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):

No Digestive Symptoms...could It Still Be Celiac?

artzombie

Recommended Posts

artzombie Newbie
artzombie
Posted

A friend who has celiac suggested that I look into whether or not I have celiac. My #1 symptom is profound fatigue. It is not constant, but is bad enough that I have not worked full time in 3 years. I dismissed the idea of celiac but a few recent developments have me reconsidering. I want to cover all my bases, especially if this can spawn long-term side effects. Here's my situation:

 

I am a 57 year old woman. I have rarely had digestive issues in my life...certainly nothing chronic. No diarrhea or constipation. My only digestive annoyance is that I seem to belch more than most people.

 

I have assumed that the primary cause of my fatigue is what is called "persistent cancer-related fatigue". I went through chemo for breast cancer 3 years ago and my energy never returned completely. Up to 1/3 of BC patients have ongoing fatigue for 5-10 years after treatment. However, my oncology team dismisses that notion and says I'm the only patient they have ever had who still suffers from fatigue this long out of treatment. None of my friends with BC have had fatigue this bad for this long.

 

I am on anti-estrogen therapy to prevent a cancer recurrence. This can also cause fatigue, in some cases, "extreme" fatigue.

 

I have sleep apnea; the severity is borderline for needing CPAP but I insisted on it in order to eliminate any causes of fatigue. So theoretically at least, sleep apnea is no longer an issue.

 

5 months after chemo I was diagnosed with pernicious anemia, which also causes fatigue. I have B12 shots monthly or even more frequently (my husband gives me the shots so I can have them on demand) plus I take two 1gm B12 sublinguals, iron, and folic acid every day. Theoretically, B12 deficiency is no longer an issue.

 

I live a generally healthy lifestyle, eat well, exercise despite the fatigue, manage stress. Blood tests are all normal, including thyroid and autoimmune panels.

 

I am not depressed...my mood is fine when I'm not profoundly fatigued, when I am, I am more frustrated than depressed. Nonetheless, I am on wellbutrin because it is helpful for cancer-related fatigue.
 

As recently as last September, I tracked my diet (wheat, dairy, sugar, alcohol) to see if there was any correlation with my symptoms. There was not.

 

The reason I even consider celiac now is because of these recent developments:

 

A weight loss of 5 pounds...over the holidays, when we had richer and sweeter food than normal around, and I have slacked on exercise.

 

A mild but itchy rash on my buttocks, with no obvious cause.

 

I was experiencing my normal level of fatigue...tiring easily but not debilitated...until Monday and Tuesday of this week. I had 1/2 of a bagel before bed on Sunday night, and made pasta for dinner Monday night. And I was profoundly fatigued the day after both of these meals. I did have a slight stomach upset after the pasta dinner, but that is usually because I eat too fast and swallow air, and am fine after a belch or two. :unsure:

 

So I ask you...does this sound like celiac should even be considered? And if so, should I go gluten-free for a month to see what happens, or stay on it so I can get a blood test when I see my doctor for a follow-up in mid-February?

 

Thanks for your feedback. :rolleyes:

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Yes. It could be Celiac. There are many symptoms of Celiac and the digestive ones aren't always present or evident ( you don't realize it's not " normal"). Persistent Anemias are the way many of us get a diagnosis. You would want to get your blood tests before going gluten free to rule out Celiac. 1 month gluten-free isn't really long enough to cure the long term vitamin deficiencies/ anemia.

cristiana Veteran
cristiana
Posted

I only developed 'classic' celiac symptoms (D) about two months before my diagnosis. Before that time, I was suffering from fatigue, anemia, migraines and what I would describe as a nervous stomach (sometimes played up but not always)... but no doctor put two and two together.    My own GP told me recently that a young man came in to see her with anemia - that is all - and she remembered me and tested him for celica et volia.   He had it.  Definitely worth considering that test. Keep eating gluten until the test.

notme Experienced
notme
Posted

i had all the 'classic' symptoms, but was misdiagnosed anyway  :(  the symptoms i *didn't* know were attributed to celiac (joint pain, migraines, fatigue, etc) all went away when i went gluten free.  not to mention my immune system is now bolstered up and i don't catch every flu bug and cold that comes around.  by all means, continue to eat gluten until all testing is done.  good luck figuring it out :)

Archived

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

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

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      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
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      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
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      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
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      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
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      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...