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Do You Think I Have Celiac?


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12 replies to this topic

#1 Chelsea_Lynne

 
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Posted 19 April 2013 - 04:38 PM

I have had stomach issues (cramps and diarrhea) since I was young, and I used to see a gastroenterologist. I believe she did the blood tests (whatever they had in early 2000s...I don't know if it is different now) for Celiac and they came back negative. She just diagnosed me with IBS. Years later, I decided to try eating gluten free to see if it helped. I have been eating gluten free for probably about 5 to 6 years now, and I no longer have the stomach issues that I used to have. I actually deal with constipation now, but I think that could be from eating a lot of rice products. It is such a pain to eat gluten free, and people always think I don't actually have Celiac since I was never officially diagnosed with it. I can't get tested though because I have been eating gluten free for so long. Recently, my twin sister got the blood tests done for Celiac and one of them came back positive (the rest were negative). She had the same stomach issues as I did, and decided to just start eating gluten free as well. Since eating gluten free, she has noticed her toenails are clearing up (she has had a problem with them for years that look like fungus, but it always came back negative for fungus).

 

I decided to just try something with gluten tonight to see what happened. I chose something that I have been missing...Twizzlers haha. I ate one Twizzler about 1-2 hours ago, but I haven't had any stomach issues yet...is it too soon to tell? This is so weird.

 

Update: I just started to get a slight headache. Could that be from the gluten? I actually used to get a lot of headaches when I was younger before eating gluten free.


Edited by Chelsea_Lynne, 19 April 2013 - 05:37 PM.

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#2 kareng

 
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Posted 19 April 2013 - 08:10 PM

One Twizler might not be enough gluten to make you feel bad after 5 years gluten-free. 


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#3 IrishHeart

 
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Posted 20 April 2013 - 04:34 AM

...yes, not enough to induce a reaction, probably.

 

And rice should not cause constipation. If you are eating lots of brown rice, you should be pretty "fibered up" and the pipes should

be running smoothly.

 

Something else is causing the big C in you. (IMHO of course.)


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#4 Chelsea_Lynne

 
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Posted 20 April 2013 - 09:40 AM

...yes, not enough to induce a reaction, probably.

 

And rice should not cause constipation. If you are eating lots of brown rice, you should be pretty "fibered up" and the pipes should

be running smoothly.

 

Something else is causing the big C in you. (IMHO of course.)

Really? I thought a small amount would be more likely cause a reaction after so long of eating gluten free since my system isn't used to it. Yeah..I guess it could also be that I don't drink enough water.


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#5 nvsmom

 
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Posted 21 April 2013 - 01:58 PM

I get migraines from gluten, so I would say that it is possible the twizzler caused it...but that is a very small amount.

If your symptoms have gone while on the gluten-free diet, I think sticking with it would be wise - especially if your twin has celiac disease which makes it more likely that you do too.

As an aside, hypothyroidism (Hashimoto's) can cause C, and celiacs have a higher incidence of it than the rest of the population. If you have symptoms beyond C, you could get it checked.

Best wishes.
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#6 Chelsea_Lynne

 
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Posted 21 April 2013 - 07:12 PM

I get migraines from gluten, so I would say that it is possible the twizzler caused it...but that is a very small amount.

If your symptoms have gone while on the gluten-free diet, I think sticking with it would be wise - especially if your twin has celiac disease which makes it more likely that you do too.

As an aside, hypothyroidism (Hashimoto's) can cause C, and celiacs have a higher incidence of it than the rest of the population. If you have symptoms beyond C, you could get it checked.

Best wishes.

 

Thanks. I actually do have hypothyroidism. I'm being treated, so my levels are fine now. 

I'm not sure if she definitely has Celiac since only one of the blood tests came back positive.


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#7 cavernio

 
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Posted 22 April 2013 - 05:39 AM

Well, you definitely have the genes necessary for it, and you had celiac symptoms before you were gluten free (although we all know celiac symptoms could be any number of things), and being gluten free makes you feel better.

If you had a really noticeable reaction from eating gluten, then that's either you reacting to gluten or a placebo. (If you were really worried about a placebo wait until all symptoms go away and get a friend or family member to feed you gluten in something at some unknown point in the future.) However, having no observable reaction to eating gluten doesn't mean you don't have celiac disease. It's sort of a one way street in those regards. We see posts here of celiacs who usually react to tiny amounts of gluten but, for whatever reason, ate a piece of regular bread, and they noticed nothing. Also, people used to think that celiac disease would cure itself after a time, and then people could go back to eating gluten, because they didn't get symptoms when they ate it.

