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Am I An Anomaly?!


gluten cheat

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gluten cheat Newbie

hi,

i was diagnosed celiac 5 years ago. i have since been on a mainly gluten-free diet. i don't eat much, but i do indulge occasionally, WITHOUT CONSEQUENCE. i almost never have a reaction, even when i really eat a lot of gluten over several days. my brother also has the disease, but is just the opposite. he is very sensitive and becomes ill if any gluten is ingested.

when initially diagnosed, my antibody count was through the roof. and, since embarking on the diet the last several years, nothing has changed. just had a test with a count over 300. all other levels such as calcium, iron, thyroid, etc. were perfectly normal, though! i feel healthy, energetic, and seem completely fine!

what can this all mean? am i just lucky? even if i am perfectly healthy, are there potential dangers because of my high antibody count?

from what i have read, i would guess that i am a highly sensitive, but silent celiac. am i still at high risk for something?

thank you so much for any insight...

al line


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darlindeb25 Collaborator

No, you aren't lucky. I think it's better to have a reaction, then you know you were glutened. You can't "indulge occasionally, WITHOUT CONSEQUENCE"..there are consequences, even if you do not realize it. You may not being feeling a reaction, but the damage is still being done....Celiac's have a 60% higher chance of stomach cancers when they are eating gluten. That's a consequence I am sure you do not want.

when initially diagnosed, my antibody count was through the roof. and, since embarking on the diet the last several years, nothing has changed. just had a test with a count over 300

Nothing has changed because you are not allowing your body to do any healing. You continue to gluten it, it absolutely can not heal.

Stop cheating..do what you know is right for your body.

tarnalberry Community Regular

you're a silent celiac. you don't get noticeable symptoms (well, that you connect to eating gluten, anyway), but you do still get intestinal damage and inflammation. this also makes you an 'untreated celiac' (since you still eat gluten - presumably at least a tiny bit once every two weeks?). this decreases your life expectancy by approximately 10 years, increases your risk for intestinal cancer and lymphoma, and increases your risk for deficiencies like anemia and osteoporosis.

Takala Enthusiast

You didn't say how old you were. But you're probably not over 30 if you're that cavalier about it.

I don't react overtly to gluten the way others do (but now that I'm 6+ years off, this is changing a bit, I can tell ) and I would have had a vastly different life if I had somehow been correctly diagnosed when I started having the other auto immune problems and arthritis flares, instead of having to figure this out by myself in my late forties by fighting with a neurologist over test results and testing myself out on elimination diets.

My old age will not be pretty even if I continue to thwart my other disease processes, but at least I'm doing better than I expected, not in a wheelchair, my brain is not too spacey, and I have outlived one parent agewise. But I will definitely have a much shorter lifespan because of the stress of the daily physical discomfort.

dream77 Apprentice

I have only antigliadin antibodies and the only reaction I have (I think it is from glutne) is neuropathy and raynaud's in a few fingers

i am only 31..

gluten cheat Newbie

thanks. i know i need to be more serious about the disease.

I am only 22 years old. I realize i must be a silent celiac, but it seems strange to me that i can eat so much gluten without a problem. traveling is always a time i steer off the diet. honestly, i can eat a LOT of gluten without symptoms. on my last trip, over a weekend, i ate several slices of pizza, a couple bagels, a donut, drank some beers, and other foods with "hidden" gluten, and never felt sick.

I am happy, energetic, and all my nutrient levels, etc. are perfectly normal. I have no symptoms or problems what so ever. is just being a silent celiac the explanation for this? all that i have read is that a small amount once and a while can go unnoticed. but i can ingest it almost daily, sometimes in large amounts. can i really have a antibody count off the charts without feeling anything?

i plan to go strictly gluten-free now to see if i can get my antibody count down. hopefully i have not done too much damage already.

can you please mention foods to avoid - other than the obvious - that may contain gluten?

thank you all

ang1e0251 Contributor

I think an endoscopy would tell the extent of damage for you. It could be worthwhile to your mental approach to your disease to schedule one.


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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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    • RMJ
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    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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