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To Go Full Out Or Not - Guten Sensitivity And The Fear Of Making It Worse


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#16 Madagascar

 
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Posted 20 January 2013 - 10:41 PM

i would say i have very few problems with eating gluten foods - i'm only 2 months gluten-free, and i did get tested but the tests were mixed and not clear-cut that i have celiac disease. some things were high enough to register, some were not and i didn't get the biopsy done.

here's what keeps me gluten-free, however: my mother's side of the family (i'm pretty sure my mom had celiac) has auto-immune diseases galore. i don't want them. my grandmother and 2 of my 3 uncles had diabetes and none of them were overweight and all lived an active life (farming & construction work). i think 7 of my 15 cousins have diabetes. i have a cat that's been diabetic for 2 years - and i don't want it. my mom had and one cousin has ulcerative colitis; my grandma had crohn's disease.

i've had stomach problems since i was a teenager and i have enough symptoms that i'm positive i do have it. so even though my stomach was only upset perhaps once every 3-4 weeks while i was eating gluten, i'm trying to be 100% gluten-free because i don't want those auto-immune diseases that seem to come with the antibodies from celiac disease.

it's not fun avoiding gluten, but it's more fun than the prospect of developing those diseases. maybe you don't have a family history like that so it's not as scary of a prospect, but it's sure working for me. i didn't actually know of all of my cousins' problems until i went gluten-free and opened a conversation up with a bunch of them on facebook.

i'd just encourage you to look at the big view - as a college student i'm assuming you're 20ish and you'd like to live another 60-70 years and be healthy as possible for those years.

hang in there! you'll figure out how to manage things. having food with you so you don't feel compelled to eat others' food is a great idea. i wouldn't think twice about saying "i'm allergic to gluten" either. i had lots of food allergies by the time i was in college and people were great about understanding and not pressuring me. your real friends will help you out and whatever the rest think doesn't matter.
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Childhood: canker sores, zillions of cavities, and multiple dental enamel defects (not decay). Acne began at age 9, became cystic acne at 15ish, was bad til early 20's, occasional break-outs now only if i eat certain foods.
1968 - allergic to bacon (arm rashes) & orange juice; sensitive to soy
1970s - lots of digestive problems, allergy to citrus, citric acid, cinnamon, lactose intolerant, rosacea from foods
1980s - allergic to oregano, basil, thyme, pork, strawberries, paprika, smokehouse-type seasonings, peppers
1990s - discovered digestive enzymes (YAY!) and my stomach issues resolved by 90%
2012 - diagnosed with celiac via blood tests (tTG) and genes (HLA DQA1*0201: DQB1*0202)
After learning about celiac, it is obvious my mom had it (ulcerative colitis), my brother has it, and my 3 young adult children have it (2 have digestive problems + anxiety; one has DH). we all went gluten-free november 2012.

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#17 GFinDC

 
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Posted 21 January 2013 - 06:10 AM

Hi Laura, You are right. There is increasing information that non celiac gluten sensitivity is associated with neurologic problems well as autoimmune problems, likely through our innate immune systems. It is not as "harmless" of a diagnosis as it is billed to be!


Hi Giggleburger,

I agree with Jebby, we don't really know what the consequences of NCGI are. It was confirmed to exist recently but that is about it. No long term studies have been done to figure out what it does to people. And the issue of damage to the gut is not resolved. The innate immune system is one of the possible players in Crohn's that I have seen discussed. The article linked does list some possible consequences near the bottom. Remember though, this is not definitive, but just a short study, not a long term project to really figure out what it does to people's guts after a few years.

The endoscopy can only reach about 5 feet of the beginning of the small intestine, so anything beyond that is hidden from the doctors. What happens to that area in NCGI? We don't know yet.

Non-celiac wheat sensitivity article
http://www.celiac.co...ists/Page1.html
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#18 cavernio

 
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Posted 21 January 2013 - 07:24 AM

"I just don't know if that happens if it's a sensitivity since it's not the exact same issues?"

