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

Diabetic And Now Told I Might Be Coeliac.

Amberzak

Recommended Posts

Amberzak Newbie
Amberzak
Posted

Hello.

I'm a type one (insulin dependent) diabetic. I can't control my sugars no matter how hard I try, I constantly go hypo (low sugars). I spoke to a nutritionist to try and see where I was going wrong. We talked about other issues I have, and she gave me some information on coeliac. She said I should speak to my doctors about getting a blood test.

I hope this doesn't sound pathetic, but it would be a bit of a relief to find out all my many health problems might actually be one thing. I have been thinking for a while I might had IBS or an ulcer or something.

She suggested I keep information on how I'm feeling. I already keep a food diary because of my diabetes. In fact we noticed a pattern that I often have poor control when I eat a gluten rich meal.

After reading up on it, so many of the things match. I stopped eating wheatabix ages ago because I would feel really ill after. I also go through stages where I cut out bread and get more energy when I do.

But it was the other symptoms too: i always get migraines, stomach aches that leave me crying in pain, and I'm always so tired. But I have just thought it's because of my diabetes.

I wondered if some of the other things are linked. I often get bad acid (which is why I thought ulcers). I get hiccups a lot, like at least 2 to 3 times a day. I get twitches with my hand and I drop things. Oh, and I get muscle cramps. Sometimes my vision goes blurry (but that could be the diabetes). Sometimes I find it really hard to make my brain work.

I am also a high functioning autistic.

Thing is, I don't know where to begin with the doctors. My nutritionist said I need to make an appointment with my doctors, but I have to do a phone appointment (my doctors are awful). So what do I say?

I'm over weight. I thought all coeliacs were skinny but research says that's not the case. Also, most type one diabetes are skinny and yet I'm still type one.

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Welcome to the board.  :)

 

Diabetes and Hashimoto's thyroiditis are the most autoimmune diseases found to co-occur with celiac disease.  Your list of symptoms definitely point towards celiac disease - your symptoms are very similar to some of mine.  I am glad you being tested for it.

 

The tests you want are:

tTG IgA and tTG IgG

DGP IgG and DGP IgA

EMA IgA

total serum IgA (a control test)

AGA iGA and AGA IgG (older and less reliable tests)

 

Get as many tests done as possible as the tests mostly have a sensitivity between 75 and 95% which means they can miss 5-25% of celiacs.  The more tests you get done, the more likely the disease will be caught.

 

Ensure that you are eating 1-2 slices of bread, or the equivalent, in the 8-12 weeks prior to testing.  If you go gluten-free before the tests, that could cause false negatives.

 

This report has very good info on the tests on pages 10-12: Open Original Shared Link

 

The doctors may want to do an endoscopic biopsy if the test results are not clear.  You need to be eating gluten in the 2-4 weeks prior to the procedure.  Ensure they take 6 samples or more.

 

And don't worry, it doesn't sound pathetic to hope it's celiac disease.  I completely "get" that.  It's one of the simpler autoimmune diseases to treat - no drugs or surgeries needed.  The recovery can take months to years on the gluten-free diet, but we have a good chance for a recovery. :)

 

Good luck with the doctors.  :)  Just let them know you want the full celiac disease test panel run (bring the test list) because of your symptoms, and because being diabetic predisposes you to celiac disease at a greater rate than the rest of the population.  My only advice would be to not tell them that you think you have celiac disease based on what you've read on the internet.  Doctors seem to HATE to be told what to do and they think we all read misinformation on the net - I've had two doctors tell me to read less.... I guess though medical journal articles I read aren't helpful.  LOL

 

Best wishes.

Amberzak Newbie
Amberzak
Posted
  • Author

Wow. Thank you. That's amazing information. Really helpful. I know what to ask now.

1desperateladysaved Proficient
1desperateladysaved
Posted

I remember feeling both upset and relieved when I got my diagnosis.  I was sorry my diet needed to change again, but so glad that my health should improve and that symptoms were not just something I made up.  My symptoms did improve and my energy level came up; I hope all of the same for you.

 

Dee

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,620
    • Most Online (within 30 mins)
      7,748
    Loni75
    Newest Member
    Loni75
    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

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you, really.  I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem. It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease. I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I would only add that cross contamination with wheat may still be a possibility, so it's still best to seek out buckwheat that is labeled "gluten-free."
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Hello, I've been diagnosed with IBS since I was little. I’ve visited many doctors because my intestines have always been very reactive to food. I have chronic swelling, and I struggle to gain weight. This year has been worse than others: I started noticing fatigue, loss of muscle mass, and many digestive problems, especially after consuming products with gluten. My doctor suggested that this might be due to some imbalance of gut bacteria, so I started taking Bifidobacterium Infantis supplements. However, my symptoms have been getting worse every day. I experience nausea, frequent abdominal pain, migraines, and palpitations after eating. I had these symptoms before, but now they are more intense. I thought I might have Non-celiac gluten sensitivity or Celiac Disease, so I took a home test for Celiac, and it came out negative (though there may have been an error—I was nervous and accidentally contaminated the sample with air bubbles). Based on your experiences, should I pursue further medical exams for Celiac? I’m worried about being underweight and about my blood test results, which, even if still within normal ranges, have been declining each year.
×
×
  • 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.