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
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.

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

Celiac.com Sponsor (A8-M):


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.

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.

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.

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.

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!!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.