For Those Without Symptoms - How Did You Know You Had Celiac?

[susanm]

I have no symptoms currently, but I had celiac as a baby and I have Addison's disease now. I also have osteopenia bordering on osteoporosis (I'm only 53), and I felt lousy after reintroducing wheat into an elimination diet (though no stomach symptoms). I read an article that said you can get other autoimmune diseases if you have hidden celiac disease, so I asked my doctor to test me. So far, my antigliadin antibodies are high. I'm waiting for a biopsy.

How did you know you had it if there were no symptoms?

[Tim-n-VA]

For me it was fluctuations on routine liver tests. That lead to a series of tests to eliminate possible causes.

In retrospect, I was probably not completely symptom free with occasional, seemingly random upset stomach episodes being related to high gluten consumption (wheat beer, pancake breakfast, etc.)

[samcarter]

Susan, if you had celiac as a baby then you definitely have celiac disease. Nobody outgrows it, but that is a commonly held belief that would have been around when you were growing up. Your osteoporosis is a sign of nutritional malabsorption, and yes, other autoimmune diseases can be a result of untreated celiac disease.

[ravenwoodglass]

I was not symptom free but a family member was, or at least they thought they were till they were gluten-free. They were found because of the reccommendation that all family members be tested after one is found to have it. After being gluten-free for a bit he realized that his skin issues were gluten related and that his 'normal' brain function was really being impacted by brain fog. He also lost a beer gut that the nondrinker had for years. With celiac being able to impact any organ in the body,including the brain, there are some who have been under the cloud for so many years that they feel 'normal', at least until the gluten is removed.

[greeneyes33]

At the end of may I started having this pain under my rib cage on the left side. It got to the point that I ended up in the ER. They diagnosed me with pancreatitis since my amylase and lipase levels were elevated. The did xray, ultrasound and ct scan. All were normal. They told me to follow up with a GI within 2 days. When I went to see him he said he wasn't so sure it was pancreatitis as I didn't have any of the other symptoms. He suggested an endoscopy to rule out an ulcer.

Had the endoscopy, I had no ulcer, but the biopsy showed blunting. Then he sent me for bloodwork and that was all positive as well.

I had never ever had a single symptom up until that day in May. I never had D. I could count on one had the amount of times I've had D in my entire life. I am always the complete opposite. Now looking back, I've been the the same dr for C issues. I've had a colonoscopy and he diagnosed me with irritable bowel and said I was "sluggish". I could eat rocket fuel on a loaf of bread and I never had any issues whatsoever. This diagnoses came as a complete shock to me.

I do have Hashimotos, which now I'm finding out is probably a result of undiagnosed celiac. The new specialist that I went to see (not the one that did the diagnosis, hes an idiot, but thats another post) said that I probabaly have had this for at least 20-30 years. Nice....

We are still not sure why my pancreatic enzymes being elevates has anything to do with the celiac, we are still investigating that, and I am still having pain, I'm not sure if its related to something that I'm eating and I'm not aware of.

So I would say that I didn't have symptoms until after the fact. If that makes any sense

[Beth in NC]

At the end of may I started having this pain under my rib cage on the left side. It got to the point that I ended up in the ER. They diagnosed me with pancreatitis since my amylase and lipase levels were elevated. The did xray, ultrasound and ct scan. All were normal. They told me to follow up with a GI within 2 days. When I went to see him he said he wasn't so sure it was pancreatitis as I didn't have any of the other symptoms. He suggested an endoscopy to rule out an ulcer.

Had the endoscopy, I had no ulcer, but the biopsy showed blunting. Then he sent me for bloodwork and that was all positive as well.

I had never ever had a single symptom up until that day in May. I never had D. I could count on one had the amount of times I've had D in my entire life. I am always the complete opposite. Now looking back, I've been the the same dr for C issues. I've had a colonoscopy and he diagnosed me with irritable bowel and said I was "sluggish". I could eat rocket fuel on a loaf of bread and I never had any issues whatsoever. This diagnoses came as a complete shock to me.

I do have Hashimotos, which now I'm finding out is probably a result of undiagnosed celiac. The new specialist that I went to see (not the one that did the diagnosis, hes an idiot, but thats another post) said that I probabaly have had this for at least 20-30 years. Nice....

We are still not sure why my pancreatic enzymes being elevates has anything to do with the celiac, we are still investigating that, and I am still having pain, I'm not sure if its related to something that I'm eating and I'm not aware of.

So I would say that I didn't have symptoms until after the fact. If that makes any sense

You are the FIRST person who I've "met" that also had that pain under the ribcage on the left side!! That was what got all this started for me. I didn't have CLASSIC Celiac symptoms with D and such. In fact, I thought the doc was crazy when they wanted to do the blood test. But all they told me about my biopsy was "suggestive of malabsorption syndrome" so I didn't know what it really entailed until later. But when I see a DECENT list of the actual symptoms of Celiac, I know I had MANY symptoms. This is a list of NON gastro symptoms that got my head to spinnin'...

fatigue and weakness (due to iron-def. anemia)

Vitamin and/or mineral deficiencies

Headaches

Joint/bone pain

Depression, irritability, listlessness, and mood disorders

"Fuzzy brain" or an inability to concentrate

Infertility

For women, abnormal cycles

Dental enamel deficiencies and irregularities

Seizures

Ataxia (poor balance)

Nerve damage (peripheral neuropathy)

Respiratory problems

Mouth ulcers

Lactose intolerance

Eczema/psoriasis

Rosacea

Acne

Hashimoto's disease, Sjogren's syndrome, lupus, and other autoimmune disorders

Early onset Osteoporosis

Alopecia (hair loss)

bruising easily

hypoglycemia (low blood sugar)

Muscle cramping

nosebleeds

swelling and inflamation

night blindness

[flourgirl]

I also had severe pain in under and to the left of my sternum. By that time I was desperately ill, though, and had so many symptoms my Dr. didn't know what to do. The unspoken concern was cancer......somewhere. Fortunately for me we added endoscopy as long as I was going for colonoscopy. Hurray for me. It took a very long time but the severe pain did go away once my body started to heal. When I get glutened I backslide big time, and the pain comes roaring back. Hopefully someday soon this will all be an unhappy memory....for us all!

[greeneyes33]

I would put the quote here, but I haven't figured that out yet but,

I've see that list of celiac symptoms too, but a lot of those are also the same as the thyroid problem that I have, so I guess I just get a double whammy!!

Not that I'm happy you had the same pain as me, but its good to know that I'm not the only one. I was worried it could be something so much worse....

[Hummingbird4]

I had pain in my upper stomach, right in the center under my sternum. It would come and go. After a few weeks of this pain, which got worse after eating, I scheduled an endoscopy because I was sure I had an ulcer. Lo and behold, the diagnosis was Celiac, which shocked the heck out of me. Then I had a blood test which was also positive.

No classic GI symptoms for me. I still occasionally get this stomach pain. It doesn't seem to be directly correlated with consuming gluten, because I've been gluten-free for 3 weeks now. (although I did just find out that my favorite salsa has "hydrolyzed wheat gluten" in it. WHY??? )

[Puddy]

I was diagnosed with osteoporosis last November and anemia in January. When the dr. found out I was also lactose intolerant she put all the pieces together. She did the biopsy during an endoscopy to see if I had a bleeding ulcer and it came back positive for celiac. She also drew blood the day of the endoscopy and ran the celiac panel. Otherwise, I had no digestive symptoms.