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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Possible Celiac?
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8 posts in this topic

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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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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