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1 Week And My Life Has Change


meme2kids

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meme2kids Rookie

Last Friday, my Family Doctor after being worried about my lab work, sent back samples to test fof Malabsorbtion issues. Last Friday she called me and said I tested positive for some call Celiac and I would be getting a call with my appointment information.

Yesterday: I had my consulation with the GI, he asked some questions, poked on my tummy and asked what I had had to eat.....told him and he said great. He said I had a positive blood test for Celiac, all my symptoms could be caused by Celiacs, the good news it that if it is Celiacs, a drastic life change in my diet would be the treatment. He said that he would perfer to complete a biospy to confirm, before he gave a diagnosis. He said, I was lucky, and lead me to the his asst and together they talked me though the process for the biospy.

Today: I was at the surgery center at 8am, was out by 11. My positive blood test, went from possibly Celiacs, to probally. The Doctor told my husband he was able to see damage during the endoscopy, but would still like to review the slides and speak to us on Monday.

Totaly ate all my favorite foods today, I know I can have these foods in modification form, but it will the last time i can walk in to a resturant just order whatever looks good with out research before hand or speaking to the staff.

Tomorrow: Day 1 of my new life. Start Gluten Free tomorrow morning. Breakfast and lunch for tommorrow have already been purchased, tonight I've made menus of food to cook and take to work. With my work schedule and commute, I generally eat breakfast and lunch at fast food.

Any advise for on going treatment? I know the diet change, but what about exercise? What about family members? Kids testing is getting started with thier peditrians.

Thanks for listenting, just sorta shell shocked, 7 days from What is Celiac to you have visible damage and need to go Gluten Free diet for life.


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justjen Rookie

Good Luck! While I don't have Celiac (still waiting on my blood test to come back) I to have a bad Gluten Intolerance so I know what I shock it is to have to suddenly change your whole way of eating.

Because with this, its not like you can just have a "little" gluten.

Jestgar Rising Star

Welcome to day 1. :)

It really does get easier. Ask any questions you have and feel free to vent frustrations.

okieinalaska Apprentice

Welcome, I am day on 8 myself. Just had my positive endo last week. I have the same questions as you. My GI doc told me to talk to my kids pediatricians about if he thinks they should be tested.

Figuring out what to eat is getting easier but right now we are mostly eating different things. Except for pasta, we found one my kids can't tell the difference on. I think it's Sam Mills corn pasta...

T.H. Community Regular

welcome to the beginning of feeling better. :-)

It's scary, it can be kind of crummy at first, but when you start feeling better, it's pretty amazing in a good way.

Family members - yeah, I'd encourage every relative you have to get tested, frankly. Admittedly, that's just me, but this was my family experience:

My father was diagnosed by accident. Doctor never recommended testing anyone else, so we didn't.

8 years later, I tested positive, because I asked for the test. Turns out, I've probably had this for over 20 years. Permanent damage has been done at this point.

After a little research, we recommended everyone get tested. My brother and daughter came back positive. My son was negative, but had symptoms that resolved on a gluten-free diet (we went gluten-free as a family)

Talking with family members, we seem like a likely bunch for the disease. I have numerous cousins whose children are all suffering from odd physical problems, constant stomach pain, growth issues, organs 'giving out' too early, depression issues.

Many of them were going to get tested, but had no insurance and so stopped the process. It's a shame, because a number of their kids still complain about daily stomach aches, and they won't even consider stopping gluten, at the very least, if they can't afford the tests. Really, really a shame.

Exercise - I would take it one step at a time. Some people go through gluten withdrawal, where they crave it, they feel fuzzy headed, etc.. Some people will feel starvingly hungry for a few weeks/couple months (that was me) as their body craves the nutrients it's not quite healed enough to absorb yet. Shopping and learning to cook in new ways has a definite learning curve - it'll take a while to get the hang of things. But once you get over the 'hump,' it gets much easier.

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    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
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      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
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      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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