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

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


artzombie

Recommended Posts

artzombie Newbie

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

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

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

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.

  • 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 replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      High TTG-IgG and Normal TTG-IgA

    2. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      7

      Am I nuts?

    3. - lalan45 replied to GlorietaKaro's topic in Super Sensitive People
      7

      Am I nuts?

    4. - knitty kitty commented on Scott Adams's article in Ataxia, Nerve Disease, Neuropathy, Brain Damage and Celiac Disease
      2

      Could Gluten and Alzheimer’s Be Linked? New Research Uncovers Surprising Protein Parallels (+Video)

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

    • Total Members
      132,840
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
    • GlorietaKaro
      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
    • lalan45
      You’re not crazy—some people have severe neurological and physical reactions to gluten, not just digestive issues. While testing can be tricky without eating gluten, documenting symptoms and seeing a specialist familiar with atypical celiac or gluten-related disorders can help. Your reactions are real, and it’s valid to be cautious.
    • SamAlvi
      Anti TTG (IgA) 2.430 U/mL Anti TTG (IgG) 288.2 U/mL
    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
×
×
  • 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.