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New To This Forum, New To This Realization...


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#1 Vasiliki

 
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Posted 06 February 2014 - 07:59 AM

Lets start with the easy stuff...
 
My name is Danielle and I live in Alberta, Canada. Turning 27 this year (when did that happen?) and I've found this forum recently as I look for both answers and support.
 
I am not formally diagnosed with celiac disease, however, I am realizing more and more that this may be the answer to the many misdiagnoses I've had over the years. At first there were whispers of symptoms, just barely hinting that something was going on. But it was this past weekend that my body had it's first over-reaction. It was so bad that I can't deny that something is going on. Once I started researching celiac and it's many associated symptoms, it actually made me nod my head almost constantly as I checked off the issues I've been having all my life.
 
The past 6 years have been the worst, with more obvious issues hitting very recently.
 
I was diagnosed with Pityriasus Rosea about three years ago due to a repeat rash I kept getting. My doctor did his best to identify it, but in the end told me this condition was subject to many variances and that no prescription could help. I treated it with UV therapy, which helped. But I also 'cleaned up' my diet to see if it was a food allergy. Eventually, the biggest rash went away.
 
However, after that big reaction, I noticed something that was my first clue. The rash would come back if I went off my more 'clean' diet. Only this time, it was blisters down the insides of my forearms. Sometimes on my ribs under my arms. I'd switch my diet, and they would go away again.
 
Any type of alcohol makes me instantly sick, except for vodka or some distilled spirits. I get instantly and horrifically sick on wine. Beer is out of the question.
 
My boss right now is gluten-free, and told me to try it. I did, and my rash went away. My headaches and nausea and stomach pain went away. My skin looked better. I could sleep and my joints stopped aching like I always had the flu.
 
And remember what I said about this past weekend being my overreaction? I had been gluten-free for a few months now, even through Christmas. But this weekend I had pizza, battered wings and two helpings of glorious cake at my friend's birthday celebration. I just had 1 ounce of vodka with clamato, so I definitely wasn't drunk.

But boy oh boy, was I SICK that night. It lasted four days, and I'm still feeling 'unsettled' today. And wouldn't you know it, the rash on my arms flared right up again. Ugh.
 
Here's my major issue... I have no problem going gluten-free. I love cooking and did just fine even through Christmas this year with just sticking to my protein and fats, and a variety of veggie sides. My family, however?.... They think I'm just being a 'hippie' and some members have actually been offended when I've refused bread at dinner, even when I explain it makes me 'sick'. The whispers came back (quite hurtfully) that I was using it as an excuse to skip carbs so I could 'stay skinny'.
 
I trust my body telling me that gluten is just not something it wants to deal with anymore. I feel better without it, my body responds better without it. But at this point, I feel as if I need to get a clinical diagnosis in order for my family and my fiances' family to believe me.
 
But I also know from reading here that blood panels can come back negative. I also hesitate to eat a TON of gluten (even briefly) just to get a 'positive', especially with my new job.
 

So at this point, I'm wondering: I want to go to my doctor and tell him my concerns. He's an amazing doctor, very open-minded and trusts that people know their bodies. But if I get a negative blood panel, what do I tell people? Is it morally okay to tell people you have gluten intolerance even without a professional diagnosis? Or should I just suck it up, gluten it up and try for that positive professional diagnosis?

 

I'm so glad I've found this place. The amount of information here is incredible. Thank you


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#2 glux

 
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Posted 06 February 2014 - 09:14 AM

Welcome! :)  Your story is nearly identical to mine and I'm in much the same position trying to decide whether to purse an official diagnosis.  I'm very new to this so I don't have much to offer in the way of advice, but I understand exactly what you're going through and i'ts no fun.  The good news is that you've identified what's been making you sick all of these years, now you can start healing and feeling better and nobody can change that or take it away from you. :) Those of us who suffer from a form of gluten intolerance know how very real it is, official diagnosis or not.


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#3 nvsmom

 
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Posted 06 February 2014 - 09:56 AM

Welcome to the board.  :) 

 

A gluten challenge before testing usually requires a good 2 month of eating gluten regularly (about 2 slices of bread per day). I can see how you'd like to skip that! An endoscopic biopsy requires a shorter gluten challenge of about 2 or so weeks, but the wait to see a GI specialist in my home town, Calgary, is about a year so I'm not sure if that's a good fit for you either.  

