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Just Diagnosed

Genice

By Genice
in Coping with Celiac Disease

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Genice Newbie
Genice
Posted

I have just been diagnosed, and will see the dietitian on wed 4-26.I just wanted to know what to expect. Thank you.

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Lisa Mentor
Lisa
Posted

Welcome to the world of celiac!

The next month or two will be your hardest. You need to cram in as much information on the diet as you can absorb. I would suggest reading as many posts here are you are able and that will get you off to a great start.

This diet is not that difficult, once you know what to look for.

The people here have been so wonderful in guideing me though Celiac Disease and I don't know what I would have done without everyone here.

First, start asking questions (there are no dumb question). How can we be of help.

Lisa

Genice Newbie
Genice
Posted
  • Author

Welcome to the world of celiac!

The next month or two will be your hardest. You need to cram in as much information on the diet as you can absorb. I would suggest reading as many posts here are you are able and that will get you off to a great start.

This diet is not that difficult, once you know what to look for.

The people here have been so wonderful in guideing me though Celiac Disease and I don't know what I would have done without everyone here.

First, start asking questions (there are no dumb question). How can we be of help.

Lisa

Thank you Lisa, this is alot to take in, I did not know that shampoo and some other things I use on my outside would be bad.I have alot to learn.

Lisa Mentor
Lisa
Posted

Just of few things to get you started...This is what I use and is gluten free:

Dove Shampoo

Dove Soap

Burts Bees lip stick and gloss

La Choy Soy Sauce

McCorrmicks Vanila

Most of Paul Newman's Salad Dressings

Most Mayos

Heinz Katchup

All of Kraft Products will indicate ...etc.

It's alot to learn, but you can do it. And it really gets ALOT easier.

I just remember someone here offer a Celiac Starter Packet for newbies...Annette perhaps?

Don't worry, she'll post in.

Genice Newbie
Genice
Posted
  • Author

Thanks again, Good thing that is the shampoo and soap I use.

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    • Aretaeus Cappadocia
      Hypoglycemia, ketones in urine and weight lost. I need advice.

      By Aretaeus Cappadocia · Posted

      Your post doesn't mention if you are seeing Doctors about this and what they had to say, or if you are just trying to manage it by yourself. If you aren't getting medical support, that is the first place to go. On the other hand, if you've been on a diagnostic odyssey with Dr after Dr being perplexed, consider getting your genome sequenced (search for "whole genome sequencing"). It's not guaranteed to get you an answer, but if your symptoms are caused by a genetic condition you might get the answer that is stumping standard differential diagnosis. These days there are quite a few companies offering this service. I wish I could tell you which one was best but I've been out of that field for a decade. Talk to your Dr about this and see what they think. Price is probably ~$500-$1,500 including the sequencing and detailed reports. Sounds like a lot, I know, but consider that 25 years ago just the sequencing (no reports) cost $2.7 B and took 3 years to complete.
    • knitty kitty
      Hypoglycemia, ketones in urine and weight lost. I need advice.

      By knitty kitty · Posted

      @yellowstone, You poor thing!  I'm not a medical doctor, but it sounds like "Refeeding Syndrome".   I suggest you seek medical attention.   Refeeding Syndrome occurs when your body doesn't have enough of the necessary vitamins, especially Thiamine, to turn sugars (from the fruit, juice, and honey) to turn provide energy.   This can occur in Malabsorption due to Celiac Disease.  Malabsorption prevents the absorption of B vitamins, especially Thiamine. The B vitamins and Thiamine cannot be stored long in the body.  When you run out of Thiamine, your body burns fat for energy which produces the Ketones, hence your weight loss. With medical attention, Thiamine and other B vitamins need to be replaced before giving any more sugars.  Doctors can give you an IV containing B vitamins including Thiamine, called a "banana bag".  Riboflavin  Vitamin B2 causes the yellow color.   Doctors can also monitor your electrolytes which can become unbalanced and cause further serious health issues. I've experienced Refeeding Syndrome.  It's very scary.  Health can deteriorate quickly in Refeeding Syndrome.  It's correctable, but complicated.   I strongly urge you to get professional medical attention as soon as possible.   Our prayers are with you! https://my.clevelandclinic.org/health/diseases/23228-refeeding-syndrome Thiamine Deficiency in Self-Induced Refeeding Syndrome, an Undetected and Potentially Lethal Condition https://pmc.ncbi.nlm.nih.gov/articles/PMC4295429/ Keep us posted on your progress!
    • Sheila G.
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      By Sheila G. · Posted

      Thank you for sending me this information 🙏🏻❤️✌️
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      By yellowstone · Posted

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