New To Celiac

[SFCWIFE]

For over Two Months, I have been having Severe Pain on my right side side of stomach  While I had Total Hysterectomy and No Appendix this was able to be rule out. Also having History of Kidney Stones I knew this wasn't the same pain, for After I ate, or went to bathroom I would be in pain that would cause me to throw up or double over in pain.  I've been through MRI/CT Scan which MRI showed Scar Tissue I am 3 wks post op of Laparoscopy when the Surgeon went in, there was NOT as much Scar Tissue as MRI stated Last week I had Colonoscopy & Endoscopy but before Surgery Surgeon stated My Blood Work Tested POSITIVE for Celiac ( which I never hear of )  This is all NEW to me and right now I am sooooooooooooooooo Overwhelmed    F/U appt with Surgeon Nov 12th to get Biopsy reports    In the mean time waiting to get appointment with  Nurtritoin   Specialist...  I was told I could have Captain Crunch Cereal  so had some dry, stomach hurts,  hearing this is easy isn't true especially when you are USED to eating whatever you want. Today my stomach hurts soooo bad I felt another trip to the ER but I already know they won't do NOTHING for me....   Can someone PLEASE share there EXPERIENCE with me and help me get started or give me some suggestions 

 

Thank You 

[bartfull]

I'm so sorry you're hurting. And I'm so sorry some idiot told you to eat Captain Crunch.

The first thing you should do is go to the coping section here and read the Newbie 101 thread that is pinned to the top. Make sure you click on all the links in the various posts there. Maybe even take notes. Seriously.

Then be prepared to go through gluten withdrawal. Not everybody does but many do. You may find yourself feeling much better within a few days to a week, then all of a sudden - boom! You'll get a headache, a dizzyish feeling, ravenous hunger, and terrible mood swings. That may last a few weeks, but all the time that is happening your gut will start feeling better. Then, after the withdrawal, you should start REALLY feeling better. So in other words, in another few weeks, your life will be WAY better.

Not to say it is easy adjusting to the gluten-free diet, but it isn't as hard as you might think once you get used to reading labels. As a matter of fact, at first you should concentrate on eating nothing but whole foods - meats, veggies, fruit. Nothing processed at all. After a while you can start adding gluten-free substitutes. Udi's whole grain bread, or Canyon Bakehouse 7-grain are good choices. Stay away from Ener-G breads. They are so nasty they'll make you cry.

You need to learn to read labels, but it's not that hard. Wheat in the US and Canada will ALWAYS be listed in the ingredients if it's in there. Rye is pretty much only in bread or crackers. Barley or malt are the other things. Oh, and oats. Oats are not a gluten grain but they are harvested on the same equipment and stored in the same bins so unless you get Certified gluten-free oats, stay away from them.

OK, now we get to cross-contamination. Besides needing your own butter and condiments so they don't get contaminated by a gluteny knife, you need to watch for CC in products. Some companies may process wheat on the same equipment they use for gluten-free stuff and there's no law stating they have to put that on the label. BUT!!! The good news is there are many companies that will ALWAYS tell you. Any Kraft, Unilever, Con-Agra, or Nestles product - just read the label and if it doesn't have gluten grains in the ingredients or say, "May contain wheat" (or rye or barley), you can eat it safely.

A good example of this is nuts. I got some Fisher cashews for Christmas last year. I contacted the company and sure enough, they process wheat on the same line as their cashews. So I gave them away and bought myself some Planter's. (A kraft product).

Now, you are among experienced friends here. We will help you through this and even though you may not believe this now, pretty soon you won't even THINK about it. It becomes as natural as breathing. If you can cook, you'll be fine. You'll be better than fine. And even if like me, you are a LOUSY cook, you'll be fine.

Honestly? Eating out is the ONLY part that is still hard for most of us. Depending on where you live there may not be too many safe restaurants in your area. But you're not going to go to restaurants for a while until you get a handle on the diet, right? Right. So, go read the Newbie thread and then cruise around the rest of the site. Come on back and ask as many questions as you want. We're here to help.

[SFCWIFE]

Thank you so much barfull for Replying to my Thread :).... WOW  it's still soo much to take in but One day at a time...Hmmmm how about all that Halloween Candy I just had  #FAIL    

 I guess my other question is... COULD THE BLOOD TEST BE WRONG ??????????  That tested POSITIVE for this  but still waiting for BIOPSY ?????  

[cyclinglady]

Chances are the blood test is not wrong.  ?. Member, NVSMOM, can rattle off the statistics (you can search her posts).  The biopsies should confirm the blood test, but remember, the small intestine, if spread out, is the size of a tennis court.  It is easy to miss damaged areas.  

Getting a celiac diagnosis is overwhelming!  There is a grieving process.  But the end result is that you will feel better.  It will take lots of time, so do not get discouraged.  Listen to Bartie's advice.   It is spot on!  ☺️

We are here to help!

Halloween candy?  Here is a list:

https://www.celiac.com/articles/23788/1/Gluten-free-and-Gluten-safe-Halloween-Candy-for-2014/Page1.html

i would strongly recommend that you stick to whole simple foods as much as possible.  Your gut is damaged and eating processed foods that contain chemicals and additives can further irritate your gut even if they are gluten-free.  Save the candy for later when you start to feel better!