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

Do I Have This Disease?


Dove

Recommended Posts

Dove Newbie

Hi. I know you all aren't doctors, and I do have an appt. to see a gastroenterologist in a week, but I'd like to hear what you think. I have had abdominal trouble for years, which was always attributed to Irritable Bowel Syndrome. I even had both Upper and Lower GIs done 2 years ago, which came back normal. But nothing ever stops the pain and bloating. Recently, I have had another strange thing happening...(sorry about being so descriptive)...which is oily diarrhea and gas. Sometimes I feel the horrible cramping, but when I visit the toilet all that comes out is gurgling gas. Then afterwards I notice that there are pools of yellowish oil floating on the water. I usually have diarrhea, but sometimes constipation. But the worst thing is the cramping. It doesn't seem to get any better after a stool, either. You'd think that would relieve it, but it doesn't. As far as the other symptoms of celiac disease, I do have a lot of body aches and am tired all the time, but this was always attributed to Fibromyalgia. (I think "Fibromyalgia" is just another word for, "We don't know what's wrong with you".) The one thing is DON'T have is weight loss. I am about 40 pounds overweight, and have a very hard time losing it. This makes me think it may not be celiac disease. Also, wheat products bother me a lot - especially whole wheat, as do oats. But other things bother me too, such as nuts, carrots and spinach. What do you think?


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



Celiac.com Sponsor (A8-M):



Canadian Karen Community Regular

Sounds like classic celiac to me...... Make sure you stay on gluten though until all the testing is complete......

Oh, and by the way, Welcome to the Board!!!!

Karen

KaitiUSA Enthusiast

Sounds like it could be celiac. You should get a full celiac panel done to check for it.The following is the panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Everyone has different symptoms and there are over 200 symptoms-you do not have to have any symptoms at all. Some people gain weight instead of lose it too.

Alot of doctors are not up to speed on things with celiac.

Welcome to the board-this is a wonderful site...we have people on here who are very knowledgable and are very supportive.

nettiebeads Apprentice
Hi.  I know you all aren't doctors, and I do have an appt. to see a ..(sorry about being so descriptive)...which is oily diarrhea and gas.  Sometimes I feel the horrible cramping, but when I visit the toilet all that comes out is gurgling gas.  Then afterwards I notice that there are pools of yellowish oil floating on the water.  I usually have diarrhea, but sometimes constipation.  But the worst thing is the cramping.  It doesn't seem to get any better after a stool, either.  You'd think that would relieve it, but it doesn't.  As far as the other symptoms of celiac disease, I do have a lot of body aches and am tired all the time, but this was always attributed to Fibromyalgia.  (I think "Fibromyalgia" is just another word for, "We don't know what's wrong with you".)  The one thing is DON'T have is weight loss.  I am about 40 pounds overweight, and have a very hard time losing it.  This makes me think it may not be celiac disease.  Also, wheat products bother me a lot - especially whole wheat, as do oats.  But other things bother me too, such as nuts, carrots and spinach.  What do you think?

<{POST_SNAPBACK}>

Yep, that was me nine years ago. Except for the 40 lbs overweight, which happened to me later after my 3rd divorce, but that's another story. And don't worry about being descriptive, we've read and/or posted it all. We're here to help. And the tiredness is very common when you have celiac disease. I mean, not the lack of sleep tired but swimming upstream in a molasses river in January total exhaustion fatigue. Although a classic symptom of celiac disease is unexplained weight loss, that doesn't mean you can't be overweight too. I was and still am, only more so now. And the problems you have with other foods may be because of damage to the small intestine. After going gluten-free, it should show signs of improvement as it heals. The problem I found with celiac disease is that because there isn't a way to help us with pharmocology of one sort or another it is almost like an "orphan" disease. But going gluten-free isn't the worse thing in life. Keep us posted!

Canadian Karen Community Regular
I mean, not the lack of sleep tired but swimming upstream in a molasses river in January total exhaustion fatigue. 

<{POST_SNAPBACK}>

Nettiebeads,

I love your description of the exhaustion we feel!!!! LOL! :lol:

Karen

nettiebeads Apprentice
Nettiebeads,

I love your description of the exhaustion we feel!!!! LOL! :lol:

Karen

<{POST_SNAPBACK}>

Well, every now and then I let my southerness out. Glad you liked it.

KaitiUSA Enthusiast

This is a post by Lisa Baker that was sent to the moderators by accident:

WELCOME TO THE CLUB! I was diog. with a poss. biopsy about three weeks ago and I have had and still do, have the same exact symptoms that you do. I NEVER get too far from a bathroom and the warning bell is a short one.

Take advantage of all the informed peps on this site to help guide you and it will give you some satisfaction that you are not alone -- truely, others share your "pain".

Everyone here can work you through your frustration and you get to know who knows best about a certain subject. Keep checking in and read the posts, go to the forums and choose a subject. Learn-learn-learn. You are your best Dr. because you know your body more than anyone.

(but don't forego the MD"S - inform them)

Keep the faith and as someone told me, "be grateful, Celiac Disease does not controll your life, you controll Celiac." The power is within.

Lisa B.

(just noticed, I have THREE squares....whoah)


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



Celiac.com Sponsor (A8-M):



Dove Newbie

Thanks a lot. That panel you mentioned...do I need to ask the doctor specifically to do those tests, or will he automatically do all that based on my symptoms?

Wanda

Dove Newbie

Also, one more thing...I read something about a Selective Carbohydrate diet. (Was that what it was called?) Have any of you tried this? If so, is it hard to stay on? It seems so detailed and difficult. Is it necessary to be that drastic, or does just cutting out the gluten do the trick?

Wanda

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,158
    • Most Online (within 30 mins)
      7,748

    MollyK
    Newest Member
    MollyK
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.