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Possible Celiac?
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Hi all,

i'm new here and i would like some of your advice...

ALL of these symptoms (except for tongue patches) come and go and are not there at the same time, sometimes i feel really great without any problems...

abdominal pain (mostly lower left quadrant)

generalized weakness

swollen, painfull, irritating lymph nodes (cervical left, axillary right)

small red patches on tongue + a nasty white coat + bad taste (candidiasis?)

tingling in hands & feet when the bodypart in question receives too few blood

diarrhea (non-formed stools)

headaches in front head (above & beyond the eyes)

foggy, itchy eyes

warm knees

sore ribs (especially at on place left from my sternum)

little yet significant hair loss

weight gain!? about 10 kilos in 2 years

loss of appetite in morning and noon

but craving for food and sugar in the evening.

sleepless before 3 o'clock midnight

easily irritated + mood swings + having a weird sense of humor

sharp pain in anus lasting for a few seconds (very rare) (i'm a hetero-sexual btw)

feeling like being run over by a train in the morning (lasts for half an hour)

unable to concentrate

lot of transpiration when doing something intensive

itchy inner-ears (especially the left ear)

weird, foul smelling substance between legs and genitals

recurring patches on lips (don't know how you call them in english)

oversensitivity to light (vampire-like)

pale skin (can change back in a nice tan in an hour)

thin nails

nail pitting on 2 nails (psoriasis?) (gone now)

so with these symptoms having almost 2 years i finally got my courage together to see a doctor a few weeks ago. He took some blood + a stool/urine sample + barium x-ray of abdomen + normal X-ray. When visiting the doctor for the results i really thought i had severe anemia (iron, B12, ...) and elevated white blood cell count of possible inflammations.

The results came back perfect. Iron, ferritine, b12 values were perfect he said (B12 was 374... is this normal?) my iron level was even slightly above average??? and the white & red cells and all were also perfectly balanced. X-rays showed nothing remarkable except for a spina bifida occulta <_<

I really had to pursue him to let him refer me to a GI specialist. I'm seeing the GI next week.

Do you think it is possible that i have celiac disease? What should i ask the GI? A small intestine biopt?

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It might be, but it might not be. It's hard to say. Did that blood test include the five antibody tests for celiac? That's important. Also, the tongue thing - having been on inhaled steroids for a good length of time in the past, yeah, I'd bet you've got thrush (oral yeast infection). They suck. But there are oral yeast medications that will clear that up fairly quickly.

I would encourage you to keep up with your doctor - or a new one if you're not happy about him addressing the problem once his first round of tests didn't show anything obvious. Definitely get the antibody tests, which should happen before considering a biopsy. After you finish the celiac testing you are going to do, regardless of the results, I would still encourage you to try a strictly gluten-free diet for two months to see if you notice any changes. The true test is what makes you feel better.

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The symptoms do sound like those of celiac but it can be hard to tell for sure from that alone because there are over 200 symptoms with celiac and some people get none at all.

You should probably at least be tested for celiac and request the complete panel which includes the following:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

The tTG, EMA, and total serum IgA are the most important tests to get done.

Do not go gluten free until after all the testing you want done is completed because it can mess with the accuracy of results.

Good luck :D

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You sound like the classic celiac to me. Most of that sounds celiac...the most important blood tests to get are the EMA and the tTG...the Anti-Gliadin tests are all but extinct with the much more specific and sensitive tests (in the form of the EMA and tTG). The GI can do the others...it won't hurt, but make sure the two mentioned are run. The others alone cannot diagnose.

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I agree with Kaiti and celiac3270. There is a good probability that you have celiac disease, but you should be tested to be sure as there are other possible causes for your symptoms. The tests all measure your reaction to gluten, so do not stop eating gluten until after the tests.

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There is a good probability that you have celiac disease, but you should be tested to be sure as there are other possible causes for your symptoms.

What are those other possibilities?

*Yeast overgrowth in my body? Doctor laughed at me when i mentioned that...

http://www.candidapage.com/cccomp.shtml

*CFS?

*Fibromyalgia?

*IBS?

maybe I should begin eating a sugarfree diet...

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You have a great probability of celiac: 1/56 with any related symptoms have celiac, and you have sooo many related symptoms, that I don't see how you COULDN'T. IBS is often used as a label when the doctor doesn't really know what's wrong, but it's something GI related.

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You should probably at least be tested for celiac and request the complete panel which includes the following:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

The tTG, EMA, and total serum IgA are the most important tests to get done.

hi again,

well, I just came back from the Doc. My blood was tested for all the above antibodies. All are negative... Doc says Celiac is practically impossible. My bloodwork was very good actually. No deficiencies or abnormalities at all. He also did a sigmoidoscopy (for my lower left abdominal pain... he looked until ascending colon) and didn't saw any abnormalities expect a few red patches. Possibly from a previous infection.

Anyway, my official diagnosis is IBS <_<

What should I do now?

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    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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