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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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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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