history of colon cancer, then a colonoscopy is definitely in order. I don't think I have ever heard of a case with positive blood tests when it was not in fact Celiac. if I were in your shoes, I would start the diet post haste. If he wants to do the colonoscopy just because, I would say no thanks. Based on your symptoms and the positive blood test, I think you can safely assume you are Celiac. Unfortunately, some docs will not diagnose unless you have positive tests on every single lab and endo.

WheatChef Apprentice

That high of a tTG reading means that your body is manufacturing cells to destroy a basic enzyme in your small intestine. Confusion here is somewhat related to Celiac Disease being an actual physical manifestation of noticeable trauma as a result of your body attack itself. Your blood work basically shows that the process has begun whether or not the damage has built up or your GI actually noticed it. The disease itself has already started whether or not the symptom (damaged vili) has progressed to a noticeable amount.

The colonoscopy will not tell you anything about celiacs but it can tell you if you are starting to experience secondary damage related to either celiacs or some other problem upstream. Your doctor may be pushing for the colonoscopy to rule out any other sort of malady related to your physical symptoms but in all honesty with that high of tTG antibodies he should have put you on a gluten-free diet first.

Was IgA tTG the only celiac blood test he did? If so you should probably look for another doctor anyways.

dsepa730 Newbie

Hi thanks for replying, I'm only 24 . He said that he believes it just a false positive and that I shouldn't worry. I know I'm young but I'm miserable. So I guess I will just start the diet. I'm also thinking about getting a second opinion. Thanks again.

With a postive ttg, you most likely are Celiac. False positives are very rare. Did you have a biopsy of the small intestine? If not, then your endo was not correct. Plus, even if you did, the small intesine is over 30 feet. You should have had a small intesine biopsy with at least 6 samples. Xrays will do no good in diagnosing Celiac. Why does he now want you to have a colonoscopy? IMHO, he should have done that at the same time as the endo, to save your body the wear and tear of anesthesia.

How old are you? If you are approaching 50 or if you have a family history of colon cancer, then a colonoscopy is definitely in order. I don't think I have ever heard of a case with positive blood tests when it was not in fact Celiac. if I were in your shoes, I would start the diet post haste. If he wants to do the colonoscopy just because, I would say no thanks. Based on your symptoms and the positive blood test, I think you can safely assume you are Celiac. Unfortunately, some docs will not diagnose unless you have positive tests on every single lab and endo.

dsepa730 Newbie

Hi no he did the whole celiac panel that was the only one that was abnormal.

That high of a tTG reading means that your body is manufacturing cells to destroy a basic enzyme in your small intestine. Confusion here is somewhat related to Celiac Disease being an actual physical manifestation of noticeable trauma as a result of your body attack itself. Your blood work basically shows that the process has begun whether or not the damage has built up or your GI actually noticed it. The disease itself has already started whether or not the symptom (damaged vili) has progressed to a noticeable amount.

The colonoscopy will not tell you anything about celiacs but it can tell you if you are starting to experience secondary damage related to either celiacs or some other problem upstream. Your doctor may be pushing for the colonoscopy to rule out any other sort of malady related to your physical symptoms but in all honesty with that high of tTG antibodies he should have put you on a gluten-free diet first.

Was IgA tTG the only celiac blood test he did? If so you should probably look for another doctor anyways.

ravenwoodglass Mentor

Hi thanks for replying, I'm only 24 . He said that he believes it just a false positive and that I shouldn't worry. I know I'm young but I'm miserable. So I guess I will just start the diet. I'm also thinking about getting a second opinion. Thanks again.

With symptoms it is highly unlikely IMHO that it was a false positive. Those are really almost unheard of. False negatives in blood and biopsy however are common. Do the diet. Chances are really good you will feel a lot better soon if you do.

Archived

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


  • 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
      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.