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Diabetic And Now Told I Might Be Coeliac.

Amberzak

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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.

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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

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