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Regan

By Regan
in Coping with Celiac Disease

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Regan Newbie
Regan
Posted

Hello. I am new here. I just wanted to introduce myself so bare with me. My name is Regan and I am happily married and have two children and two step children. I have been gluten free since the middle of August. I have been sick pretty much all my life but no one ever figured out what was wrong with me. I had been diagnosed with everything from IBS< SPASTIC COLON<ULCERATIVE COLITIS>DEPRESSION>ADD>THYROID DISEASE>ETC cant tell u how much money I have

spent on DRs. I have had 5 colon surgeries and ended up with a colostomy last year due to a failed j-pouch.My husband was talkin to a co-worker telling him all about me and all the things that were wrong with me. I used to always say my life would be perfect if I didnt have to eat. Usually when I would eat, my stomach would bloat up, suffered all kinds of bowel symptoms. Hot flashes, ulcers, so much more. I couldnt lose weight no matter what I tried. (through research I fall into the obese celiac) .Well the co-worker said it sounded just like him and he had celiac. I researched it and went gluten free. And what a difference it has made right away all my symptoms cleared up. I starting losing weight and felt better than I have in over 12 years. I had surgery in October to reverse the colostomy. I am just thankful I found out the problem before my surgery. And when I had pre op labs done for the first time in 12 years ALL of my labs fell in the normal range. Thats another proof. My only problem has been eating. I hate to cook. But I am so happy to have found you guys. I have learned alot by reading the post. Hope to get to know you better. Regan

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happygirl Collaborator
happygirl
Posted

Regan,

Welcome to the board!!! We are so happy to have you here. This forum is the single handed best resource for learning about Celiac and gluten intolerance, and all that it really entails. Please feel free to ask any and all questions!!! We are happy to help and offer support.

Wow, you have had quite the story to get to where you are! One of the things that is so interesting is how gluten has been documented to affect us all so differently. However you got here, I am happy you are on the way to better health. Gluten is a crazy thing to some of us. As much as the medical field knows, there is a lot that they don't know.

I encourage you to read, read, read this board. There is so much information out there. And what you don't find by reading, post! Chime in anytime!

Good luck and let us know what we can do.

Laura

i canary Rookie
i canary
Posted

Welcome to the board Regan. Glad you found us.

lonewolf Collaborator
lonewolf
Posted

Welcome! I'm sorry you've had such a rough time of it, but glad you found some answers. Please stick around and feel free to ask questions. As for cooking, there are lots of good cooks here, so maybe you'll be inspired.

Canadian Karen Community Regular
Canadian Karen
Posted

Hi Regan! I'm glad you found us too!

You certainly have been through the ringer before finally discovering the source of your problems. Unfortunately, that is an all too familiar occurrence, as you will discover by reading posts on here. The average time from onset of symptoms to finally a proper celiac diagnosis is 11 years! Hopefully, that will soon change as celiac is brought more and more onto the radar screens of the doctors out there......

Any questions you have, don't hesitate to ask away!

Karen

kevsmom Contributor
kevsmom
Posted

Hi Regan!

I have been gluten free for 1 1/2 years. If it wasn't for this board, I could have never done it. Everyone here is so helpful. We've all been through some of the same issues, so it's a great place to come for support.

Some of the things that I've learned here I would have never thought of on my own. I have learned to check with manufacturers on products that I am not sure about, be careful with personal hygiene products like soap, shampoo and lotions, and to wash my hands after feeding the dog.

I have found that if I have any questions, someone always knows the answer, or will help me find it out.

I'm glad you took the time to introduce yourself. I know that can take a lot of courage. Good luck to you.... and keep reading. :)

Cindy

debmidge Rising Star
debmidge
Posted

Welcome to our "place." Great to have a newbie. You'll find a lot of good information and good conversation and food discussion and all those good things to help you.

One of the board members has a "newbie" packet. I think it's NINI.

Hope to see you on board again.

D.

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Nooner Newbie
Nooner
Posted

Welcome, Regan!

I'm glad you found this message board. It has helped me immensely, and I'm sure it will help you. I've been gluten free since August, and I'm still learning, too. There are lots of good, easy recipes in the cooking tips section to help you out with gluten free cooking. It's a lot easier to get excited about food and cooking when it no longer hurts to eat! :)

Li

daffadilly Apprentice
daffadilly
Posted

welcome to the group. So happy you found out your problem!!!

SchnauzerMom Rookie
SchnauzerMom
Posted

Welcome! I'm glad you decided to join us. I and my husband have been gluten free since the middle of October. Not very long but we both can tell the difference. This place has been very helpful, loads of info.

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

      By Aretaeus Cappadocia · Posted

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    • knitty kitty
      Hypoglycemia, ketones in urine and weight lost. I need advice.

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      @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!
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