Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 To The Forum

RSE8

By RSE8
in Coping with Celiac Disease

Recommended Posts

RSE8 Newbie
RSE8
Posted

Hi...I'm a 35 year old male, recently diagnosed with celiac's....well, they think. I should start from the beginning. October 2006 I went on a family vacation to Disney World for 10 days. On the second day, I started having horrible stomach pains. I tried to suck it up because we were at one of the parks and I didn't want to ruin everyones time but I couldn't and pretty much ended up on a bathroom floor rolled up in a ball it hurt so bad. My brother took me to the Emergency Room. After spending hours there, the doctor came in and told me I have diverticulitis. They would admit me for IV antibiotics. So, I spent 5 days in the hospital. When they let me out, I was feeling better. Still a little tender in the stomach, but not too bad. November 2006 I started having the pains again. Not as bad as Florida but close. I went to the ER at the hospital I work at. They admitted me for Diverticulitis for 7 days. They sent me home taking cipro and flagyl and dilauded for pain. I got into a gastroenterologist who did a cholonoscopy and a sigmoidoscopy. She told me there was nothing wrong with me. Yet, I was still on the antibiotics and pain meds. I found another gastroenterologist. He had me quit taking the antibiotics (I was on them for months). He did another colonoscopy and sigmoidoscopy. In the mean time, my stomach would be alright for a couple weeks then start hurting again. This doctor told me he thinks I may have Chron's. Put me on some medicine for it. October of 07 I was visiting family around Pittsburgh and started with the stomach pains again. I went to the ER there and they said it was diverticulitis. Gave me more antibiotics and pain meds. I refused to take the pain meds because I was scared of getting addicted....When I went off the dilauded after taking it for months, I went thru withdrawals that were horrible. So I went back to the doctor who did a small bowel endoscopy. They called a couple weeks ago and said they THINK I have Celiac Disease....I am so sick of them not knowing what it is....there is something going on and I just want to get it better. My stomach hasn't been too bad since maybe right before Xmas. Then this past week it started bothering me again....most of the time it just feels like there is a lot of pressure in it....then other times I get sharp pains. I thought I'd start the glutoen free diet this week...well, I wasn't prepared. I went to the grocery store and pretty much just walked up and down the isles for what seemed like forever....not knowing what i could get or what I am able to eat. I am just frustrated and sorry for rambling on but I honestly don't think I have Celiac's but I just don't know where to turn for help anymore. I don't know....Thank you for listening and any advice you can give me would be great.

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

Celiac.com Sponsor (A8-M):


Electra Enthusiast
Electra
Posted
Hi...I'm a 35 year old male, recently diagnosed with celiac's....well, they think. I should start from the beginning. October 2006 I went on a family vacation to Disney World for 10 days. On the second day, I started having horrible stomach pains. I tried to suck it up because we were at one of the parks and I didn't want to ruin everyones time but I couldn't and pretty much ended up on a bathroom floor rolled up in a ball it hurt so bad. My brother took me to the Emergency Room. After spending hours there, the doctor came in and told me I have diverticulitis. They would admit me for IV antibiotics. So, I spent 5 days in the hospital. When they let me out, I was feeling better. Still a little tender in the stomach, but not too bad. November 2006 I started having the pains again. Not as bad as Florida but close. I went to the ER at the hospital I work at. They admitted me for Diverticulitis for 7 days. They sent me home taking cipro and flagyl and dilauded for pain. I got into a gastroenterologist who did a cholonoscopy and a sigmoidoscopy. She told me there was nothing wrong with me. Yet, I was still on the antibiotics and pain meds. I found another gastroenterologist. He had me quit taking the antibiotics (I was on them for months). He did another colonoscopy and sigmoidoscopy. In the mean time, my stomach would be alright for a couple weeks then start hurting again. This doctor told me he thinks I may have Chron's. Put me on some medicine for it. October of 07 I was visiting family around Pittsburgh and started with the stomach pains again. I went to the ER there and they said it was diverticulitis. Gave me more antibiotics and pain meds. I refused to take the pain meds because I was scared of getting addicted....When I went off the dilauded after taking it for months, I went thru withdrawals that were horrible. So I went back to the doctor who did a small bowel endoscopy. They called a couple weeks ago and said they THINK I have Celiac Disease....I am so sick of them not knowing what it is....there is something going on and I just want to get it better. My stomach hasn't been too bad since maybe right before Xmas. Then this past week it started bothering me again....most of the time it just feels like there is a lot of pressure in it....then other times I get sharp pains. I thought I'd start the glutoen free diet this week...well, I wasn't prepared. I went to the grocery store and pretty much just walked up and down the isles for what seemed like forever....not knowing what i could get or what I am able to eat. I am just frustrated and sorry for rambling on but I honestly don't think I have Celiac's but I just don't know where to turn for help anymore. I don't know....Thank you for listening and any advice you can give me would be great.

If they think you have Celiac they should be trying to get you in for a biopsy very soon. If that is the case you may not want to stop eating gluten because you may heal up before the biopsy.

I had pain constantly before I was diagnosed with Celiac and I also was diagnosed with diverticulitis, and the pains I used to have are completely gone and I haven't had any of the diverticulitis symptoms since I've gone gluten free. I personally think I only had diveriticulitis symptoms because celiac was irritating my entire system and everything was getting weak.

I was also rushed to the ER once after purposely infecting myself with gluten because I had a nurve test coming up and I wanted to initiate symptoms, and those pains were so much different. I was doubled over in pain!! They couldn't find a diagnosis or cause, but the dr. said he thought it was ulsers which I don't buy because I've never had a problem with them before and I just know it was from the crackers I ate. The ER dr. also said if I did have celiac one cracker could initiate pains like that, so I'm now sure that's what it was.

Good Luck and I hope you get some answers soon!!

RSE8 Newbie
RSE8
Posted
  • Author

Thanks for the reply....I think that is why I am confused, they did biopsies and they came up showing everything was good. I just think he is grabbing at straws.

Guest j_mommy
Guest j_mommy
Posted

Hello!!

Did they do the blood tests too???? Maybe that would help clarify if they are questionisng the results of your biopsy.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,367
    • Most Online (within 30 mins)
      7,748
    Brianman
    Newest Member
    Brianman
    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
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...