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Newbie

Andy1991

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Andy1991 Newbie
Andy1991
Posted

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
kareng
Posted

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
Posted

 

squirmingitch Veteran
squirmingitch
Posted

Also this:

 

GFinDC Veteran
GFinDC
Posted

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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      Welcome to the forum, and thank you for sharing your detailed experience. It sounds like you’ve been through a lot over the past several months, and it’s understandable to feel frustrated after navigating unclear diagnoses and conflicting advice. Since you’ve found relief with a gluten- and corn-free diet, it might be worth continuing that approach for now, especially given your current commitments to culinary classes. You could consider working with a knowledgeable dietitian or a gastroenterologist who specializes in food intolerances and celiac disease to explore potential intolerances or other conditions without immediately reintroducing gluten. If confirming celiac disease is important for your long-term health management, you could plan for an endoscopy during a less busy period, ensuring you follow the gluten challenge protocol beforehand. In the meantime, prioritizing your well-being and avoiding known triggers seems like a practical step. Always advocate for yourself with doctors, and seek second opinions if needed—your health concerns are valid. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
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