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Advice please

fancy19

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fancy19 Rookie
fancy19
Posted

Hi All, 

First time post.  I'm 40, just had my bloodwork done and asked to be tested for celiac as my mother was just diagnosed with silent celiac on biopsy.  My TTG came back at 250 I believe and normal IgA so she is referring me for a biopsy.  I live in Canada and wait times for this will be between 6-12 months.  I'm going to assume theres a decent chance I'm celiac so should I keep eating gluten until the test is done or stop now and reintroduce a couple months before my test.  I'm just scared to damage myself for that long while I wait in chance I'm celiac.  Any other similar stories?

 

Cheers,

FP

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Victoria1234 Experienced
Victoria1234
Posted
9 hours ago, fancy19 said:

Hi All, 

First time post.  I'm 40, just had my bloodwork done and asked to be tested for celiac as my mother was just diagnosed with silent celiac on biopsy.  My TTG came back at 250 I believe and normal IgA so she is referring me for a biopsy.  I live in Canada and wait times for this will be between 6-12 months.  I'm going to assume theres a decent chance I'm celiac so should I keep eating gluten until the test is done or stop now and reintroduce a couple months before my test.  I'm just scared to damage myself for that long while I wait in chance I'm celiac.  Any other similar stories?

 

Cheers,

FP

Short answer is YES keep eating gluten until the testing is over. If you go without and reintroduce, your body will react much worse to the gluten. If you have any symptoms now, they will be multiplied. New ones might pop up! This is just what happens to many, many of of here. You don't have to eat much, a sandwich a day will be fine, if you wish to cut back.

take this time to start looking up new recipes, and read up on the 101 topic here on the forums. 

Good luck!

fancy19 Rookie
fancy19
Posted
  • Author

I also have to mention that I have what my derm says is psoriasis but I"m starting to think maybe related to this with the itchy rashes i get on my butt checks, knees and elbows when I have flares.    I was also a heavy drinker for years before I quit a year ago so I hope its not related to that.

cyclinglady Grand Master
cyclinglady
Posted

You are in a difficult situation.  I hope another Canadian can offer advice, but in the meantime, I think you have a few options.  You could keep eating gluten until your endoscopy.  You can periodically call to see if there have been cancellations.  You could go gluten free and then reintroduce gluten 2 to 4 weeks prior to the endoscopy to get an accurate result.  You could get your doctor to diagnose you based on a full celiac panel, family history, reaction to the gluten-free diet and follow-up blood tests.  

Only you and your doctor can decide what is best for your current health issues.  

 

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted
3 hours ago, Victoria1234 said:

Short answer is YES keep eating gluten until the testing is over. If you go without and reintroduce, your body will react much worse to the gluten. If you have any symptoms now, they will be multiplied. New ones might pop up! This is just what happens to many, many of us here.

Yes exactly this. I second the motion. My story unfortunately unfolds in a way I went gluten-free out of desperation since my efforts over decades to get help in allopathic medicine failed to connect the gluten /food dots. It was always diagnosed something else. By the time I did my gluten challenge with a Dr.  willing to test me , I was very ill from reintroducing gluten and could not finish the 14 day gluten challenge I was instructed to do. I could only get 6 days as every system in my body revolted badly.

If your body currently has gluten issues the gluten exposure is providing a working around it/ somewhat tolerating it. Since you have a Dr and a celiac positive relative this is progressing well, you can see it through. Those of us who went gluten-free  prior to gold standard testing have a patchwork medical history of misses and misdiagnosis decades long that drove us to going gluten-free prior. Our path is not ideal and is thankful my not yours. Follow Victoria1234 advice.

Eat the required amount the newbie testing thread suggests to stay the course to your scope. To stop gluten then reintroduced is like trying to switch gears with out the clutch. Good luck.

fancy19 Rookie
fancy19
Posted
  • Author

Thanks for the reply everyone.  Unfortunately the wait time for endosocpy/GI consult in Nova Scotia is at almost 300 days.   Wonder if it would be worth trying to find a private clinic and just pay.

Celiac's Wifey Explorer
Celiac's Wifey
Posted
On 8/5/2017 at 9:07 AM, fancy19 said:

I"m starting to think maybe related to this with the itchy rashes i get on my butt checks, knees and elbows when I have flares.

I don't know if this would be a faster possible route in Canada or not, but this sounds like possible dermatitis herpetiformis - a skin manifestation of celiac disease. You might want to read up on it and figure out if a scoop skin biopsy of your rash (very important that it be next to a leison NOT on it) would be faster to get than 300 days wait for the endoscopy. A diagnosis of dermatitis herpetiformis is considered a diagnosis of celiac disease. 

Open Original Shared Link

Open Original Shared Link

My husband was diagnosed by skin biopsy as a kid (on the other hand, psoraisis  & celiac are related too  - his dad has both.)

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  • 2 weeks later...
fancy19 Rookie
fancy19
Posted
  • Author

Well I had my GI appointment last week, got in quick I suppose as my GP noted some weight loss as well.  GI basically said with my family history and TTG over the max 250 she can diagnose me but still wants to do the biopsy to confirm and get a baseline.  I'm happy with that because I've been having some irritating throat symptoms that kind of bother me and would prefer they have a look at everything.  Even better news is that there is nobody on her cancellation list for a scope so I'm on it and should have it done within the month :)  

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