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

Newly Diagnosed

Bastet

Recommended Posts

Bastet Newbie
Bastet
Posted

I am so glad I found this forum! I have been reading for about a week or so and finally joined.

I was diagnosed with Celiac disease on May 12. I am a little confused.

I have always had a "bad" stomach. Years ago I was diagnosed with gastritis found during an edoscopy. I learned to avoid things that gave me a stomach ache and got along pretty well. The weird thing is that my "go to" foods during attacks were plain pasta and white bread. I never noticed any symptoms from eating those things.

Fast forward to the end of January 2009.... I had a horrible stomach attack. The pain was intense, but got better after vomiting. The odd thing was that I threw up food that I had eaten the day before. I was actually crying and moaning from the pain at my Doc's office. He sent me to the emergency room. They found nothing wrong and sent me home after some morphine. I figured it was a fluke and went on with my life.

A month later...another attack with the pain and vomiting plus diarrhea. I did not bother with the emergency room this time. I just went to my regular Doc the next day. He referred me to a GI Doc. He set me up to have an EGD and colonoscopy right away. I am a cancer survivor. I was sure the tests would show radiation damage or something. Nope! Everything was good except my small intestine. The biopsy showed Celiac disease.

I have been on the Gluten free diet ever since (after one last binge at Applebee's on May 12). Anyway, I don't feel much different on the gluten-free diet. My husband says my anxiety has gotten much better. Who knew that my horrible anxiety could be caused by something like gluten?

Anyway...my question is after typing up a book (sorry)....do my symptoms sound lilke celiac disease? Could my Doc be wrong? I have eaten pasta and bread all my life without noticing anything.

Thanks to any and all who take the time to read my post and respond.

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted
Anyway...my question is after typing up a book (sorry)....do my symptoms sound lilke celiac disease? Could my Doc be wrong? I have eaten pasta and bread all my life without noticing anything.

Thanks to any and all who take the time to read my post and respond.

Symptoms vary, but endoscopic biopsy is the gold standard of Celiac Diagnosis. If you have eaten gluten your whole life it stands to reason that it will take time for your body to heal. I'm just over a few months gluten-free after nearly 44 years of gluten. I see some improvement, but not much yet...the bloating has improved. About 3 weeks to a month in I became very frustrated but read many posts that indicated the younger the person at diagnosis the quicker the recovery...I'm still hopeful for more improvement as the weeks go on.

Here is a great youtube of a video produced at UCSD's Celiac Center. It is long (over an hour) but helpful.

Open Original Shared Link

Welcome!

FMcGee Explorer
FMcGee
Posted

I've only been gluten-free four days longer than you (I also had the blood test and endoscopy come back positive) and don't feel miraculously better overnight, either. A lot of people do, according to what they've posted on the internet, but I don't. I, too, have felt my anxiety decrease, and the bloating has gone down a little bit, but I'm waiting for that energy bounce-back and for my stomach to quit being annoying. Yesterday I resolved to be patient; this is easier said than done. Keep in touch, and here's hoping we both get that recovery we keep hearing about soon!

ang1e0251 Contributor
ang1e0251
Posted

Remember each person's symptoms are unique. Don't expect there to be a certain set of symptoms that everyone should have identically. That's why so many of us go years without dx, our dr's think each person with celiac disease should look and act the same. Some have no symptoms but still are having their insides waste away.

You do have some symptoms and those are your indicators. You may retain those same ones over time or become more sensitive and have other feelings. This disease just isn't cut and dry.

As far as the energy boost, you could try the sublingual B12. It really boosted my energy and brain power too.

Bastet Newbie
Bastet
Posted
  • Author

Thank you for the input everyone. It is nice to not feel alone as this disease seems to be somewhat isolating. It's one of those things you have to experience (either yourself or a loved one) to appreciate. If I am honest with myself, this diagnosis does seem to answer long-standing questions about GI issues, anxiety, and brain fog that I have experienced for years.

Tra cy Newbie
Tra cy
Posted
Thank you for the input everyone. It is nice to not feel alone as this disease seems to be somewhat isolating. It's one of those things you have to experience (either yourself or a loved one) to appreciate. If I am honest with myself, this diagnosis does seem to answer long-standing questions about GI issues, anxiety, and brain fog that I have experienced for years.

Well said...bloating and brain fog!!! 4 weeks gluten-free and 3 episodes. I am assuming I am still learning to watch ingredients carefully.

It is not worth taking chances because I loose a whole day.

Tra cy

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748
    Lunaluv
    Newest Member
    Lunaluv
    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
      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.
×
×
  • 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.