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

I'm Not Convinced By My Test Results.


Brittanyadell

Recommended Posts

Brittanyadell Newbie

Okay, so I am a 17 year old girl who has had one blood test to see if I was celiac or had any deficiencies in my nutrient, vitamin and mineral levels. This was about 4 or 5 months ago now... All the tests came back NEGATIVE.

I have been severely lactose intolerant since I was a baby, and remember growing up with a constant stomach ache or upset stomach after eating virtually anything. From ice cream, to pasta, to cake, I was constantly in the washroom with terrible upset stomachs. When I was 11, I began getting severe ocular migraines (where your vision becomes swirly for about 30 mins, but rarely any pain), my eye doctor and family doctor told me that there's no way to determine the cause of these "migraines" but often times food can be associated with them. Around age 13, I was stricken with the most severe stomach aches I have ever gotten. They started out as just a regular stomach ache, I apologize if this is a little TMI, then the pain would increase and increase until my stomach would make this noise (similar to blowing bubbles through a straw into a little bit of water) and this would happen over and over again. It would send my body into a sort of opposite vomiting spell. My bowel movements were often times watery, fatty (kinda with white mucus looking stuff on it, sometimes with undigested food). One minute okay, the next having increasing pain, then severe diarrhoea. I was prescribed Zantax and was told I had IBS and to avoid acidic foods.

When I was 15, I began exercising and eating considerably less processed foods. I ended up dropping from my unhealthy weight of 153 down to my current weight of 130. My weight loss has happened very naturally, over the period of almost 2 years, with only healthy changes as the cause. This helped my stomach very, very much, but I still had many negative symptoms.

In February 2012, I made the decision to stop consuming dairy. I replaced nearly every dairy product in my diet with a soy alternative, resulting in what I considered a severe hormone imbalance. I missed my for the months of February and March, had severely oily hair and skin, and put on a fairly large amount of water weight. I then opted for a more soy-free version of my dairy-free diet - I know use almond milk, and just don't eat any kind of cheese or yogurt or anything like that.

I began training for a half marathon in the spring, began training with a trainer and she recommended I try cutting out gluten to see if that helped the remainder of my still frequent stomach troubles. I did as she said and began a mainly gluten-free diet in July 2012. I noticed it helped very much. My diet consists mainly of fruits, veggies and protein. Occasionally the odd piece of Udi's bread or a gluten-free, DF cookie.

However, I really just want conformation. I had a blood test taken as I said, that came back negative, but the severity that I get sick when I consume something containing gluten or dairy is unbelievable. Is it possible to have celiac disease and have your blood test come back negative? If I go back to my doctor, he will think I'm crazy, but I just am not convinced that something more serious isn't going on.

I am not currently following a 100% gluten-free diet, and haven't been having the most happy insides lately. I'm sorry this is so long, I just wanted to get my story clear in hopes that someone could help or relate or lend me a little bit of advice. I'll be starting university next fall, or travelling am nervous that without a clear diagnosis that I could be putting myself at risk.

The foods I have determined that I am extremely sensitive to are: Dairy (I'm for sure lactose intolerant), Gluten (suspected intolerance or maybe celiac disease?), Peanuts (severe stomach ache from them), Raw Carrots (severe stomach ache and gas), and I'm very sensitive to sugars (I try very hard to avoid any artificial sweeteners, but even natural sugars cause my insides to act up). *I also have suffered from severe eczema and often times break outs around the times I consume gluten.. I don't know if that could have an effect.

Thank you so much for reading this essay of a post,

Brittany


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



Celiac.com Sponsor (A8-M):



DavinaRN Explorer

My blood work was negative, but I responded so great to not eating it. I could tell after one meal--I didn't feel more sick after eating than before I ate. Luckily my endocrinologist agreed that even if the blood work was negative, but having a positive dietary response that going gluten free would not hurt me. She said it isn't like a diagnosis changes the treatment plan. Celiac, gluten sensitivity/intolerance or wheat allergy are all treated by not eating it.

rosetapper23 Explorer

You may not have been eating enough gluten to have a positive celiac test. No worries--you know what you're reacting to....so simply eliminate ALL gluten for life. You'll be glad you made the decision.

tarnalberry Community Regular

If you went gluten free in July, and got tested September (four months ago), that means you were gluten free prior to testing, so the tests can't give you a reliable answer to whether or not you have celiac. You have to be consuming gluten at the time of (and for a few weeks or months prior to) testing in order to be accurate.

