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New Here--does This Sound Like Celiac?


pellegrina

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pellegrina Newbie

Hi everybody--

A week ago I thought I was a normal, relatively healthy 45-year-old woman with some annoying symptoms of middle age, or maybe perimenopause. I'm skinny, have eaten anything I wanted my whole life, although the past year or so I've noticed a lot of heartburn. Also, about two years ago I was diagnosed with anemia and have taken prescription iron pills ever since.

Then, for five mornings in a row this week, I had pretty bad abdominal pain, like really bad indigestion (sharp, not nausea). It would start shortly after awakening and go away only after I'd been up for a couple hours, and had gone to the bathroom a couple times. Finally, I Googled "morning stomach pain" and ended up on a Celiac site. I was astounded to see that I have more than half of the symptoms! Anemia, abdominal pain, diarrhea (fairly often but not chronic), joint and muscle pain (sometimes severe but I chalked that up to 30 years of waitressing), hair loss, canker sores, bone-crushing fatigue, shortness of breath. Some I've had for years, others more recent; some happen often, others less so, but it never occurred to me that they could all be symptoms of the same thing. I also suffered a miscarriage last year, my first ever after having four healthy children but I figured that was because I'm over 40. Even so, all of this stuff could be explained away by other things, except....

This is pretty gross and embarrassing, but over the last year I've noticed a really foul odor from my stools--seriously bad, like something died. Also, several times, I've noticed what looks like orange oil floating on top of the water after a bowel movement. I didn't really think anything of it, except, Geez, what the heck did I eat?? Now I realize that it was a symptom on the list: "fatty stools". Has anyone here had similar symptoms? I've never mentioned it to my doctor, because it didn't seem like a big deal (and I was embarrassed to bring it up).

So now my husband thinks I'm being paranoid and ridiculous, but doesn't all this add up to a possibility of Celiac? I have an appointment with my regular doctor in two weeks to discus my anemia and I'm going to bring my list of symptoms and ask for the gluten antibody test, or a referral to a specialist.

Does any of this sound familar to anyone? Thanks in advance for all your help!

Denise


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*lee-lee* Enthusiast

some of your symptoms remind me of how i felt before i was diagnosed. i was anemic as a teenager and at the beginning of this year i began experiencing stomach problems. i let it go on for a few months and it wasn't until i realized i was popping Imodium's every day that i considered i might have more than an upset stomach. additionally, i was always tired and had developed pretty intense joint pain in my hips.

i got tested and sure enough i have Celiac. soon after starting the diet, i realized many of my other seemingly non-related symptoms improved dramatically. my other (non-GI) problems were certainly not as severe as other people experience but i definitely saw a difference.

it certainly sounds like you've got nothing to lose by having your doctor run a full Celiac panel. Be sure you continue consuming gluten until after all tests have been completed - blood and biopsy. that was one thing the doctor didn't mention to me...

maybe it's a guy thing but my boyfriend had a hard time understanding my new lifestyle. i had to explain it many, many times before he understood this wasn't all in my head. if it turns out you do have Celiac, be patient and just keep explaining things to your hubby. this forum is a great resource...for you and him.

jerseyangel Proficient

Hi Denise--welcome! :)

Your symptoms do sound familiar. Definately don't stop eating gluten, or even cut down until you see your doctor. Ask him/her for the Celiac Panel. It consists of these--

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Best of luck--keep us posted.

mftnchn Explorer

Yes, the fatty stool and the odor are very typical. I totally agree that you should ask for testing and be sure they do the full panel. Not all doctors know what to order. So print that out and take it with you to be sure you get all the tests.

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      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
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