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Should I Get Tested?

nallard

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nallard Newbie
nallard
Posted

Hello, I was hoping that someone here could offer my wife and I some help. My wife has been reluctant to get tested for Celiac disease largely because she's been steamrolled by her doctor who has insisted that what she has is IBS. I am admittedly not a doctor, but her symptoms only crop up when she accidentally eats gluten and they don't seem to fit with IBS. She has been gluten free for 2 years (after an elimination diet suggested that gluten was an issue) but sometimes something sneaks through by mistake. I have done some research and I think that she may, indeed, have Celiac but I was hoping for some guidance from people who really know this disease.

 

Her symptoms after eating gluten include:

 

Stomach cramps

Fogginess

Feeling tipsy (without alcohol)

Constipation alternating with a much more urgent need to go

Feeling like her body isn't attached to itself

Tooth sensitivity

Fatigue

Headaches

 

Additionally she recently tested positive for ANA which at least one study I found indicates might be a Celiac symptom. Her most recent bloodwork tested negative for Celiac, though as I mentioned she has been gluten free for about two years. Before she went gluten free she was diagnosed as anemic.

 

Should we press her doctor to look closer at Celiac (or find a new doctor)? From what I understand this involves eating gluten for a number of weeks to see if she tests positive.

 

She is really at the end of her rope and there are people in her life that essentially tell her that her symptoms are all in her head - Celiac or not, they clearly aren't. Thank you very much for any help you can give us.

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user001 Contributor
user001
Posted

Sounds like a lot of my symptoms. It might be best to find a better doctor. My doctor also tried to talk me out of getting tested, but I insisted and i was right. You are probably also right.  She will have to eat gluten for a period of time to have accurate results of course. I struggled with the idea of getting tested, but I decided it would be best to have an answer in case I had serious health problems ever.I personally think the gluten challenge is dangerous for someone who gets very sick from gluten. I have heard of others finding doctors that will diagnose by using genetic testing results and the fact that someone has symptoms when eating gluten, but no gluten challenge. Good luck!

nvsmom Community Regular
nvsmom
Posted

Welcome to the board.

 

IBS is just a group of symptoms and not really a diagnosis of anything (in my opinion).  There are many around here who had IBS symptoms which did resolve with the gluten-free diet.  Her symptoms are pretty common celiac and non-celiac gluten intolerance (NCGI)  symptoms, and if she is not 100% gluten-free, those symptoms will continue to reappear.

 

Because she is gluten-free already, teating for celiac disease could be difficult. Celiac tests are not accurate if you are gluten-free so she'll need to under go a gluten challenge of 1-2 slices of bread per day (or equivalent) in the 8-12 weeks prior to the blood tests.  When a celiac is gluten-free, those tests will eventually return to normal but in order to be diagnosed, she will unfortunately have to make herself sick for a few months. 

 

These are the blood tests to ask for. The more she gets done, the more accurate it will be.

  • tTG IgA and tTG IgG (anti-tissue transglutaminase) - the most common tests
  • DGP IgG and DGP IgA (deaminated gliadin peptide) - a newer test good for detecting early celiac disease
  • EMA IgA (anti-endomysial antibodies) - tends to detect more advanced damage, very similar to the tTG IgA
  • total serum IgA - control test
  • AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests

The endoscopic biopsy only requires a 2-4 week gluten challenge. Make sure at least 6 samples are taken.

 

Keep in mind that if her tests are positive, she'll be back to a gluten-free diet again, she'll just need to be more careful about it.  She can't make slip-ups.

 

If her test is negative, but she has issues with gluten, then she will still need to stay gluten-free without slip-ups... In the end I think it will come down to tightening up her diet some (if gluten is an issue for her).

 

Good luck with whatever she decides to do. Let us know how it goes.  :)

BlessedMommy Rising Star
BlessedMommy
Posted

It seems like the best bet is maybe to do the challenge for the biopsy, since it's a shorter challenge.

