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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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    • somethinglikeolivia
      Responding to both of your replies: thank you so much!! That makes a lot of sense and helps me feel better about it - I really appreciate the clarification and recommendations. You guys have been very helpful and this site is a gift. Thanks again! 
    • trents
      I think giving attention to the main sources of exposure such as direct consumption of gluten and gross cross contamination with reasonable attention to handwashing and thorough counter top cleaning and dishwashing should cover cross contamination issues. The biggest precautions would be eating in restaurants and at other's homes. Don't get paranoia over it and don't make trouble where there is none. As far a what you communicate with your physicians, just tell them what you know. Strongly positive antibody tests, negative biopsy, positive symptoms when consuming gluten with clearing of symptoms when gluten free.  
    • trents
      Occasionally we do see anomalies where celiac antibody tests are positive but biopsies are negative, and even visa versa. Sometimes, damage to the small bowel lining is patchy and unless numerous samples are taken from various areas, the damage can be missed. So, there's that issue as well. I think in your situation, the tell-tale indicator is the difference in symptoms between when you were off gluten and when you were consuming it.   
    • somethinglikeolivia
      Okay, that makes sense - so based off of the 90% odds that it is positive, it’s worth switching to fully gluten-free? How strict do I need to be with cross-contamination, handling, etc. Is it something that can go by feel, for instance if I feel okay making my family sandwiches and handling the bread as opposed to eating it, or is it something that is causing silent damage even if I feel fine? Also, do I make it clear to my rheumatologist and other medical providers that I am celiac? Or will they veto that due to negative endoscopy? Thanks again for the help!
    • Scott Adams
      If you look at the article that I shared you will notice that "The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease," so your results indicate that you very likely have celiac disease, especially if you also have symptoms while eating gluten that go away when you stop eating it (although many celiacs don't have obvious symptoms).
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