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Sub-Clinical Gluten Sensitivity? Or Hidden Celiac?
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Ever since I was a kid, I've had an almost constant uncomfortable, gnawing stomachache, which escalates at night. I've had adhd (diagnosed since fourth grade), anxiety problems (meds and shrink and everything), and I developed severe headaches when I hit puberty. I've always been rather scrawny. :\ I was tested, as far as the stomachache goes, for everything under the sun (except any sort of food allergy. Ha) and my doctors simply came to the conclusion that I was constantly nauseas, constipated, and uncomfortable because I had a nervous stomach because I was especially anxious. Same sort of thing with the headaches. I had just decided that I was a freak and broken and nobody could fix me.

I am subscribed to mercola.com, a naturalist doctors newsletter. He had an article about how many people (especially those of irish descent. I'm of irish descent!) have sub clinical gluten intolerance, in which they dont have the proper enzymes to break down gluten and it just destroys their digestive tract and they cant absorb things and it wreaks havoc on their bodies. All the symptoms fit me. There were tests, but he said that they were mostly for celiac, so I dismissed it immediately. So the next day, I went completely gluten free. Like that. And also lactose free, because he advised doing that too (plus, milk is for baby cows. Not humans.).

Within a few weeks, I felt better. I had more energy, and I could sleep at night (a symptom I had taken for granted until I noticed I had it). No more stomach aches. No more headaches. I was gonna wait for a few months to start expecting adhd help.

But then, as I did more research, I started realizing that it may be the elusive celiac after all. I had dismissed it at the beginning--oh, theres no way I could have something THAT intense. But the internet said that there were many undiagnosed celiacs, and that many symptoms can be seemingly unrelated but really are.

Anyways, after all that flack, I'm looking for a celiacs opinion on a few things. Firstly, could I possibly have celiac? I'm not anemic to my knowledge, but I've got a lot of problems throughout my system (so many different ones, I must be the most unlucky person ever if theyre all caused by different things.). Secondly, should I stop being gluten free and go get tested? Or is it okay to just not know and roll with it if I feel better? And thirdly, is there any advice that anyone could give me?

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If you feel much better off gluten and have a lot of celiac symptoms, yes you could be celiac.

I chose not to gluten myself and I was never tested. My doctors have said if I'm willing to eat a strict celiac diet and assume gluten would do damage, it's OK to not be tested. Even traces of gluten make me sick, so that's fine by me.

In the US, there are no advantages to being diagnosed. There are no dietary allowances as in Europe, and all the "firm diagnosis" does is add a black mark to your medical record and make it harder to get insurance.

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I think doctors should be highly suspic

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If you want to get family member tested, or on the diet to see if their health improves, a diagnosis can be persuasive. The blood work may be worth the effort if you haven't been off gluten foods very long; whether you want a biopsy is up to you.

The major benefit for me is that I KNOW that I cannot eat gluten, as I will develop some malabsorption complications if not also full-blown celiac disease and they are not fun. I might be tempted to cheat otherwise.

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Everyone is different in their abillity to stay the course and not self-doubt. As one who has never put much stock in what doctors told me, it makes absolutely no difference to not have any testing or diagnosis. I know what the wrong foods do to my body and I avoid them. For others, they need the piece of paper with the diagnosis on it to confirm that this is what they should do. Of course, getting that elusive piece of paper can be really hard, if not impossible for some. And I personally would not consider it worth poisoning myself to try to get it. But that's just me. Hopefully you know yourself well enough to do what is right for you. :)

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Hi there, I consider myself to have Celiac. I have been sick almost all of my life. I've had depression, fatigue, asthma, allergies, as well as anxiety and the "flu", at least that's what it felt like, since I was 7 years old.

Dr after dr told me everything from "there's nothing wrong with you" to "you're stressed out" to "it's all in your head, here take these meds, you'll feel better." ugghh. Nothing helped.

I was finally dx'd in '08 with fibromyalgia and RA. None of the meds helped so was doing research when I found the gluten. Untreated celiac can lead to cancer. Cancer runs on both sides of my family BAD. I researched more for a few weeks. After learning that the blood tests and the biopsys come out negative a lot plus I was at the point I didn't want to mess with any more dr's, I decided to go gluten free on my own.

All, of my symptoms have resolved! It's taken just in the last 2 months for the fatigue to start easing up though, Thank goodness.

I will NEVER EVER eat gluten again! I have never felt this good in my life ever.

Whatever you decide, I hope you can feel like I do. It's wonderful and amazing. I no longer feel like I'm suicidal.

Here's to a better you.

Vicky

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I was lucky enough... after a lifetime of being told it was all in my head, to have gotten a doctor who was smart enough to listen to all the evidence in spite of a negative blood test and humble enough to press on for a proper diagnosis.. I would not count on that happening again though... even with the same doctor.. You know what is best for you and no doctor will ever be able to understand your symptoms to the depth that you do. Trust your gut.. you sound remarkably resilient to have lived a life with that much discomfort and improper diagnosis and still have managed to get it figured out.. on your own... with no real medical support other than to be written off as "anxious" or "nervous." All one has to do is read all the above stories to realize that, once properly treated, all those things are capable of resolving themselves.. Be strong and trust yourself. It may be tough to explain it to others who expect an expert medical opinion (read here to see how many expert medical opinions have messed up lives because of missing this diagnosis) before they will believe anything. Resolve to not care what others think.. live your life as you need to to be healthy..

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I was lucky enough... after a lifetime of being told it was all in my head, to have gotten a doctor who was smart enough to listen to all the evidence in spite of a negative blood test and humble enough to press on for a proper diagnosis.. I would not count on that happening again though... even with the same doctor.. You know what is best for you and no doctor will ever be able to understand your symptoms to the depth that you do. Trust your gut.. you sound remarkably resilient to have lived a life with that much discomfort and improper diagnosis and still have managed to get it figured out.. on your own... with no real medical support other than to be written off as "anxious" or "nervous." All one has to do is read all the above stories to realize that, once properly treated, all those things are capable of resolving themselves.. Be strong and trust yourself. It may be tough to explain it to others who expect an expert medical opinion (read here to see how many expert medical opinions have messed up lives because of missing this diagnosis) before they will believe anything. Resolve to not care what others think.. live your life as you need to to be healthy..

Amen to that, chasbari. Well spoken! In fact, hate to say this but I couldn't have said it better myself :rolleyes:

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    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
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