Brittanyadell Newbie

If you went gluten free in July, and got tested September (four months ago), that means you were gluten free prior to testing, so the tests can't give you a reliable answer to whether or not you have celiac. You have to be consuming gluten at the time of (and for a few weeks or months prior to) testing in order to be accurate.

That's definitely a point I hadn't put much consideration into. Thank you!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - MoniqueCham replied to MoniqueCham's topic in Related Issues & Disorders
      3

      Celiac Disease, Lymphocytic colitis and Bowel rupture

    2. - Scott Adams replied to HelenH's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Malt vinegar

    3. - Scott Adams replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      55

      Supplements for those Diagnosed with Celiac Disease

    4. - Scott Adams replied to MoniqueCham's topic in Related Issues & Disorders
      3

      Celiac Disease, Lymphocytic colitis and Bowel rupture

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,550
    • Most Online (within 30 mins)
      7,748

    Franie Wehrung
    Newest Member
    Franie Wehrung
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • MoniqueCham
      Thanks for your reply Scott! A long time ago I realized I didn’t fit neatly into uncomplicated celiac disease. Over the years I’ve been diagnosed and treated for SIBO, pancreatic insufficiency and diagnosed with Stage 2 liver fibrosis. I think all the complications occurred because of the refractory celiac disease. When I hit menopause my gut issues seemed to calm down and because I was stable I made the mistake of not following up with my gastroenterologist. Then other autoimmune problems flared and I tried the methotrexate. It worked like a charm for my skin condition… then my sigmoid colon ruptured. Strange but my autoimmune skin condition remains in remission after 6 months off the medication. We have a very long waiting list to get back into see my GI doctor… I was an emergency referral but am still waiting 6 months after the perforation. I need more surgery to fix a fistula that has formed and to reconnect my colon… I have a colostomy at present. I became a dietitian who specializes in bowel diseases but have never met anyone who’s had so many complications with celiac disease. I have a brother and son who also have been diagnosed. My mother had 4 autoimmune diseases including a vasculitis that eventually resulted in her death and it was my father who had the HLA DQ2 gene. Think I inherited some tendencies from each of them. Thanks again for your response… it feels a little lonely dealing with GI issues when I work so hard to remain gluten free.   
    • HelenH
    • Scott Adams
      Yes, unfortunately malt vinegar can definitely trigger a strong reaction in people with celiac disease. Malt vinegar is typically made from barley, which contains gluten, and unlike distilled white vinegar, it is not considered gluten-free. Even a small amount — especially if you’ve been strictly gluten-free for years — can cause a more intense reaction because your body is no longer accustomed to exposure. Many people report significant symptoms after accidental ingestion, including abdominal pain, diarrhea, fatigue, or flu-like feelings. You’re not alone in that experience. It may help to be especially cautious with salad dressings, chips, sauces, and restaurant foods, where malt vinegar is sometimes used.
    • Scott Adams
      A diagnosis of Refractory Celiac Disease Type 2 is a lot to absorb, especially if you feel like the severity wasn’t clearly communicated earlier. It’s understandable to feel shocked and frustrated. RCD Type 2 does require close specialist care, often with a gastroenterologist who has experience managing complex celiac cases, and sometimes coordination with hematology because of the immune cell changes involved. Focusing on nutrition is absolutely important — many people benefit from working with a registered dietitian who specializes in celiac disease to help address malabsorption, weight loss, and vitamin or mineral deficiencies. You’re doing the right thing by seeking information and support. Make sure you feel comfortable asking your care team direct questions about your biopsy results, treatment plan, and monitoring strategy — you deserve clarity and a coordinated approach.
    • Scott Adams
      I’m so sorry you’ve been through all of that — that’s an incredibly complex history. While methotrexate is widely used at low weekly doses for autoimmune conditions, it can, in rare cases, cause serious gastrointestinal side effects, including ulceration, mucosal injury, or even perforation. That said, a spontaneous sigmoid rupture from methotrexate at 15 mg weekly is extremely uncommon. In people with celiac disease — especially refractory celiac — there can already be underlying intestinal inflammation or altered mucosal integrity, which might theoretically increase vulnerability, but there isn’t strong published evidence clearly linking stable celiac disease to a markedly higher risk of methotrexate-related bowel perforation. Other factors such as concurrent inflammation, vascular compromise, infection, steroid use, or microscopic colitis may also contribute. It would be reasonable to review the case with a gastroenterologist familiar with refractory celiac and possibly a rheumatologist, and to report the event as a potential adverse drug reaction. I’d also be very interested to hear if others in the community have had similar experiences.
×
×
  • 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.