Jump to content
  • 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):

Have You Felt Any Of These Symptoms?


Danondan

Recommended Posts

Danondan Newbie

Hey everybody,

Excuse any possible typos, as this is written on an iPhone. So let me get to the point before my hands start to cramp...

I have had a combination of symptoms that have alluded doctors. I have done tests (that show up normal for the most part) and they get chalked up to IBS...but I highly doubt that's the case...

Every month or two, I wake up with a very strange headache, front of head and temples. I have sunken in eyes, fatigue and the inevitable VERY watery stool. my stomsch is bloated, and noisy. Thesesymptoms come on as rabidly as they come off, within a few days everything is normal again. I don't know if anything triggers it---but during these times I stop eating gluten ---and it either woke or not (I don't know --cuz you know, rapidity.)

Is this something ANYONE has experienced? Most web-searches have suggested celiac. The sunken eyes-headache (dull not throbby) and watery stool combo patter is what concerns me. all three of those are associated with IBS---but whatever is causing this, is causing them all at the same time.

Any help is greatly appreciated.

Also, TMI, the watery stools have a "smokey" smell, not a --- how do you say --- human? Smell? As if not much digestive work was goin on in the process, perhaps


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



Celiac.com Sponsor (A8-M):



gatita Enthusiast

I do have the same kind of D and yeah, that smokey smell lol...

Have you been tested for celiac? Or tried going gluten free for a few weeks or more?

ravenwoodglass Mentor

If you haven't been tested for celiac you should do so. However you have to be eating gluten regularly for the tests to have a chance at being accurate. Even a short time gluten free can throw them off and some folks will have a false negative even when they have never been gluten free.

After all celiac related testing is finished give the diet a good strict try for at least a couple of months.

GottaSki Mentor

If you haven't been tested for celiac you should do so. However you have to be eating gluten regularly for the tests to have a chance at being accurate. Even a short time gluten free can throw them off and some folks will have a false negative even when they have never been gluten free.

After all celiac related testing is finished give the diet a good strict try for at least a couple of months.

I agree - you should definitely get tested. Don't remove gluten until you've completed celiac testing. People often regret trying the diet first, because they lose their best chance for diagnosis. Once testing is complete, remove ALL gluten for at least three months.

You primary doctor can order the full celiac blood panel for you to start the process.

Good Luck :)

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,084
    • Most Online (within 30 mins)
      10,442

    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...