 

Unfortunately there are no good or easy diagnostic answers for people who are severely intolerant to gluten and already gluten free and don't have a formal DX. I could never survive a 12 week gluten challenge, so I opt to live 100% gluten free and treat my condition as celiac, but there are always lingering questions in my mind. I would like to know if I really have celiac, but I don't have the luxury of being able to find out. 

 

My gluten trial resulted in a trip to the hospital. 

 

My three recommendations for people who are thinking of a gluten trial is to not overdo the gluten and to get medical supervision and use common sense. 

GottaSki Mentor
GottaSki
Posted

Hello, I was hoping that someone here could offer my wife and I some help. My wife has been reluctant to get tested for Celiac disease largely because she's been steamrolled by her doctor who has insisted that what she has is IBS. I am admittedly not a doctor, but her symptoms only crop up when she accidentally eats gluten and they don't seem to fit with IBS. She has been gluten free for 2 years (after an elimination diet suggested that gluten was an issue) but sometimes something sneaks through by mistake. I have done some research and I think that she may, indeed, have Celiac but I was hoping for some guidance from people who really know this disease.

 

Her symptoms after eating gluten include:

 

Stomach cramps

Fogginess

Feeling tipsy (without alcohol)

Constipation alternating with a much more urgent need to go

Feeling like her body isn't attached to itself

Tooth sensitivity

Fatigue

Headaches

 

Additionally she recently tested positive for ANA which at least one study I found indicates might be a Celiac symptom. Her most recent bloodwork tested negative for Celiac, though as I mentioned she has been gluten free for about two years. Before she went gluten free she was diagnosed as anemic.

 

Should we press her doctor to look closer at Celiac (or find a new doctor)? From what I understand this involves eating gluten for a number of weeks to see if she tests positive.

 

She is really at the end of her rope and there are people in her life that essentially tell her that her symptoms are all in her head - Celiac or not, they clearly aren't. Thank you very much for any help you can give us.

 

Her symptoms are not in her head.  They very well may be in her gut.

 

I would vote for complete testing....I always do ;)

 

The reasons are many...but for your wife...finding the source and obtaining a diagnosis does a great deal to help take control of her health care.  It is unfortunate that so many of us are dismissed as stressed, hormonal, depressed, overworked, etc -- instead of running a simple blood panel.  I was told I was in perfect health because all the tests many doctors chose to run were all negative except for anemia for my entire life and low Vitamin D for three decades.  If I could talk to my younger self -- well, I can't -- what I can do is shout from the rooftop...do not let doctors, family or friends dismiss what is going on in your own body.  Demand testing continue until doctors find the reason for her symptoms, whether celiac or not.

 

Thank you for being her advocate...it makes all the difference to have someone in your corner when you simply have no fight left in you.

GFinDC Veteran
GFinDC
Posted

There may be new tests available in the future that won't require a months long gluten challenge.  So it might be better to wait a while on the testing.  The upshot of getting tested for her is a doctor will either say:

 

A: You have celiac disease and can't eat gluten ever.  And she would have to go  on a strict 100% gluten-free diet for life.

 

or

 

B: You don''t have celiac and I don't know why you get sick when eating gluten.  But you might want to stop eating it since it makes you sick.  We'll just call it IBS (I be stumped).

 

C:  Go ahead and eat all the gluten you want, the tests were negative so there's no chance your body is reacting to gluten.  Of course her body seems to disagree with him on that.  And the doctor doesn't have to live with the consequences or symptoms she has.

 

Either way your wife has symptoms that indicate possible damage to her body when she eats gluten.  So it isn't reasonable for her to keep eating it or letting little bits slip into her diet.  If it is undiagnosed celiac disease the immune reaction starts after exposure to gluten, and can last for weeks to months in some people.  Little bits of gluten are all it takes to kick the immune system into attack mode.  So an accidental exposure every couple weeks means her immune system is never going to stop attacking her body.  Ongoing damage to the body is what causes most of the bad health affects on people.  If you read some of the forum members signatures some of them have multiple auto-immune diseases after years of eating gluten before diagnosis.  A search on celiac related conditions or celiac associated conditions will bring up lists of AI's that celiacs have a higher risk of getting.

 

Possible future testing article:

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