Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Tests "inconclusive." Help Please..

Atrapos

Recommended Posts

Atrapos Newbie
Atrapos
Posted

I'm sure y'all see a ton of these posts, but I wanted to get some insight from Celiac's veterans :)

About two months ago, I had my gallbladder removed because it was infested with gallstones the size of marbles (I'm only twenty years old, so this is weird to begin with). The surgery went fine and was uneventful. However, since the surgery, my abdominal and digestive issues have been getting increasingly bad.

I went to see a gastroenterologist, who immediately jumped on Crohn's disease because of the young age of my gallbladder removal and the location of some particularly sharp abdominal pain (right above the Ileum of the small bowel, apparently). However, after a colonoscopy, the doctor is fairy certain that Crohn's is not the culprit, though I'm waiting for the biopsy still as there was some inflammation and spotting in the Ileum.

Anyway... After being told he was fairly certain it wasn't Crohn's, my mind went to Celiac's disease. I have a family member with it, so there's an increased chance I have it too. I went to my regular doctor, because the gastroenterologist didn't have an opening until after I had to be back in Texas for school (I was in CA where my family and medical insurance is for these tests). She ordered blood tests, of course, but told me they came back negative.

After looking through my blood tests, I can't find where she did the antibody tests at all. Perhaps I'm just missing a sheet. However, the tests did reveal something interesting. I'm anemic and my liver is inflamed.

So basically, after all this rambling, my symptoms are these:

- Abdominal pain and bloating, nausea sometimes

- Alternating constipation and diarrhea, usually fatty and light in color

- Anemia

- Liver inflammation

- Hair seems to be coming out at an increased rate when I brush it

- Ileum pain and inflammation (possibly Crohn's still, but not likely said Gastro.)

- Lactose intolerance, though this may be a lifetime thing

- Weight loss, about 10 lbs in a month, and I only weigh 130 so that's significant

- Extremely tired, often sleeping 10 hours a night. This will be a pain when school starts again.

Even though my antibody tests are negative (supposedly, I can't find them anywhere), my symptoms seem to point to Celiac's very strongly. Have any of you been diagnosed after initial negative antibody tests? Should I continue to eat wheat until my next blood test (Likely about 4 months, I have a busy semester coming up and my insurance wont cover non emergencies in Texas)? Or would you recommend going off gluten and, if it helps, simply assuming celiacs is the culprit and staying on the diet?

Thank you all for your help... I'm desperate for some relief.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

False negatives on blood work are not uncommon. You have the symptoms, you have a diagnosed family member and you had a triggering event, the gallbladder surgery (although the gallbladders issues could possibly be related to undiagnosed celiac if you have had GI issues for a while). The choice to continue on gluten for another 4 months is up to you. Can you stict to the diet without a formal diagnosis? If you can then go ahead and give the diet a try. Just be aware that if you later decide you want a formal diagnosis you will need to go back on gluten for about 3 months to get one. If you need to be on the diet you will likely be made very ill by the challenge. How easy is it going to be for you to get safe food at school? If you are formally diagnosed some schools will let you opt out of the meal plan and some will make sure you have someplace to cook. If you are in an apartment that wouldn't be an issue but if you are living in a dorm and relying on the school to feed you it might be.

Atrapos Newbie
Atrapos
Posted
  • Author

Ravenwoodglass-

Thank you so much for the response! I didn't realize gallstones could potentially be caused by undiagnosed Celiacs, though it seems to affect liver functions so I'm not surprised. I've had GI issued most of my life, which I just realized recently (What do you mean diarrhea several times a week isn't normal? I'm not supposed to hurt after eating?!).

I think I'd be happy without a formal diagnosis, I really just want to feel better... Gluten free food wont be a problem, as I love to cook and bake and make nearly every meal at home for myself, my boyfriend, and my roommates. I've talked to them already and they said they'd be happy to eat gluten free food as long as I still cook for them! Hah!

It's nice to know that blood work is not always reliable, I was afraid the doctors were about to give me the dreaded "IBS" diagnosis.

Atrapos Newbie
Atrapos
Posted
  • Author

Oh, and one more thing. I'm -constantly- hungry. Even when I'm doubled over in stomach pain, I'm thinking about what I can eat next. Is this normal for pre-treatment celiacs? Will the hunger abate once I'm on a gluten-free diet if I have the disease?

Edit: I'm also really cold frequently too... I'm currently on my laptop in the back yard (about 95 degrees fahrenheit) because the 75 degree air conditioned house feels freezing to me. Could that be because of not absorbing enough nutrients? Has anyone else experienced that?

ravenwoodglass Mentor
ravenwoodglass
Posted

Oh, and one more thing. I'm -constantly- hungry. Even when I'm doubled over in stomach pain, I'm thinking about what I can eat next. Is this normal for pre-treatment celiacs? Will the hunger abate once I'm on a gluten-free diet if I have the disease?

Edit: I'm also really cold frequently too... I'm currently on my laptop in the back yard (about 95 degrees fahrenheit) because the 75 degree air conditioned house feels freezing to me. Could that be because of not absorbing enough nutrients? Has anyone else experienced that?

For myself being constantly cold was part of the celiac prediagnosis picture along with very low blood pressure. The being constantly hungrey may be because your body isn't getting the nutrients it needs. Some of us have that increase a bit when we first go gluten free as the body is basically going 'yea food I can use, give me more' but it levels out after a while.

scuzy Rookie
scuzy
Posted

I'm kind of in the same situation as you are. My tests came back negative but the symptoms all point to celiac. I finally decided to start the gluten-free diet and have stayed on for that fact that I no longer have a lot of my symptoms. I would recommend that you do the diet for as long as you can, and if it works then I would assume celiac. From what I have been reading on here is that a lot of the tests are inaccurate and a lot of negatives are wrong. Good luck with everything :)

Archived

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

Go to topic listing

  • 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. Jess270
      - Jess270 replied to AnnaNZ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      29

      Bitters for digestion?

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions...
    2. cristiana
      - cristiana commented on Jefferson Adams's article in Origins of Celiac Disease
      7

      Why Bananas No Longer Cure Celiac Disease

      I missed this article when it was first put up. It is interesting to read, as my old neighbour who sadly passed away a few years ago was a trainee midwife during WWII. Bananas disappeared from the shops in Britain during the war, but she told me that those that did get to the UK were kept back for infants with coeliac disease. I didn't realise that...
    3. trents
      - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    4. GeoPeanut
      - GeoPeanut replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease, and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with...
    5. trents
      - trents replied to KRipple's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac or Addison's complications? Can someone share their experience?

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,054
    • Most Online (within 30 mins)
      7,748
    Carlie
    Newest Member
    Carlie
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jess270
      Bitters for digestion?

      By Jess270 · Posted

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
      Vaccines

      By trents · Posted

      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Vaccines

      By GeoPeanut · Posted

      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Are they close to a drug that will help celiacs with cross contamination

      By kate g · Posted

      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
×
×
  • Create New...