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 Here!


Regan

Recommended Posts

Regan Newbie

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


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

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

Welcome to the board Regan. Glad you found us.

lonewolf Collaborator

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

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

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

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.


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



Celiac.com Sponsor (A8-M):



Nooner Newbie

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

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

SchnauzerMom Rookie

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.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,606
    • Most Online (within 30 mins)
      7,748

    TGreen
    Newest Member
    TGreen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • 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.