r/lactoseintolerant • u/night_intel • 5d ago

Newly diagnosed - now what?

Hey there my fellow lactose intolerant baddies!

I’m newly diagnosed lactose intolerant. My GI doctor called with the results and that was it. No resources, no follow up appt, nothing. I’ve been avoiding dairy and taking lactase pills when I want to enjoy a meal out.

So, is it really as simple as avoiding dairy??

Does anyone have any reputable, reliable resources that might help?

I’d seeing a dietician a good idea or is this something most manage on their own?

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u/missilekidd 5d ago

You could avoid all dairy or just opt for lactose free stuff. They have a lot of lactose free options at grocery stores!

Some of my fave lactose free products I have in rotation are: Fairlife milk, Fage Best Self Lactose Free greek yogurt, Nurri protein shakes, Green Valley shredded cheeses/cream cheese/sour cream/butter, Chobani 20g protein yogurt drinks, and Lactaid cottage cheese.

When I go out to eat, I take lactase enzyme pills. I buy them in bulk at Costco.

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u/night_intel 4d ago

Glad to know Costco has lactase in bulk, thank you! Fairlife & fage were immediately added into my rotation and I’m psyched to hear nurri are lactose free!! Thanks!

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u/somehowrelevantuser 5d ago

tbh i think u can probably manage it on your own. but yeah just avoid dairy. if i were u i'd look up a list of all the terms products use for dairy so u dont get accidentally lactosed.

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u/night_intel 4d ago

This is helpful as I didn’t consider the items where lactose is hiding, also why I think I’ve accidentally lactosed myself many times already haha thanks!

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u/XladyLuxeX 3d ago

Did you go to an actual GI and see an allergist?!?! I had to see a nutritionist and I had a follow up every 3 months till I got my food triggers down.

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u/night_intel 3d ago

I saw an actual GI, but it was literally just a phone call letting me know my breath test indicated I’m lactose intolerant 🙃 the nurse I talked with said I could seen a dietitian if I wanted but that most of their patients in my scenario don’t so I didn’t think it sounded necessary

I have an appointment tomorrow with a new PCP tomorrow and have been experiencing tons of other autoimmune & allergy symptoms (mainly allergic reaction to my own natural progesterone hahahaha), so have been planning to push to see an allergist or rheumatologist. Idk, something has to change because I am miserable

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u/XladyLuxeX 3d ago edited 3d ago

I want you to get tested for Mast Cell Activation Syndrome (MCAS) or systemic mastocytosis. You need a GI and allergist and endocrinologist who work together. How many times have you had COVID? A rheumatologist is for already being diagnosed with an auto immune disease and for arthritis. You need testing by an endocrinologist first before you see a rheumatologist.

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u/night_intel 3d ago

I’ve brought up MCAS to 4 different doctors and get shut down despite so many of my symptoms aligning. Ive been followed by an endo since I was 11 as I have a prolactinoma/history of secondary hypogonadism & low cortisol, but haven’t brought up my allergy symptoms to her because I’m just tired of the healthcare system and fighting. I had c diff for an unknown time (believed ~3 years, but no one did a stool test until it was discovered) and gallbladder issues I had to advocate so hard for myself to resolve, so many thing I know are part of MCAS, but I just struggle to get everything on the table in one visit so they can get a full picture because so many physicians want to focus on my endocrine issues. I had confirmed COVID twice.

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u/XladyLuxeX 3d ago

You basically need to shop doctors who specialize in it. Going to a PCP won't help unless your insurance makes you have a referral. PS 85% of people with mast cell have had COVID 2-6 times.

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u/night_intel 3d ago

Appointment has been made with an allergist recommended to me by a local nursing friend - Thanks for your direction and knowledge, I really appreciate it!!

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u/XladyLuxeX 3d ago

You are so welcome ps you can message me anytime I'd love to help you along the way!

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u/No_Cupcake_9921 master intolerant 3d ago

Look for lactaid brands in bulk. I buy mine from Costco at around ~25cents a pill. Always always always go more than you think you need; better safe than sorry.

Keep Immodium around for emergencies when you forget lactaid or don't take enough. It doesn't stop the gas but it does slow down the loose stools and relieves some of the pain, which is a HUGE relief.

Avoiding dairy will always help, but certain ingredients may have surprise dairy like evaporated milk powder.

Last, manage your fiber intake. Psillium husk helps slow diarrhea, so even if you ingest dairy having a balanced diet helps.

Hope this helps!