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

Confusing results


MariaC

Recommended Posts

MariaC Newbie

I was diagnosed with anemia 4 months ago (Iron 3, hemoglobin 88) and had a colonoscopy and endoscopy to look for internal bleeding. Nothing was found in the colonoscopy and the endoscopy showed mild duodenitis. The doctor took some samples of my small intestine to check for celiac disease. The tesults came back and the diagnosis was duodenal mucosa and partial villous atrophy which could indicate celiac disease among other possible diagnosis.

A couple of weeks ago I had bloods taken for a celiac serology and so far just the first part of the results have come back and shows elevated IgA and IgM.

IgA - 4.10 (ref. range 0.8-4.0 g/L)

IgM - 2.38 (ref. range 0.5-2.0 g/L)

My gp has recomended I start a gluten free diet as she believes I am celiac based on those results and that would explain my anemia. The second part of the test should arrive next week.

Should I start a gluten free diet straight away? Or should I wait for the second part of the results? 

I don’t know much about celiac disease, my journey has just started, but would the IgA result being 0.1 above threshold really be positive for celiac disease?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Russ H Community Regular

Those serum tests are for total immunoglobulins in each class (IgA and IgM) and are not specific to coeliac disease. You need the test results for antibodies to tTG2, which is a very sensitive test for coeliac disease. I would follow your doctor's advice.

Link to comment
Share on other sites
trents Grand Master

Welcome to the forum @MariaC!

The test terminology you supplied is unfamiliar to me but I will assume Russ H is correct in his interpretation that they are not specific to celiac disease. Were there other celiac specific tests ordered that you did not list, perhaps ones that were negative?

There are blood antibody tests designed to specifically detect celiac disease and I would encourage you to seek a physician who will run these tests. I would recommend a full celiac panel which would include: 

Total IGA

TTG-IGA

DGP-IGA

DG:P-IGG

Here is an article that discusses the various blood tests that can be run for celiac disease: 

Having said that, villous atrophy of the small bowel lining is the hallmark of celiac disease but your physician is correct in asserting that it can be caused by other things besides celiac disease. Other causes can include CMP (Cow's Milk Protein), NSAIDs, a certain blood pressure medication and other bowel diseases. https://www.verywellhealth.com/villous-atrophy-562583

It is important to understand that should you seek to have additional antibody blood testing done for celiac disease you must continue to eat generous amounts of gluten up until the day of the blood draw.

On the other hand, you could trial the gluten free diet and see if your condition improves. Your iron is in the toilet and that needs to come up. Here is an article that gives pointers for getting off on the right foot with eating gluten free: 

 

Link to comment
Share on other sites
Wheatwacked Veteran

Take the diagnosis and run.  In the worst case you can stop eating gluten free after say a six month trial.  Some, like recovering alcoholics never get over the craving.  Resistance is not futile.  Some wait as much as ten years to finally get the diagnosis.  Be sure to monitor your diet for vitamins and minerals.  During recovery you need way more than the minimum to rebuild.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      124,654
    • Most Online (within 30 mins)
      7,748

    Ilka
    Newest Member
    Ilka
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.7k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      I have had a lot of reflux since starting the gluten challenge. My GI gave me some meds to take to hopefully help a little while on the gluten challenge
    • trents
      Imodium and Pepto Bismol are relatively safe when used occasionally. Pepto Bismol will bind with medications. I cannot take it because it will interact with my coumadin. Pepto also contains aspirin in it so it can make platelets more slippery and the aspirin could also cause ulcers if Pepto is used too often. I'm not saying the restaurant meal is the ongoing cause of your diarrhea episodes. I think more likely gluten is slipping into your diet on a regular basis somehow or you have developed an additional food intolerance. Have you investigated the possible causes of high eosinophil counts? One of them is autoimmune disorders and of course, celiac disease fits into that category.
    • Julianne101
      Thank you for the feedback!  I realize the restaurant meal was probably contaminated but I had no idea a reaction to gluten could last so long!  I’m hoping I find a doctor who will take me seriously.   Is Imodium or Pepto Bismol safe to take to manage symptoms?  
    • trents
      Welcome to the forum, @Julianne101! Your experience is exceedingly common in the celiac community. First, regardless of how gluten free the food was in the restaurant experience you described actually started out to be, you have no idea what measures were taken in the cooking, preparation and handling to prevent cross contamination. Sounds like to me you are either getting gluten from some unexpected source or you have developed additional food intolerances. It is very common in the celiac community to be intolerant to dairy (CMP or Cow's Milk Protein) or to oats (even gluten free oats, the protein avenin) which have proteins similar in structure to gluten and can be cross reactors.
    • Julianne101
      I'm new to this forum.  My sister was diagnosed with Celiac disease 20 years ago right around the time my 2 year-old daughter developed a swollen belly, prolapsed bowell (constipated), intense sweating, etc.  So, my sister suggested maybe it might have something to do with gluten.  My daughter's gastroenterologist said he didn't want to put her through an endoscopy (her blood test was negative) but I was welcome to try the strict gluten-free diet if I felt like it.   I did, and sure enough, withing a couple of days all of her symptoms disappeared.  I was shocked the first time I got her up from her nap and she wasn't literally drenched in sweat.  So, I decided to try the strict gluten-free diet too.  I was very sick with my pregnancy for my daughter and never really felt good since, lots of GI issues (gas and bloating primarily). I found that my symptoms also disappeared on the gluten-free diet.  So, I have been gluten-free ever since.  I avoid milk (except for cheese) because it causes gas and bloating.  Fast foward 19 years to just 1 year ago.  I started taking a new probiotic to try to ease menopause symptoms.  The next day I had sever diarrhea.  I thought that was weird, so I stopped taking the probiotic and started to feel better, but then the diarrhea came back a day or two later and remained on and off every few days for three months! It was nothing like food poisoning or the GI bug.   I got tested for parasites and other infectious diseases but everything came back negative.  So, I thought maybe I was developing a more severe form of gluten intolerance.  I also found out that right around the same time that I got the diarrhea, my brand of oat milk had changed their formula and was no longer using gluten-free oats, so maybe that was the cause. AFter three months, the diarrhea finally cleared up and I became much more vigilent about gluten contamination.  A couple months later I ate out at a restaurant.  The meal was labeled gluten-free, I clarified with the waitress, but the next day the severe diarrhea was back and this time it lasted two months but finally cleared up!  A couple months later, and I am cuurently in my third episode of diarrhea, and I have no idea what may have caused it. I've been to a Gastroenterologist who has tested me for everything under the sun and finds nothing wrong with me.  My colonoscopy is perfect, endoscopy perfect, IgA 184 (normal range), and several other tests all normal except for high eosinophils.  I've lost 20 pounds and struggle with dehydration.  I'm very curious, has anyone else with Celiac disease ever experienced anything like this?  Can people have a gluten contamination reaction last for 2-3 months like this?  The NP I saw in the GI Clinic claims my diarrhea has nothing to do with gluten, but I'm not so sure.  I've asked for a referrral to a specialist.  
×
×
  • Create New...