 

You once thought you were a celiac, now you even have more reason to believe you are a celiac from your twin's diagnosis...even if you're dizygotes it's still a family member with it. Her diagnosis shouldn't make you question your own self-diagnosis now, it only strengthens it.

 

Even if you decided you wanted a straight out answer, ate gluten everyday for 3 months, then got a biopsy done, you could still be gluten intolerant without being a "gold-standard" celiac and have the biopsy come back normal.

 

Yes, headaches are a fairly common symptom for celiacs. But they're also pretty common to everyone.


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diagnosed Jan 2012, bloodwork only
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#8 Chelsea_Lynne

 
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Posted 22 April 2013 - 08:44 AM

Well, you definitely have the genes necessary for it, and you had celiac symptoms before you were gluten free (although we all know celiac symptoms could be any number of things), and being gluten free makes you feel better.

If you had a really noticeable reaction from eating gluten, then that's either you reacting to gluten or a placebo. (If you were really worried about a placebo wait until all symptoms go away and get a friend or family member to feed you gluten in something at some unknown point in the future.) However, having no observable reaction to eating gluten doesn't mean you don't have celiac disease. It's sort of a one way street in those regards. We see posts here of celiacs who usually react to tiny amounts of gluten but, for whatever reason, ate a piece of regular bread, and they noticed nothing. Also, people used to think that celiac disease would cure itself after a time, and then people could go back to eating gluten, because they didn't get symptoms when they ate it.

 

You once thought you were a celiac, now you even have more reason to believe you are a celiac from your twin's diagnosis...even if you're dizygotes it's still a family member with it. Her diagnosis shouldn't make you question your own self-diagnosis now, it only strengthens it.

 

Even if you decided you wanted a straight out answer, ate gluten everyday for 3 months, then got a biopsy done, you could still be gluten intolerant without being a "gold-standard" celiac and have the biopsy come back normal.

 

Yes, headaches are a fairly common symptom for celiacs. But they're also pretty common to everyone.

Thanks. I guess I just wish I didn't have to eat gluten free. People hate going out to eat with me since we can only go to certain places. It really stinks. :(

 

And my sister wasn't officially diagnosed with Celiac, though.


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#9 mushroom

 
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Posted 22 April 2013 - 08:06 PM

Thanks. I guess I just wish I didn't have to eat gluten free. People hate going out to eat with me since we can only go to certain places. It really stinks. :(

 

And my sister wasn't officially diagnosed with Celiac, though.

 

We all think it would be nice if we didn't have to eat gluten free :)  but that's not the reality.  We have to deal with what is as much as possible, not what we wish it would be. 

 

It is not necessary for all celiac tests to be positive ~~ one is enough.  The tests all exist because not all of them will pick it up; some catch the disease earlier than others, there are a lot of variables involved in celiac testing.  If they were all required to be positive very few people would be diagnosed. 

 

And you do have another autoimmune disease... I think it is probably time to accept it for what it is :)   Now, if you noticed no improvement gluten free (totally) after three months, THEN you could re-evaluate.


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#10 cavernio

 
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Posted 23 April 2013 - 01:04 AM

I got a biopsy because I wanted to be treated seriously as a patient by doctors. I asked the GI, who was saying I should get a biopsy, multple times about other reasons why my blood tests could have shown up positive, and he dodged the question every time.


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#11 IrishHeart

 
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Posted 23 April 2013 - 04:38 AM

Thanks. I guess I just wish I didn't have to eat gluten free. People hate going out to eat with me since we can only go to certain places. It really stinks. :(

 

And my sister wasn't officially diagnosed with Celiac, though.

 

I use the app Find Me Gluten Free to find plenty of places to eat out. There are more options than you may think! and my WE friends (wheat eaters) and I can dine out together.  :) do not despair. 


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#12 IrishHeart

 
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Posted 23 April 2013 - 04:42 AM

I got a biopsy because I wanted to be treated seriously as a patient by doctors. I asked the GI, who was saying I should get a biopsy, multple times about other reasons why my blood tests could have shown up positive, and he dodged the question every time.

 

 

Crohn's and other inflammatory bowel diseases can sometimes raise the TTG levels, according to my GI, which is why he does a work up for all inflammatory bowel diseases when he suspects celiac, but blood work is not conclusive or symptoms are atypical. 


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#13 Chelsea_Lynne

 
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Posted 02 May 2013 - 01:36 PM

I just got a copy of my twin sister's bloodwork, and these are her results:

 

Anti-Endomysial: normal

Gliadin IGG: 47 HI

Gliadin IGA: normal

 

Do you think she has a good chance of actually having Celiac or no?


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