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Newbie Info 101 - Start Here

Scott Adams
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Scott Adams Grand Master
Scott Adams
Posted
  • Popular Post

For those just starting out, please see this article:

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

 

  • 2 years later...
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Clari Newbie
Clari
Posted
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.

  • 6 months later...
Kim L Newbie
Kim L
Posted

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

  • 1 month later...
Debbiere Newbie
Debbiere
Posted

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

  • 1 month later...
KaileyC Newbie
KaileyC
Posted

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 Grand Master
trents
Posted

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 Grand Master
Scott Adams
Posted
  • Author

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. 

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KaileyC Newbie
KaileyC
Posted
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 Grand Master
trents
Posted

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

 

  • 9 months later...
Markyb Newbie
Markyb
Posted

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 

  • 4 months later...
CatherineWang Apprentice
CatherineWang
Posted

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 Grand Master
trents
Posted

Welcome, @CatherineWang!

  • 5 months later...
Suzyq112 Rookie
Suzyq112
Posted

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 Grand Master
trents
Posted
(edited)

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 by trents
Suzyq112 Rookie
Suzyq112
Posted

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 Grand Master
trents
Posted

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

Suzyq112 Rookie
Suzyq112
Posted

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

trents Grand Master
trents
Posted
(edited)

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 by trents
Suzyq112 Rookie
Suzyq112
Posted

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!

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      I think a UTI caused by Aspirin, made me a Celiac

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    • jimmydee
      I think a UTI caused by Aspirin, made me a Celiac

      By jimmydee · Posted

      Thank you for the information Trents!  
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    • trents
      I think a UTI caused by Aspirin, made me a Celiac

      By trents · Posted

      Welcome to the forum, @jimmydee! Celiac disease is an autoimmune disorder, meaning the consumption of gluten triggers a response by the immune system that causes the body to attack it's own tissue. Celiac disease has a genetic base that requires some kind of trigger for the genes to be turned on. We know that there are two primary genes responsible for providing the potential to develop celiac disease and we know that about 40% of the population carries one or both of these genes. However, only about 1% of the population actually develops celiac disease. So, that tells us that something more than just having the genes is necessary in order to develop celiac disease. Something must trigger those genes to wake up and produce the active disease. It's that "something" that we are struggling to understand and that is somewhat of a mystery. But there is a growing body of evidence pointing to the culprit being a disruption of the proper balance of microorganisms in the gut. Apparently, the microorganisms that live in our intestines produce chemicals that regulate the size of the openings in the mucous lining of our small bowel. A disruption in the healthy balance of this microorganic community causes an increase in the size of the openings in the mucous lining. This in turn allows protein fragments from the food we eat that are larger than normal to invade the mucous lining where they are detected as threats by the immune system. This is what is happening with gluten for those with celiac disease. The attack in the mucous lining of the small bowel by the immune system on these incompletely broken down gluten components causes inflammation and, over time, as we continue to consume gluten, it damages the mucosal lining of the small bowel which results in the loss of efficiency of nutrient absorption. This mucosal lining is made up of millions of tiny finger like projections that create an enormous surface area for the absorption of nutrients when healthy. The "wearing down" of these millions of finger-like projections due to celiac inflammation greatly reduces the surface area and thus the ability to absorb nutrients. This in turn typically results in numerous health issues that have a nutrient deficiency base. But the answer to the question of why there seems to be an epidemic of celiac disease in recent years may not be simple. It may have many facets. First, we don't know how much of this epidemic is real and how much is apparent. That is, how much of what we perceive of as a dramatic increase in the incidence of celiac disease is simply due to greater awareness and better detection methods? Celiac disease is not new. There is evidence from ancient writings that people suffered from it back then but they did not have a name for it. And it wasn't until WW2 that gluten was identified as the cause of celiac disease. Current thinking on what is causing imbalance in gut biology has put forth a number of causes including overuse of antibiotics and pesticides, environmental toxins, fluoridation of drinking water, preoccupation with hygiene and sanitation, and the western diet. https://www.celiac.com/celiac-disease/theories-on-the-growing-prevalence-of-celiac-disease-and-gluten-sensitivity-over-the-last-half-century-video-r6716/?tab=comments#comment-25345 All this to say that I doubt your UTI or the low dose aspirin had anything to do with the onset of your celiac disease. It was probably just coincidence unless the UTI was the stress trigger that activated the celiac potential genes. The onset of celiac disease an happen at any stage of life and many people report it following a period of illness. But what is interesting about your low dose aspirin theory is that aspirin is in a class of medications known as NSAIDs (Non Steroidal Anti Inflammatory Drugs). Scientific studies have shown that long term use of NSAIDs can damage the villous lining of the small bowel in the same way as celiac disease.  The other thing I wish to point out is that unless you have actual testing done for celiac disease, you can't be sure if you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms, the difference being that NCGS doesn't damage the lining of the small bowel. There is no test for NCGS, celiac disease must first be ruled out. NCGS is 10x more common than celiac disease. The antidote for both is a gluten free diet.
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