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

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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:

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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.



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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.

Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013



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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 :)


misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010


only YOU can prevent forest fires - smokey t. bear


have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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