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New To Forum Lots Of Questions

nurse93

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nurse93 Newbie
nurse93
Posted

I will try to make it brief. but I would like to give a little hostory. 8 months ago diagnosed with microscopic colitis. Told my GI doc that I learned there was a link to MC and celiacs. He dismissed my concerns. Also had endoscopy which showed blunted villi. Fast forward to recently. I have a heart condition that I've known about since 2008 and was told that sometime in the future would need open haert surgery for valve replacement. Then all of a sudden I was scheduled for August 11th of this year. This week. On my heart forum there is a lady who has celiacs and she said she had to have a tissue valve instaed of mechanical due to celiacs and absorbtion issues. Went back to my GI doc and told him I needed to be tested. He reluctantly agreed. He called me friday night (while I was having a beer) and told me I had celiacs. Test was greater than 100 and that normal was 5. I continued to drink my beer and another.. Sorry for long post. But now have lots of questions, have not gone gluten free yet spent today with hubby cleaning out cabinets and fridge for my gluten-free foods.Spent 2 hours in the supermarket. Also puchased some books to try and figure all of this out. Oh and good news saw a specialist and had more tests and they are postponing my surgery for now. I thought heart surgery was going to be tough, I think this may be tougher.

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mommida Enthusiast
mommida
Posted

Well it is a good thing your diagnoses came before going through surgery and trying to heal when your body is in overdrive hurting itself!

I don't know about the different valve choices and how Celiac determines one or another.

Going gluten free is a life changing "grieving" process. You find out who your friends are. Your tastebuds adjust.

You can even dream about food. You will find it is a lot easier to travel with a stash of food.

This is a great place to be taken under someonw's wing. You can vent here, and some one will understand exactly why that situation is a reason to vent.

Don't start out on all the gluten free "replacement" pre-made products yet. Give your tastebuds some time to forget wheat.

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Lisa Mentor
Lisa
Posted

Don't start out on all the gluten free "replacement" pre-made products yet. Give your tastebuds some time to forget wheat.

GREAT advise! :rolleyes:

Start simply...meats, seafood, rice, potatoes, fresh fruit and veggies. Limit your dairy, or eliminate it for a month or so.

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lucia Enthusiast
lucia
Posted

Don't start out on all the gluten free "replacement" pre-made products yet. Give your tastebuds some time to forget wheat.

I also agree with this. I think some people rely too much on gluten-free foods when they start off. They're actually hard to digest, and your body needs a break from hard-to-digest foods right now! Instead, you'll likely need to learn about foods you're not in the habit of eating. Good substitutes for gluten-filled foods included different types of rice, potatos, and corn, but also grains that are used less in the U.S. like quinoa, amaranth, and millet. You can find info about how to cook these in books, or in the recipe section here on the board.

Welcome to the board! I've found a lot of support, good information, and occasional inspiration here.

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GFinDC Veteran
GFinDC
Posted

Yep, try to make all your food from scratch using whole ingredients at first. Watch out for spice blends, single ingredient spices are generally safer.

New toaster, no sharing condiments with gluten eaters, no kissing a gluten eater until they have brushed and gurgled, no processed foods at all for a few months. Watch out for soy too, it gets some us. Check all your vitamins and meds for gluten, including oat grass and wheat grass juice.

Don't be surprised if after you have been off gluten for a while your reactions to it get stronger and more sensitive than before.

You will see people mentioning cc (cross contamination) which is celiac speak for very small amounts of gluten that get transferred to normally gluten free foods. Think of it like germs. Small so you can't see 'em but they still cause damage.

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T.H. Community Regular
T.H.
Posted

Just re: the surgery - it's a good idea to see if you can get any medication that will be needed 'post-surgery' beforehand. And it will, sadly, be up to you to stay on top of the gluten free status of them. Many pharmacies will not check if your drugs are gluten free, even if they have down that you are celiac or allergic to gluten. :o Many generics are automatically given out and are not gluten free, for example. The drug companies are not required to list non-active ingredients, so the pharmacists usually have to call the company during work hours to find the answer, and sometimes it can take a while to hear back.

A GREAT website is this: Open Original Shared Link

It is kept up by a pharmacist and lists many gluten free prescription drugs.

Truly, I would urge to you check ahead of time, and make sure you have family or friends that double check everything you are given at the hospital, drugs and food included. I had surgery just last month and had a horrible time getting gluten free pain medication. We emerged from the hospital too late for the pharmacists to contact the east coast where the drug companies were. Not ONE of the pharmacies in the entire city had the known gluten free medication of the type I needed, so it had to be ordered, but it was the weekend so it took three days before I got pain medication I needed. I would not wish that on ANYONE, truly!

re: the food. It gets easier. Slowly, but it does. I think it was easiest in the beginning when we stuck to naturally gluten free stuff, like rice, veggies, fruits, and big chunks of meat. Gluten free soy sauce helped that immensely. :D

Wishing you good, good luck!!

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      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
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