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Mild Celiac Disease?
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I have been recently diagnosed with celiac disease. We had been searching for cause of my anemia problem that was noticed only because I was refused as a blood donor. All my donating life (several years) I was always borderline of 38% hermaticrit. Well in the last year I fell below that and went to the doctor. Started with 3 iron supplements per day (1200% MDR). Iron improved but a colon endoscopy was ordered (close to 50 years old anyway). That proved normal so they scoped from the other direction and found short and flattened villi. A biopsy confirmed celiac disease. A blood sample was then taken.

My question is: Since my symptons have been mild after I have been on a gluten-free diet for 6 months, will my system become even more sensitive to gluten. I consider myself to be pretty healthy; my physical conditioning is better than most people half my age. If in six months I cheat or have glutin by mistake, will my system revolt and act like so many people I've read about on the forum? Or is it possible to have a case of mild celiac disease? Perhaps my atheletic training has masked some of the problems. Even when anemic I was on the elliptical 50 minutes per day maintainingng a heart rate of 150.

Were any of you diagnosed in around the bout way? (I don't have the stomach cramps, diahrea only when I eat bread after a missed meal.)

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If anyone had a case of "mild" celiac (symptom wise) I could probably be it. Particularly in the gastro department. But yes, I've definitely gotten more sensitive to accidents over the eight months I've been gluten-free.

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Dale,

I don't think Celiac Disease is something you can have mildly. You either have it or you don't. However everybody is different and can react differently to different things. Let's say for instance we both have a milkshake with a small amount of gluten in it, I may react quite badly and you might not react at all. This doesn't mean that your intestines are less damaged, it just means that our bodies reacted different. I notice that I am too more sensitive to an accident since going gluten free.

Hope that helps :)

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I never had the typical celiac disease symptoms and I was diagnosed via a endoscopy - done becauase of reflux. I was shocked to find that I was positive -since I really never had any overt stomach problems. I have been gluten free for 1 1/2 years and if I happen to get some gluten by mistake I now get a very bad stomach ache and get sick. This lasts around 4 hours and then goes away. I definitly feel that I am more sensitive to gluten at this point and I have become very strict about my diet. I eat almost everything(not gluten) as long as I cook it - I eat very plain going out (chicken - no seasoning etc.). It is not worth the pain.

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SILENT SPRUE

I was the same no great sympton, great shape, exercise, but turned down to be a blood doner (after given for 10 years). No stomach ache or signs of eating gluten. gluten-free since Jan. I think it is litterly impossible not to get some gluten and

this being said, I have not had any reactions. I did eat some doritos, but spit them out and still never had a reaction. I think will always have silent sprue.

When they called to tell be I had this I said" but I don't feel bad now".

Course I now know that I was exhaused everyday of my life, but still

execised and worked hard at not noticing I was being dragged down.

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I, too, am among the asymptomatic group. I was diagnosed after years of unresolving anemia, but never had GI symptoms or symptoms from the anemia. I still am unaware if I have accidental gluten ingestion. People keep asking me if I feel better now that I don't eat gluten. I tell them that I didn't feel poorly before diagnosis and I notice no difference since. I saw my labs and biopsy results so I don't consider my celiac disease as mild and I am very compliant with my gluten free diet. I have been gluten-free for about 7 months and my labs are definitely improved. I still eat out and travel alot (I try to always make the best choices, but assume that I am getting accidental gluten). For me, it is hard to know how strict to be in my kitchen (I haven't changed utensils, etc) as some people suggest is absolutely necessary.

L.A.

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hey celiacfreeman,

i thought doritos were gluten-free?

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Hey, Jen, NOPE!! Some of them use wheat starch in the cheesy coating. It is buried in the middle-to-the-end of the ingredients list. That was my favorite chip, too!

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Talk about opposite ends of the spectrum: my 11 year old daughter and I are both celiac disease. I was a total wreck for years, one foot in the grave. The only symptom she had was a sore on the corner of her lip as pictured on a celiac disease website, zero intestinal complaints. Her labs were awful and her gut was a mess! I read that it is not uncommon for a celiac to reach the age of 70 totally asymptomatic.

FYI, ever wonder why all those yummy gluten-free cookies and crackers are imported from Italy? It's because ALL children there are tested for celiac disease before the age of six. Can you believe it? Think how less complicated our lives would be if we had that kind of testing in the US.

And in Europe you can walk into a McDonald's and order a burger on a gluten-free bun!

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dana,

I heard that about Italy!! I think that is amazing, they must have really good pasta there then!! I'm trying my hardest to go there and see what it's like for a person with Celiac!!!

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Maybe we should all go to Italy and ask the doctors there if we have celiac disease. At least they won't treat us like stupid idiots over it!

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I was in the process of cancelling a trip to Italy when I started to read these posts. I was diagnosed with celiac disease only 3 weeks ago by a dermatologist who spotted DH and got a positive biopsy. I didn't have a clue! I was told I had a sensitive stomach all my life, but never saw a Dr. unless I thought I had food poisoning (funny, I seemed to get it a few times a year!) So I can still go to Italy?

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Hi all,

I live in the uk and was diagnosed with celiac disease last august at the age of 33.

I had been having stomach problems for years and always put it down to eating too fast or eating too much junk food.

I have read most of your comments with great interest and although my health has improved since being on a gluten free diet. I have found that I do react more severly when I accidently take in gluten.

It appears to be good that people are being diagnosed early on in Italy and that they get better care dont know as I have not been there but Portugal was quite switched on when I stayed there last year and was able to eat a wide range of food that was gluten free.

In the uk however it is a differnt story when I go into Burger king or Mcdonalds and ask for a big mac or whopper meal without the bun I get strange looks and people laughing at me only on a couple of occasions have I had someone who was switched on and was ok with what I was asking for. I have also been into pubs and restuants where I have been informed that there is nothing on the menu that is suitable for a person on a gluten free diet.

Its nice to know that I am not the only one who has problems trying to eat out hope my contribution is of some use to you

bye for now lee :D

ps sorry to dana g if she also gets this message I have just joined the forum and it has taken me a bit to work out how to post a message

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    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
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