Firstly, to reiterate, you can't say you don't have celiac disease if you've never been tested. My intestines were seriously damaged by the time I got diagnosed but bowel issues weren't my main symptom. I think my mental health problems (and all the usual unemotional problems that go with it like fatigue and brain fog) are from undiagnosed celiac disease, and they started 13 years ago. I slowly developed peripheral neuropathy before I developed any sort of intestinal pain and bloating too.
If you can hack eating gluten for 3 months, you should schedule a biopsy and blood test in 3 months and know for certain. You will then have a medical diagnosis (imagine when you're old or even just in hospital for some accident and some idiot nurse is looking after you and trying to feed you bread because you don't really have a problem with gluten), plus you won't have to worry about all this wondering that you have.

As to actually answering your question about whether it's the same thing or not, unfortunately there's not good clear-cut knowledge about gluten sensitivity. But I find there's also more information about celiac disease and gluten sensitivity than you've probably been exposed to. Just last week I discovered things very pertinent to my own situation. Like this article I just read (it's a little technical but pretty good given how much of a scope it has) that's made me realize my hurting hands and feet are likely not just vitamin deficiencies but my body that has attacked and damaged parts of my nervous system as well as my villi.
http://integrativehe...t-to-brain1.pdf
Even if you just browse, there's a very simple diagram on p.327 that shows that different Tcells found in different parts of the body can act separately or together to be a part of celiac disease, each with their own 'job' of damage.
http://www.ncbi.nlm..../v072p00560.pdf is another good read if your symptoms involve things like headaches or fatigue or other 'mind' issues.

People with gluten sensitivity often have positive blood tests but negative biopsies. But then you've also probably heard that you can have negative blood test but positive biopsy. With that said there has to be a group of people who are negative in both but who still react to gluten.

In any case, I guess this is more of a personal revelation of mine, but I don't think gluten sensitivity is as separate from celiac disease as I thought just a few days ago.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#19 nvsmom

 
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Posted 21 January 2013 - 08:46 AM

I too thought I might be gluten intolerant before I tested for celiac disease too... turns out I actually had celiac disease...

You'll never know until you are tested if you are a celiac or not. I haven't read all the posts, so I'll ask: Is there any reason you don't want to be tested? If not, do it now while you are still eating gluten so you'll have an accurate test result (or as accurate as the current tests can be).
The most common tests are (I believe):
ttg IgA and IgG
total serum IgA
EMA IgA
DGP IgA and IgG
as well as the biopsy

Most doctor will do some sort of combination of the above tests. I just had the ttg IgA, IgA, and EMA IgA; it was just an extra half hour out of my life. I encourage you to do it. :)

Best wishes.
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#20 giggleburger

 
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Posted 21 January 2013 - 12:39 PM

You'll never know until you are tested if you are a celiac or not. I haven't read all the posts, so I'll ask: Is there any reason you don't want to be tested? If not, do it now while you are still eating gluten so you'll have an accurate test result (or as accurate as the current tests can be).


At this point I'm pretty much not eating gluten, just the very occasional bit, and I truly can't even fathom the thought of having to eat a lot for multiple months to get the test.
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#21 giggleburger

 
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Posted 21 January 2013 - 12:45 PM

To everyone else:
I hadn't realized there was so much possibility of issues even if you don't have celiac's. I thought I had done a lot of research on this stuff, how did I miss so much important stuff?!

And thanks to so many of you responding. =] I really only know anyone with celiac's through multiple people. And no one in my family has any issue similar to this (that they know of, I suppose). So thanks for all of your advice.

Seeing that there are strong possibilities to be more than just sensitive is a little unnerving, but I don't think I could bring myself to eat enough gluten for long enough to get tested to be sure. As I said (and this was partly about) I do sometimes eat gluten, but not as much as I'd need to be tested. But since it is possible... I guess I need to step up my game and stop slacking.
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#22 cavernio

 
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Posted 21 January 2013 - 05:28 PM

I imagine if I were in your shoes each day (or each hour even) I'd firmly decide to eat or not eat gluten. It's a very hard place to be in. I expect at some low point in your almost-gluten-free life it'll hit you that cheating isn't worth it. I just hope it hits you sooner rather than later.

I'm actually very glad I never tried to go gluten free on my own before getting tested. Rather, I did for about 2 days before I realized how impossible that would be and I'm just torturing myself and I'd occasionaly cheat ruining the whole experience . But I'm also really glad I didn't try on my own because I'm far from healed and it's been 7 months and even if I had been super strict I may have concluded that I don't have celiac disease 3 months in.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy




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