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Friend With Possible Celiac?


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9 replies to this topic

#1 techyie

 
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Posted 03 September 2012 - 04:01 PM

This is a tough discussion. I am dating someone new. She originally told me she was celiac, which is fine. I helped her, always let her choose where to eat out, etc. First issue is that she was never diagnosed. Her aunt told her she had it, so she assumed she had it as well. (This diagnostic was about 2 years ago). She also says she's allergic to artificial sweeteners (splenda, etc.) (also, self diagnosed).

So, all fine and dandy until I realize that she's been eating gluten items without realizing with no reaction. Is this possible? Went to a japanese restaurant and she ordered some miso soup. This happened twice before she realized (days later while reading online) that Miso soup had gluten in it. Also, at the same japanese restaurant, she has deep-fried sushi. She says it's safe, albeit I'm not sure with how. Another time we went to Red Lobster and had some shrimp, that later on I looked up online and realized that it also had gluten in it.

The problem is that she is suddenly taking things to an extreme. She read online something about latex-allergy/wheat cross-reactions, so now she's forsaken most fruits, even though she's eaten them every day for breakfast.

To me it kind of sounds like a hypochondria. She's reading things and assuming everything. But I could be wrong. Is it possible to eat gluten items (as above) without having any reaction with celiac? Also, as a celiac, can you touch gluten items (wheat/flour) without a reaction? Assuming you don't ingest it.

Thank you so much for your assistance.
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#2 psawyer

 
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Posted 03 September 2012 - 04:10 PM

Also, as a celiac, can you touch gluten items (wheat/flour) without a reaction? Assuming you don't ingest it.

I certainly can. For more than ten years, my wife and I ran a retail store selling pet food and supplies. Every dog that came in was offered a biscuit. The first ingredient listed was wheat flour. I would touch these many times per day--and always wash my hands afterwards. The gluten molecule is a long complex protein which can not be absorbed through skin.

If you have an allergy to wheat, that would be a different situation. Celiac disease and wheat allergy are distinct conditions. You can have one without the other. Some people have both. The majority of the population have neither.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#3 IrishHeart

 
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Posted 03 September 2012 - 04:29 PM

In addition to what Peter has told you, many people with celiac do not have gastrointestinal symptoms at all. They have other, extra-intestinal symptoms though, like hives, neurological symptoms, behavioral problems, urinary tract issues, reproductive issues, etc. Celiac is a multi-factorial disease affecting may body systems.

Here is the part that is most important: you say her "aunt told her she has celiac"---- How is that a diagnosis?

She should be tested properly before she continues to think so many things "might" make her ill.

She could be eliminating perfectly good foods for no good reason.
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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


#4 eatmeat4good

 
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Posted 03 September 2012 - 05:02 PM

Not all of us are "properly" diagnosed with Celiac disease. If she was feeling ill and exhibiting the symptoms of Celiac her aunt may have "helped" her by telling her about Celiac. I told my sister and she has a child with symptoms who didn't test positive but feels better off of wheat. Therefore, that child is self-diagnosed because her aunt told her about it. Wheat can still be a legitimate issue if she hasn't tested positive but finds she feels better off of wheat. Some people are self-diagnosed because their Dr. won't test them, or doesn't believe the symptoms are consistent with what they believe to be classic Celiac. There is also gluten intolerance that isn't detectable by testing.

If she is eliminating fruits I wonder if she is feeling badly and looking for a cause? The gluten she has been ingesting could be the cause if she is indeed Celiac. As to whether she would be able to eat it and not have a "reaction" well, yes, she could. If she had been fairly consistently gluten free, the antibodies would have subsided and she may not react to gluten as she did before. This is normally a very good thing for a Celiac. However, it can be dangerous when individuals choose to assume that it means they are no longer Celiac or no longer sensitive to wheat. The damage can happen without overt symptoms. It used to be that Dr.'s thought children outgrew Celiac for that very reason, they were no longer reacting and appeared to be able to eat it normally. Until later they learned these are the children who grew up to have the lymphoma's and cancers and auto-immune diseases associated with Celiac disease when it is not controlled by a gluten free diet.

I think it is wonderful that she has a friend like you who is willing to help her figure this out and who wants to understand. Hypochondria is extremely rare. Normally people who appear to be hypochondriac are seeking answers to why they do not feel good. I would encourage you to continue to be supportive of her and maybe do some talking about how it came to be that her aunt thought she had Celiac. Does it run in the family? Is she willing to get tested? Many people opt not to test knowing they have to ingest gluten for a period of time in order to have a chance to test positive.

Maybe she just needs help identifying gluten in foods and eliminating it and the other intolerances will resolve once she is truly gluten free. Obviously she is looking for answers too. Maybe this will be a good opportunity for her to either get diagnosed or learn to be completely gluten free. Feel free to invite her here. Thanks for caring enough to write us and ask questions!
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
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#5 techyie

 
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Posted 04 September 2012 - 03:53 AM

I apologize about the Aunt thing. The Aunt actually said that the Aunt had celiac, not the girl in question in the above discussions.
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#6 IrishHeart

 
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Posted 04 September 2012 - 04:06 AM

Okay, well, now that I see THIS post, this is a totally different issue. I think I understand what you are asking now. But please clarify if I'm still not clear.

