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Can My Gi Dr. Be Wrong?
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10 posts in this topic

:unsure: hey everybody...i've been cheatin with the gluten-free diet here and there...And i feel fine...except for bloating?...can my dr. be wrong about the bloodwork, and biopsy?
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Eddie,

You're probably just a celiac without a lot of symptoms -- bloating, plus bloodwork, plus a biopsy would mean you surely have it, I would think. Some celiacs have no symptoms; you have very mild ones.

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im like that to...i cheat and i feel fine (i havent been dxed by the doc but im pretty sure i have celiac disease) but remember you may not have symptoms but you are still hurting your self on the inside. jus be strong and try not to cheat!

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Sorry Eddie, but the other two here are right. Some people go their entire lives with no symptoms at all. My son has no "GI symptoms"...none of the diarrhea, bloating, etc..., he just suddenly lost a lot of weight and was very lethargic. He's been gluten-free just over a month now, and he's already gained 5 lbs back!

Anyway, if your blood work said you have celiac disease, you have celiac disease. You are just among the "lucky" ones that don't feel it when you cheat. I say lucky bc I wonder about that sometimes. It would be great for those who DO get those symptoms to be able to flub, or have someone else flub, and not have to pay for it for hours/days/weeks after. But, on the other hand, those who do not have any of those "consequences" tend to think it ain't no big deal and "cheat" and cheat often...and do some serious damage to their insides.

But, as I've said to others before, it's all up to you to decide how strict you are going to be. Just remember, though, you can develop "new" symptoms at any time. So that gluten-filled food you eat could be your immediate ticket to the "montazuma's revenge 5K" to the bathroom!!!

Welcome to the boards!

Bridget

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My 11-year-old daughter was biopsied only because I was dx'd with celiac disease. She had NO symptoms, elevated bloodwork. Her gut, however, was a mess. Think I should let her eat gluten? Didn't think so! Stick with the doctor's advice--how lucky you are to have a doctor who actually dx'd you in the first place!

Dana

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You're probalby just A-Symoptommatic

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As others said, if your bloodwork and biopsy were positive, you absolutely have celiac. Mine were all highly positive and I was so ill I was near death, yet when I make mistakes now (I've never cheated on purpose) I don't react.

richard

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I doubt your lab made an error, but it is remotely possible. If you are concerned, repeat the blood work. If your gut doesn't play up too much, you may be working on some other autoimmunde disease in your future, like lupus, rheumatoid arthritis, asthema, or something else equally difficult. Look at your parents, grandparents and their cousins and see what your heritage tends towards. Some of the possibilities of untreated celiac disease are fatal, so I would recommend anyone who is cheating to get serious.

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my grandfather never drank..but died of Liver Cancer when my mother was a teen...but they were from a Korean Ethnic back ground...i know it is rare in the Asians to have celiac disease...but i'm an American born and raised...she doesn't like to talk about it...i'll ask my dr. again for a second bloodwork, and i have been goin through meds for my hernia, hemmroids, and stomach ulcers...which probably is from havin celiac disease, right?....

but i'm done cheating now, b/c i was in sooooo much pain, to the point i was goin to call 911, so i'm done with cheating... :)

itz funny that i would have to call 911 to request medical support when i'm an EMT myself :D

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Well if you were in so much pain when you were cheating then you know you have it! Why would you get re-tested?

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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