Newbie Info 101 - Start Here

[Scott Adams]

For those just starting out, please see this article:

And this post, which is rather old, but mostly still useful:

 

[Clari]

On 3/14/2019 at 12:01 PM, Scott Adams said:

For those just starting out, please see this article:

And this post, which is rather old, but mostly still useful:

 

Thank you, having my biopsy tomorrow morning.

[Kim L]

Thank you Scott,

This has given me so much more insight and information than I have ever been given.  I have been researching and looking for answers for a few years now.  I will see my Gastroenterologist tomorrow for confirmation of exactly what I have and game plan and this will help arm me with the right questions to ask him and better yet how I can be my best advocate.  Thank you, so glad I found this group!

Kim

[Debbiere]

Thank you so much for these resources. I had problems when I was 5, and finally I know what is happening with me

[KaileyC]

Thank you for this. I am 21 years old and just now diagnosed with Celiac disease, had no idea this was something I had and am so scared to find out so late. I see all of this research online saying that a late diagnosis means a greater chance of other autoimmune disorders and it scares me. Is there anyone else out there who is new to this and was diagnosed as an adult?

[trents]

Welcome to the forum, KileyC!

Let me assure you, the vast majority of celiacs have been diagnosed as adults and most of them are considerably older than your are. I think it takes a10 years on the average to get a diagnosis after the onset of symptoms. For me, it was 13 years. I was diagnosed at about age 50 and I'm 71 now.

I would guess the average age of diagnosis as well as the average length of time between onset and diagnosis has decreased in the past 20 or so years, both because of more awareness of the condition and improved tools for diagnosis. But there is still a troubling amount of ignorance in the medical community with regard to gluten disorders.

You are still very young and your physical resilience as a 21 year old should allow you good healing if you go all in on avoiding gluten. And learning to eat truly gluten free as opposed to just eating lower gluten will be your biggest challenge. The other big challenge is navigating the social impact of needing to eat gluten free. You will likely find that some friends and family will be dismissive.

This might help you to get a jump start in learning to eat truly gluten free:

Just take one thing at a time and don't worry about the future when it comes to developing other autoimmune diseases. And the fact is, autoimmune diseases are more likely to come with aging, whether or not due to celiac disease.

[Scott Adams]

I agree with everything @trents said, and only want to mention that the risks of developing many of the associated conditions that may come with undiagnosed celiac disease decrease greatly once you are on a 100% gluten-free diet. 

[KaileyC]

8 hours ago, Scott Adams said:

I agree with everything @trents said, and only want to mention that the risks of developing many of the associated conditions that may come with undiagnosed celiac disease decrease greatly once you are on a 100% gluten-free diet. 

Thanks so much, this definitely gives me some assurance and better insight into what to expect with celiac disease. It's all a lot of overwhelming information to learn at first but I think knowing that it is possible to treat with a completely gluten-free diet puts me more at ease and it's best to take everything one step at a time. I greatly appreciate your responses @trents @Scott Adams

[trents]

KaileyC, this might be helpful to you: https://vimeo.com/486284734

 

[Markyb]

Thanks Scott very helpful completely new to this had no idea I had celiac disease until last week an acupuncturist told me after living in very bad pain in my chest and stomach and even developed Tourette’s syndrome doctors had no answers for me for 5 years just kept throwing medication at me that never worked after one week I can already tell this is the cure to my problems 

[CatherineWang]

Hello everyone, I'm thrilled to join this supportive community dedicated to navigating life with Celiac Disease. My name is Catherine Wang, and I wanted to take a moment to introduce myself and share a bit about my journey with this condition. Several years ago, I received the life-changing diagnosis of Celiac Disease. Like many of you, I experienced a mix of emotions – confusion, frustration, and perhaps even a sense of relief at finally having answers to my unexplained symptoms. Through this forum, I hope to offer support, encouragement, and practical tips for navigating life with Celiac Disease. I look forward to connecting with each of you, sharing our stories, and building a community of understanding and empowerment.
Thank you for welcoming me into this space, and I'm eager to embark on this journey together.

[trents]

Welcome, @CatherineWang!

[Suzyq112]

Hey guys! So I just recently got diagnosed and am a type 1 juvenile diabetic. I have been having various issues for years..extreme tummy distention,  stomach problems, the elbow rashes, super fatigue, muscle and joint pain, neurological memory issues, hand and foot swelling, skin sensitivity to touch, funny though as I've had weight gain from being sedentary and in bed a lot. 

Hoping ALL of this will go away. It has been really hard with the diabetes as I'm  a super slow healer. Any others had the norm symptoms and some unusual ones like these? I even have trouble walking and taking stairs at times due to muscle pain and feeling weak. 

Thx! Hope I posted to the right place to ask! 😊

[trents]

Welcome to the forum, @Suzyq112!

Many or most of the symptoms you describe are not unusual in the celiac community. There is this misconception out there that celiac disease only produces GI symptoms but we now have identified over 200 medical conditions and symptoms associated with celiac disease. Many doctors are still in the dark about this, however.

Some of the symptoms you describe should improve significantly with a truly dedicated gluten free diet. You also need to take seriously the importance of putting yourself on some high potency vitamin and mineral supplements that are gluten free. B12, B-Complex, Magnesium glycinate or Magnesium citrate (not mag oxide), 5-10k IU of D3 daily, and zinc. Costco is a good place to procure them.

Edited August 11 by trents

[Suzyq112]

Thank you treats! I saw Ollie gummie vitamins and immunity support elderberry gummies are gluten free and have been taking those. I will look into the ones you mentioned as well. Thank you for the Costco tip. I'm praying the symptoms will all go away. I've read some people have long term problems even after being on the gluten free diet, but I pray that's not the case. I can't wait to feel healthier!! 🤞

Meant trents above. Auto populate got me again! 

[trents]

An ordinary adult multi vitamin is not a high potency supplement so I think you need something stronger than gummies.

[Suzyq112]

Ok. Thx! I see my endos dietician soon too and look into high potency. 

[trents]

Celiac disease damages the villous lining of the small bowel. This is the area of the intestinal track where all of our nutrition is absorbed. Long term, undiagnosed celiac disease invariably results in vitamin and mineral deficiencies. It typically takes two years or longer after going gluten free to experience full healing of the small bowel lining so that the efficiency of nutrient absorption is restored. High potency vitamin and mineral supplements can offset this inefficiency during the healing process.

Edited August 12 by trents

[Suzyq112]

I'm hoping with my type 1 diabetes it hasn't done too much damage and I can hopefully follow a somewhat normal healing time. I heal so slowly. Thx for the info. Ive been trying to read a bunch as well. I stryggle with kidney disease too. Excited for hopefully getting some energy back! 🤞

Thx!