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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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    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
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