 

Another option would be to check your rash for dh (dermatitis herpetiformis) which is also a way to diagnose celiac. A dermatologist would take a biopsy beside the rash, and that can show autoimmune antibodies that celiacs have. You'd need to be able to get in to see a dermatologist on pretty short notice though. Check out the dh board for more info.

 

If you have a gluten sensitivity, you have either celiac disease or non-celiac gluten intolerance (NCGI) which has all the same symptoms as a celiac minus the villi damage (which the blood tests show is being attempted) or the dh rash.  You definitely have one problem... Tell people you have NCGI with possibility of celiac disease, if they don't respect that - that just says something about the type of person they are or their ignorance. It has nothing to do with you.

 

That's a shame people have commented like that. They really showed their ignorance. Even if you ARE passing on the bread to stay low on carbs so you stay slim - thats a GOOD thing! Eating low carb is generally a pretty healthy way to eat. Who wants to be fat anyways?  :huh: Even if you eat a typical diet and aren't in the mood for bread, so what? It's really a rather dumb thing to have said. LOL 

 

I like to counter with sweetness and guilt: " Oh, I know that my diet is a hassle but I so appreciate you helping me stay healthy.... I'll bring my own food because our diet is a pain and it's difficult to cook for if you don't do it already..." Stuff like that.

 

Or you could always sarcastically deadpan: "Yes, I am lying and just faking major health issues just so I can skip bread at this meal." LOL  :rolleyes:

 

I do want to mention though, be really careful eating out at people's houses. Most marinades, sauces and some spices will contain gluten. Even if they make you a gluten-free meal, you can't use their butter on your potatoes because it may be contaminated; and some of their cooking supplies (spatula, colanders, non-stick frying pans) may also have gluten stuck in them and potentially make you sick. Be careful.

 

 

I trust my body telling me that gluten is just not something it wants to deal with anymore. I feel better without it, my body responds better without it. But at this point, I feel as if I need to get a clinical diagnosis in order for my family and my fiances' family to believe me.
 
But I also know from reading here that blood panels can come back negative. I also hesitate to eat a TON of gluten (even briefly) just to get a 'positive', especially with my new job.
 

So at this point, I'm wondering: I want to go to my doctor and tell him my concerns. He's an amazing doctor, very open-minded and trusts that people know their bodies. But if I get a negative blood panel, what do I tell people? Is it morally okay to tell people you have gluten intolerance even without a professional diagnosis? Or should I just suck it up, gluten it up and try for that positive professional diagnosis?

 

I'm so glad I've found this place. The amount of information here is incredible. Thank you

 

 

In Calgary, the only celiac disease tests available (at least last year) are the tTG IgA (tissue transglutaminase) and the EMA IgA (endomysial) which they only run if you have had a positive tTG IgA. The tTG IgA is a pretty good test but it does miss a minority of celiacs, especially those who are IgA deficient - run a total serum Immunoglobulin A (IgA) to check for that.

 

This report discusses the tests on pages 10-12. The sensitivity of the tTG IgA is 75-95% (page 12) which means that it will miss 5-25% of all celiacs.

http://www.worldgast..._long_FINAL.pdf

 

If you can get the other tests (DGP IgA and IgG, tTG IgG) try to do so... if you test that is.

 

And no, I don't think it's wrong to say you have celiac disease, but you might want to consider saying NCGI or possible celiac disease just to be honest. Both are very real health issues, and that way you don't have to worry about fudging the truth. If people ask why you haven't tested, juts honestly tell them that the testing available is not very reliable.

 

If you decide to test (blood tests) and get a negative, then you know it's probably NCGI with a chance of it being celiac disease. If you have other autoimmune disorders, or your family does, that does increase the odds that it's celiac disease. A family history of diabetes (type 1), crohn's rheumatoid arthritis, Raynaud's, etc will make it more likely that you are dealing with celiac disease.

 

I hope that made sense.  :)

 

Stay warm! Brrrrrrrrrrr :ph34r:


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#4 CommaHolly

 
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Posted 06 February 2014 - 05:58 PM

I'd like to know what business of theirs it is????? I mean what difference does it make WHY you don't eat gluten? Maybe you just hate the stuff,,,,,,,,,,sheesh, people. :)

 

I'm not criticizing you, I'd probably feel the same way if it were MY family, but I'm a bit perterbed for you :)

 

I think I'd say,,,, "I'm a sure as I can be that I have celiac without putting my body through all kinds of hell and having minor surgery. I decided I'd rather not do that just for a formality."

 

end of story,,,,,,,,,,anything more, isn't their business.


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