Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New To Forum Lots Of Questions


nurse93

Recommended Posts

nurse93 Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mommida Enthusiast

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.

Lisa Mentor

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.

lucia Enthusiast

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.

GFinDC Veteran

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.

T.H. Community Regular

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!!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

    2. - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Stomach burning and neuropathy

    3. - sleuth replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

    4. - Scott Adams replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

    5. - Me,Sue posted a topic in Coping with Celiac Disease
      1

      Nausea


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,836
    • Most Online (within 30 mins)
      7,748

    maegan.s
    Newest Member
    maegan.s
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • RMJ
      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.