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Andy1991

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Andy1991 Newbie

Hey guys! 

 

So this is officially my first forum post ever. 

Approximately a month ago I was diagnosed with celiac disease after struggling with depression, anemia, and chronic constipation for about three years. 

Since then I've read three books, multiple forums and have basically been trying to figure this out on my own. My doctor who is great has helped me with as much knowledge as she has (which was openly admitted as not much). I have an appointment for a colonoscopy around mid september and have tried everything from water-laxatives (anything you could imagine inbetween) to help with my most persistent and annoying symptom.  

I feel like my symptoms and discomfort are never enough to warrant much effort or guidance. 

So far I've managed to get referrals for a dietitian and my scope.

 

I guess right now I'm typing in circles as I feel a bit overwhelmed and am looking for some help. 

 

 

Is there other tests I should be asking for? 

Judging by all the books I have read at this point - healing seems to be a waiting game (up to two years) - however I don't feel any different at all and have been seriously committed to the gluten free lifestyle. When will it get better? 

I live with my boyfriend who is not celiac, I'm not sure how serious cross contamination is? Is cooking in different pans enough ? or should I be deep cleaning my oven? 

I have also read a lot about lactose intolerance, my doctor didn't specifically mention this to me but is there any other foods besides rye, wheat, barely and oats anyone would recommend cutting out? 

 

 

 

 

 

I want to feel better and take this seriously, any guidance would be greatly appreciated :wub:

 

 

 

 

  

 


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kareng Grand Master

Often people cut out dairy for at least the first few months.  Celiac damages the part of your intestines that helps you digest lactose.  So that might help.  

 

Also, read the Newbie 101 thread for some ideas.

 

 

squirmingitch Veteran

 

squirmingitch Veteran

Also this:

 

GFinDC Veteran

Hello Andy,

It sounds like you have already started the gluten-free diet.  If you are waiting for the endoscopy (not colonoscopy), then you should still be eating gluten.  Starting the gluten-free diet should wait until all testing is completed and test results known.  Other wise the tests won't give accurate results.  Your doctor should have told you this but many of them don't know much about celiac disease.  The endoscopy should include 4 to 6 biopsy samples for analysis.

Cross-contamination is a serious problem.  The immune system is activated by very tiny amounts of gluten.  And the immune reaction doesn't stop just because the food has left your digestive system.  So the damage can be  going on for quite a while.

Some people have no GI symp0toms with celiac disease.  That is called silent celiac.  Other people have no_GI related symptoms, like joint pain, skin irritation,hair loss etc.

Other tests you should be getting are vitamin and mineral levels.  Celiac impairs the ability to absorb nutrients so you may be low on vitamins your body needs to heal it's tissues.

Welcome to the forum! :)

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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