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 Celiac.com!
    eNewsletter
    Donate

Not Sure If It's Celiac Or Not

sephiro499

Recommended Posts

sephiro499 Newbie
sephiro499
Posted

My mother told me a few days ago that my cousin was just diagnosed with Celiac and if I ever had any problem with upset stomach after eating, etc. My problem is a little weird, and very difficult to explain. These symptoms have been with me since I've been 8yo, I remember going for this test where I had to drink this white chalky substance and was put on this moving platform. They told me parents I had to eat smaller, more frequent meals. When I went to my normal primary care dr about 5 years ago he just told me to eat more.

After eating I will become more hungry than before I ate anything. Now I know that sounds ridiculous but if it isn't hunger than I don't know what it is. When I sit down to a meal I'll often only be able to eat a few bites then I'm 'full' (at least it feels like being full), and I'll be hungry in a half hour hour or so and normally finish the meal. I often crave sugar and or certain foods, like pizza. It seems like I'm never full, and I almost never gain weight (i'm male 6' 2" 180).

Now there are some foods that I know for sure will make my stomach upset, normally anything that is just whiteflour, like cup of noodles, microwave burrittos, whole wheat pasta (the worst). It seems like I don't know what to eat anymore. I've read the sugar buster book, and more recently Potatoes not Prozac. I was doing the PnP diet for awhile but then moved and moved away from it. It seemed to work for me but it wasn't enough.

Hey so if anyone has any input or maybe a similiar experience, I'd like to hear about it.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Hi and welcome to the board :)

There are so many symptoms of Celiac that it is hard to tell if what you are experiencing could be a gluten intolerance.

My thought is, since your cousin has been diagnosed with Celiac, and the disease is genetic, you should ask your doctor to run the Complete Celiac Blood Panel for you.

It is very important that you continue to eat your normal diet prior to the test. Don't be tempted to cut out or down on gluten to 'see how you feel' just yet. :D

Once all testing (if you choose to have it) is completed, regardless of the results, you could always try and go gluten-free yourself. There are people here who tested negative (through blood, biopsy or both) who have seen their symptoms inprove or disappear following a strictly gluten-free diet.

Best of luck--keep us posted!

Link to comment
Share on other sites
GFBetsy Rookie
GFBetsy
Posted

Ditto Jerseyangel's advice!

Welcome!

Link to comment
Share on other sites
carynanne Rookie
carynanne
Posted
After eating I will become more hungry than before I ate anything. It seems like I'm never full, and I almost never gain weight (i'm male 6' 2" 180).

Now there are some foods that I know for sure will make my stomach upset, normally anything that is just whiteflour, like cup of noodles, microwave burrittos, whole wheat pasta (the worst). It seems like I don't know what to eat anymore. I've read the sugar buster book, and more recently Potatoes not Prozac. I was doing the PnP diet for awhile but then moved and moved away from it. It seemed to work for me but it wasn't enough.

Hey so if anyone has any input or maybe a similiar experience, I'd like to hear about it.

I should start with: I don't know yet if I'm celiac but strongly suspect it. That said, I have at least a similar problem: I eat ALL THE TIME. I snack on anything I want, eat large amounts of fatty foods (I stay away from sugars because if I eat those, I'm STARVING half an hour later) and don't exercise (just because I've recently gotten out of the habit). I used to exercise but it never really made a difference in my weight, only my energy levels. I'm Female, 5'9" and 127#. And I cannot gain weight. Recently I've noticed that pasta makes me VERY sick the next day after I eat it. I end up with a terrible stomachache and diarrhea the next morning.

So yes, I have a similar problem. And I'm getting tested hopefully next week for celiac.

Caryn

Link to comment
Share on other sites
hannahsue01 Enthusiast
hannahsue01
Posted

I can't tell you if it is celiac related or not but I know that I have the same symptoms. The hunger thing drives me nuts as it feels like I can eat all day and still be hungry. I hate that after eating a full well balanced meal I will feel like I havn't eaten in hours after about a half an hour. I can relate. I'm with the above statements that if celiac is in your family it definently warrents a test.

Link to comment
Share on other sites
pinkpei77 Contributor
pinkpei77
Posted

im not sure if its celiac or not but im ALWAYS hungry and ALWAYS eating.

once i start ,i cant stop.

i can eat a whole meal and then 20 minutes later eat another whole meal!!!

im not sure what its from.

Link to comment
Share on other sites
sephiro499 Newbie
sephiro499
  • Author
Posted

Yeah for me with the constant eating I just try and eat something reasonable and then just ignore the hunger information going to my brain. Sometimes I'm so hungry I can't sleep, and this happens pretty often. I thought I had eaten enough during the day but it seems like I don't.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


carynanne Rookie
carynanne
Posted
Yeah for me with the constant eating I just try and eat something reasonable and then just ignore the hunger information going to my brain. Sometimes I'm so hungry I can't sleep, and this happens pretty often. I thought I had eaten enough during the day but it seems like I don't.

I just thought I'd write in and say that I just got up out of bed at 12:30 because my stomach was growling and I couldn't sleep. I guarantee you I ate a full meal for dinner...

I wonder if it's to do with malabsorption? Your body not using the calories properly because of damaged villi? Assuming we're celiac, of course. (I've already half-convinced myself I am.)

Caryn

Link to comment
Share on other sites

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. trents
      - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo the "gluten challenge" before testing but you need to understand that the...
    2. Zackery Brian
      - Zackery Brian replied to rsvtwin6's topic in Food Intolerance & Leaky Gut
      6

      Gluten and 30 other Items causing me Severe Muscle Inflamation Pain

      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease...
    3. Fluka66
      - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this...
    4. Moodiefoodie
      - Moodiefoodie replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well. I also...
    5. knitty kitty
      - knitty kitty replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet

      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,063
    • Most Online (within 30 mins)
      7,748
    Nacina
    Newest Member
    Nacina
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Waiting for urgent referral.

      By trents · Posted

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
      Gluten and 30 other Items causing me Severe Muscle Inflamation Pain

      By Zackery Brian · Posted

      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      Joint swelling when ill even on gluten-free diet

      By knitty kitty · Posted

      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
×
×
  • Create New...