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Sub-Clinical Gluten Sensitivity? Or Hidden Celiac?


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7 replies to this topic

#1 xpaperbackwriterx

 
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Posted 05 August 2010 - 09:24 PM

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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#2 Skylark

 
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Posted 06 August 2010 - 12:36 AM

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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#3 nora_n

 
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Posted 07 August 2010 - 02:16 AM

I think doctors should be highly suspicíous whenever there is any non-thriving irish child with any kinds of stomach problem.

My own daughter had constant stomach problems, and pains, and ADHD, but back then one had to be seriously ill to get any attetntion from doctors. Her stomach was also attributed to "nerves".
I also thought that one had to have floating stools and be super-skinny and ill to have celiac.

She got immediately better a couple decades later when I suggested she go gluten free because of an episode of graves.

She says the special fish oils for ADHD work just as good as ritalin and takes them instead.

Interestingly, the first thing that gets damaged in celiac, is the ability to absorb fatty acids properly. One has a constant lack of these fatty acids.

Gluten triggers all kinds of other antibodies in the whole body, not just in the intestines.

I suggest you try to get at least the blood tests as soon as possible, before being off gluten for a long time.

You really sound like my daughter´s case.
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#4 sb2178

 
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Posted 07 August 2010 - 01:55 PM

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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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#5 mushroom

 
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Posted 07 August 2010 - 02:32 PM

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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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#6 txplowgirl

 
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Posted 07 August 2010 - 03:37 PM

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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Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#7 chasbari

 
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Posted 07 August 2010 - 06:19 PM

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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#8 mushroom

 
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Posted 07 August 2010 - 07:55 PM

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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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator




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