You are saying:
(1)the aunt told her that she has celiac and
(2) therefore, your friend assumes that she also has has it-- yet
(3) she has been consuming gluten all along ....but has no symptoms from it.

Is this correct?

It is quite possible your friend has celiac or a gluten intolerance or any number of food intolerances or allergies, but if --as you say---she is not exhibiting any signs, not even extra-intestinal ones, what are you asking us then?

If she is "faking it"? None of can tell you that. We have no clue.

I suggested she see a doctor for testing (if she can), to see if it is a wheat allergy or celiac (or any other food allergies )before she assumes these foods are actually a problem for her.

I, personally, would never call anyone a hypochondriac as I do not walk in his/her shoes. Having suffered dozens of seemingly inexplicable symptoms myself before diagnosis, I am sure some may have wondered that about me.

If she has been consuming gluten all along, maybe she could go get a celiac panel done? Just a thought.

Yes, it is true that many of us DO see gluten intolerance symptoms in our relatives and suggest to them they may have it too.

However, if--- as you say--- she has been eating all these foods (wheat, fruits, etc.) all along without any issues, then I am not sure why she presumes she has celiac or other intolerances in the first place. Just because something "says so" on the internet does not always make it true.

Did you ask her why she thinks these things ---when she eats them and feels fine?
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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


#7 Adalaide

 
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Posted 04 September 2012 - 08:13 AM

I think a few different things are possible. First, there are many people who have celiac and don't take their disease seriously at first then realize that they need to and knock off the crap. Symptoms can vary widely from literally none at all to bedridden for weeks at a time from a single seemingly minor accident with our food. It is possible that she simply has crossed that bridge into being a grown up and has begun to take her health seriously for the first time.

Then, there is the other possibility which I'll catch hell for saying but here it is... maybe she's just a hypochondriac. Maybe she craves attention. Maybe she just thinks she has every disease she reads about online or that every family member has. Maybe she's just a little bit off in that respect and maybe it warrants a discussion with her doctor.

Now before someone goes all crazy on me... I self-diagnosed myself as allergic to my husband's cat. Why? Because whenever it touches me I break out in hives. I'm pretty sure I don't need to shell out money to a doctor to state the obvious. Now if your gluten-free has ever had symptoms of celiac or a gluten intolerance and they cleared up gluten free (although it may be hard to say this has happened since it sounds like she hasn't ever actually BEEN gluten free) then it's fair to say she is likely gluten intolerant. If she never exhibited symptoms but was just like "omg I could have that too" and jumped on the fad diet bandwagon, I'm sorry, but she's simply a hypochondriac. And I'll take the flak for saying so. My point is, it's important to find out how she came to this conclusion besides a simple my aunt has it so I must too statement.
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#8 IrishHeart

 
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Posted 04 September 2012 - 09:24 AM

My point is, it's important to find out how she came to this conclusion besides a simple my aunt has it so I must too statement.


I agree -- and it would be different if she were obviously sickly or had other symptoms and was unable to afford testing and did better on a gluten free diet.

This is simply not the case here. She is neither gluten free nor having symptoms that he can tell, so I am not sure what the point is.
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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


#9 bartfull

 
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Posted 04 September 2012 - 09:55 AM

It's hard to tell, but I MIGHT be that she hasn't been feeling quite right and decided to try gluten-free to see if it helped. Without being scrupulous about her diet of course she has been eating gluten and maybe not realizing it. So she still doesn't feel quite right and is looking for other reasons (the latex allergy).

The thing is, a lot of celiac symptoms are things you would never associate with celiac. Things like insomnia, rashes, brain fog, heart palpitations, and a host of other sometimes vague symptoms. If she just plain doesn't feel good and is trying to find the reason so she can fix it, that is a good thing.

She needs to come here and learn about reading labels and cross contamination. Now that you have written about her, you may be afraid she will recognize you and herself. You could send her to celiac.org instead, or even better yet, ask that this thread be deleted. Just tell her you've been doing some research and found this site and it appears to have the best information (it does) and have her sign up and read. It may seem sneaky, but you are trying to help her and there's nothing wrong with that. And if she learns enough to start taking the gluten-free diet seriously, and if it helps her to feel better, you will be her hero.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#10 eatmeat4good

 
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Posted 04 September 2012 - 05:05 PM

I apologize about the Aunt thing. The Aunt actually said that the Aunt had celiac, not the girl in question in the above discussions.


Hey, no offense taken about the Aunt thing at all! I just wanted to let you know that us Aunts can get pretty pushy with our nieces if we think they are Celiac! Well intentioned of course, since it is hereditary. :) Wish you luck, feel free to ask more questions when you have them.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates




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