New dx: overwhelmed, mourning and slightly pissed, but hopeful to feel better

[NicMFT]

I’m new here, so I’m not sure if this is the best place to post about this or not.  But it’s related to dx, so I’m rolling with it!  I was kind of blindsided by this dx 48 hrs ago, in the midst of taking care of my sick toddler, a newborn and an attn seeking 4 year old.  I started having a lot of problems after what I considered a bout of the stomach flu in early March that never went away. After three rounds of blood work and a stool culture all coming back normal, I got referred to GI and was scoped — but still not dx-ed.  My biopsies weren’t that super substantive at the time, and I received a dx of gastritis, ibs and there was an ulcer in my colon.  I went on a special diet, which I had pretty much been on since March, but tried to avoid foods on the gastritis and ibs no no lists.  The doc had me start on Protonix, which helped a ton.  Very few cases of diarrhea, no more vomiting until an incident of trying to reintroduce foods, and intermittent nausea.  Before my f/u appt, the doc had me do a celiac panel and a genetic markers test.  The blood work on my panel came back negative, but I tested positive for one of the genetic markers.  He said in reviewing my biopsy that there was underlying inflammation beneath my microvilli that made him cautious and want to explore the genetic markers.  He told me suspected the panel would come back negative, but considering the underlying inflammation, the positive genetic marker and my symptomology, celiac disease was a warrented dx.

So I’m pretty upset and having my gluten funeral over here.  My husband is being very supportive, but we are just starting to dip our feet into what feels like an ocean of information.  I’m learning that strict adherence to gluten is necessary, but also learning gluten is in almost everything!  I’m glad that my prenatal vitamin (which I have to take since I’m still nursing) and probiotic are gluten-free, but I’m annoyed that Tylenol isn’t.  Which let’s face it, Tylenol is so useless.  I’m so over that useless drug!  And with my ulcer, I can’t have any nsaids.  

I’m not ashamed to admit that I ugly cried when I found out I have celiac disease.  I was shocked to learn that a bout of what the doc perceived and treated  as contact dermatitis right at the end of February was also this fricking disease.  I’m annoyed that it isn’t as simple as finding gluten-free on a package, and I’m scared since I don’t know all the buzz words for a gluten crap storm on the ingredients list. Let’s review that I also have three children, 4 and under.  Ain’t nobody got time for this!

I was encouraged to find that some of our local restaurants have gluten-free menus (thanks, Find Me gluten-free!), while equally discouraged that most of these restaurants have fools that know nothing about cross contamination and you end up getting glutened.

Most people have no idea.  I had no idea!  I was most people just two days ago, and now I’m this. Grrr.  My husband’s aunt, in an effort to be “nice” and “supportive” sent me a no bake cookie recipe because “it doesn’t even need flour”.  I nodded and let her have her moment of feeling helpful, while knowing I can’t have the oats or the vanilla in it at the very least.  It’s hard to not focus on what I can never have again when people are trying to “help” by showcasing things I can never have again.

I’ve read a few articles, and I’m limiting how much I’m allowing myself to dive into my patient education right now bc I know I need to pace myself so I’m not completely out of my mind with how overwhelming this is.  And I’m giving myself the space to mourn the changes this will require for the rest of my life.

At the same time, though, I’m grateful for an answer that just may make me feel better.  I can’t remember what it’s like to feel better. ?  It’s sad, but true.  And I’m also grateful that this is happening to me, and not one of my kids.  I never know, it could happen to one of them.  But for now, it’s me.  And I’d walk this walk a thousand times over if it could mean they don’t have to.  But I wish— I WISH— I didn’t have to..

So hi, I’m new here.  Thanks in advance for welcoming me in!

[GFinDC]

The gluten-free diet can be overwhelming at first.  But in time you can get used to eating different foods and even like them.  It's not so bad as it may first seem!

Welcome to the forum!

[Ennis-TX]

Starting with a whole foods diet is useful and great at first, but a heads up, there is gluten free everything now days. I will say limit gluten free processed foods, most are carb bombs, and diabetes is more common amoung celiacs. Limit dairy at first also, the damaged villi mean we will have issues with the enzymes to break it down til healing. Oats are commonly CCed, and about 10% of celiacs also react to them. Vanilla extract...there are plenty of gluten free versions, my bakery has been using both Lorr Ann Oils, and Spicely Organics which are both labled gluten free, but there are plenty of others.
Here read over the newbie 101 sections, if you need help or suggestions for transitions we can help, I do gluten free chef work, and run a small gluten free bakery.
https://www.celiac.com/forums/topic/91878-newbie-info-101/
And a hopeful list of ingredients and foods, I update with a new list quarterly with stuff I find.
https://www.celiac.com/forums/topic/121802-gluten-free-food-alternative-list-2018-q3/

[NicMFT]

Thank you!  I did read through the newbie pinned post; it was really helpful. I’ve been off dairy since early March as well, as well as spicy and acidic foods.  The doc said I should be able to go back to them once my stomach heals, so I guess that’s something.

Thank you for the encouragement and tips, though!