Newly Diagnosed & Scared

[cwb89]

Hello All, 

I am new to this group, new to the Celiac lifestyle & honestly I'm terrified & not handling it very well. I have very bad anxiety & I've started having insomnia... literally laying awake all night. A little about me- I am 25 & on Christmas Eve I started having a severe burn in my stomach, as well as, extreme nausea. I went to the doctor & he said it was an ulcer. He prescribed me 20mg a day of Prilosec. Fast forward to March and the pain/nausea was worse, never ending and i'd lost 15ish pounds. I was sent to a GI for an endoscope. They found gastritis, severe acid reflux & increased lymphocytes. Also, said my biopsy showed slight damage to the villi in intestines. They upped me to 2X a day prilosec but my stomach still burns, I'm always nauseated, feel horrible mentally & I have no appetite. Also, I have a distant cousin on my grandmother's side that has Celiacs. However, my blood test was negative for Celiacs but they said that is normal at first. The Dr said they are pretty sure I have Celiacs, to go 100% gluten free for 6 weeks to see if my stomach feels better & then eat gluten to see if it affects me. They also said to get my 3 year old daughter tested to be safe. I feel so overwhelmed, terrified, and lost. :'( do I need to check all shampoos, lotions, etc? What about my husband & daughter eating or using gluten products? Should they(at least our 3 y/o) go gluten-free too? Any info on where to start, hope, and tips would be very much appreciated.

-Crystal.... Spokane, WA

[nvsmom]

Welcome to the board.  

 

Most of us were pretty upset by the diagnosis, the rest of us were relieved to finally have an answer.    The first few month on the gluten-free diet are, by far, the hardest.  Add to that the fact that many celiacs experience withdrawal in the first few weeks, which often includes more fatigue, headaches, moodiness and anxiety.  It usually passes within about 3 weeks so hang in there.

 

If you can, make your home gluten free.  Doing so will make your life much simpler and keep you safer.  If you do have a home with gluten, you'll have to be aware of cross contamination from crumbs.  You will have to have your own butter, jams, peanut butter, mustards and any other condiment (like syrup) that may have touched a food with gluten.  You will need a new toaster that normal bread can NEVER touch - toaster ovens can be still used if they are well cleaned out and normal bread isn't used in it anymore unless you clean it thoroughly after every use.  You may also need a new collander if your old one could have held gluten or sifted flour.  You may need to get rid of sugars, baking soda, and cocoa if a flour coated measuring spoon was ever dipped into it.  Check stuff like boullion, soy sauce, BBQ sauce, worchestershire sauce and salad dressings as many have gluten.  

 

And yes, you will need to check lotions and shampoos if there is any chance they will get into your mouth (eating with gluteny hands can get you sick, and conditioners or shampoos can get into your mouth in the shower... or at least it does with me.  

 

If you family eats gluten, they will have to wash, brush, floss, and rinse before they kiss you.  Gluteny cheeks can get us, and so can a crumb in the teeth.  If you family goes gluten-free at home, it will make life much simpler for you.

 

Make sure your children get tested before they go gluten-free.  If they are eating any gluten at all, they will need to retest every couple of years for the rest of their lives.

 

The Newbie thred is a good place to look for more info: https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Be patient.  It takes months to get better - sometimes years.  Everyone makes mistakes in the first few months while getting used to label reading and being extra careful while eating out.  Just do your best, and by the fall I am sure that you will be comfortable with the diet.  Hang in there.

[squirmingitch]

To lessen the anxiety over grocery shopping while you get used to this whole new lifestyle then just eat whole foods. Shop the perimeter of the store. Fresh fruits & veggies are always gluten free, fresh meats, you can eat frozen fruits & veggies too as long as they don't have any sauces that contain gluten. You'll be doing a lot more cooking but like I say -- until you get the 'rules" down this will keep you safe as well as take some of the pressure off you -- it will also have the added benefit of helping your gut to heal as you won't be eating processed foods with all their chemical & additives - you'll just be eating wholesome goodness. 

If you make your house gluten free then the hubby & your child can eat gluten when they are NOT at home. That is assuming your daughter tests negative. You can allow her to have say pre-packaged gluten cookies or crackers & she can eat them outside since it's nice weather now. You'll need to make sure she's getting gluten every day until she gets tested otherwise her tests will come up false negative.

Take a magic marker & start going through every single foodstuff in your kitchen & fridge & read the label & if it's gluten free then use the marker to write gluten-free in big letters on it. That also helps to get you used to reading labels. Your motto for the rest of your life is going to be "Read Every Label EVERY time".

 

BTW, I don't think there's a one of us here who didn't have at least one meltdown (crying jag) in the grocery store in our first couple of months gluten free.

 

At this point in time don't try to immediately start replacing all the gluten breads, pastas & pastries with gluten free versions. They won't taste the same & you'll just frustrate yourself even more. There is time to get into all that later. You have enough on your plate right now (pun intended). We've all been there so if you want to scream, cry, pitch a fit, have a pity party -- we're listening. Likewise when you want to celebrate little victories -- we're here to share in your celebration.

[bartfull]

Don't be scared. Be hopeful.  Because although it isn't easy at first, it DOES become easy after a while. And the whole time you're getting used to it you will start feeling better. Anxiety is one of the symptoms of celiac and it will ease along with other symptoms. And remember, you're not alone. As Squirming said, we ALL had meltdowns in the grocery store at first. We have all been through what you are going through now. And we are here to help.

 

When I first started I swear I must've spent half the day here every day. I had so much help, from great advice to shoulders to cry on. It's been almost four years for me now and I feel GREAT! I stick around because I want to pass it forward, plus I keep learning new things.

 

You'll get through these first tough months and be feeling better soon. (((((HUGS)))))

[StClair]

Everyone else has said the important things so well that I will only add a couple of things, as a fellow newly-diagnosed celiac. It has been about a month now, and I think I'm just now starting to get a little feel of how to handle the diet and precautions. Great advice to stick to whole foods, which I have tried to do. I look upon packaged gluten-free products as treats rather than diet staples. The products I've found comforting are Glutino plain crackers and Udi's Multi-Grain Bread, which taste, to me at least, almost like the real thing. I might have the bread, toasted, with a little jam and tea, or the crackers with some natural peanut butter once in awhile, and it makes me feel a little more normal.

I had terrible esophagitis and gastritis, and this in fact led to my celiac diagnosis. Nothing worked for me, including double Prilosec, UNTIL I was three or so weeks gluten-free. Now I can go entire days without pain in my throat and stomach. I hope this gives some encouragement that things are about to be much better. I also had the gluten withdrawal symptoms, like continual hunger, crazy fatigue, etc, but there is a light at the end of the tunnel, and I feel like I am starting a new life.

Best of luck!

[squirmingitch]

Yes, as to the continual hunger -- stark raving mad hunger 24/7! -- it is part of the gluten withdrawal for many of us. I was one. I was ravenous constantly. I will tell you what the good people on here told me & it really did help. Have some fat with protein at every meal -- in fact; at every snack. And be SURE to start off your morning with some protein with some healthy fat. Eggs fried in coconut oil. Bananas & peanut butter, apples & peanut butter, nuts like cashews, almonds, macadamia. Don't cut all the fat off the steak -- eat some of that fat! Don't be all concerned with gaining weight at this point. Your body needs the nourishment it has not been receiving due to malabsorption. EAT.