Post diagnosis / Celiac disease advice

[RTesp]

Hey all I’m new to this form and newly diagnosed with celiac disease less than a week ago. I am 26 years old and a respiratory therapist at Johns Hopkins! ! Have been out of work though coping and controlling my celiac disease. 
 

I recently got diagnosed after a long course of a Giardia infection. I am seeing a dietitian this friday , but otherwise I have been strict gluten free for about 5 days now paying attention to labels and I have two gluten barcode scanner apps as back up. 
 

Recently and maybe regrettably, I tried to incorporate a dairy (unknowing the risk of celiac and lactose intolerance) into my diet, Greek yogurts, creamy buttery mash potatoes, and creamy vodka sauce and the results were very bad, diarrhea wise but not too much on my stomach cramping. I’m not sure if I should get an official lactose intolerance test or not… I’ve had these foods in the past with what I noticed not too big of an issue, but perhaps too much at once and it’s something I should avoid from now on or avoid dairy in general for now I think. Will talk to this with my dietitian! 
 

Overall I have been feeling overwhelmed, emotionally, and so on. So I wanted to come here to be apart of a community where everybody understands eachother and maybe you can tell me your story, beginning of, and experience with celiac disease or lactose intolerance from your diagnosis to your current management of it. Or any words of advice or encouragement - I hope you all are doing well, and if not … will be doing well!  I wish anybody or reads this nothing but positivity and the best vibes! 

[trents]

Welcome to the forum, @RTesp! Dairy intolerance is very common in the celiac population but often improves with time as healing of the atrophied villous lining of the small progresses. Thorough healing of the villous lining may take two years or more. Dairy intolerance can be due to either the lactose (sugar component) or the casein (protein) in dairy. Intolerance to soy, egg, and corn are also common so keep an eye out for that.

A diagnosis of celiac disease can be overwhelming at first because it demands so much change and can be socially isolating. Eventually you adjust and it becomes the new norm. This might be helpful: 

Phone apps can be helpful but are only as good as the data base is kept current. You can do the same thing by reading labels. Over time, you will develop a sixth sense of where gluten can be hidden in processed foods.

Edited February 8, 2024 by trents

[Scott Adams]

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:

 

Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease:

This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together: