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Should I Get Tested?
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This question is probably asked a lot. I'm new. I've not been feeling well and am almost sure it is something in my diet.

Here's a little history.

Aug. 2008 gastric bypass surgery

Dec. 2008 gallbladder removed

Soon after I had severe stomach pains which led my PCP to prescribe Prilosec for what she guessed was an ulcer.Never confirmed with scope or anything.

In November of 2009 I was diagnosed with bipolar disorder and have been on meds for that ever since.

My dr recently switched my prilosec to protonix because the prilosec was no longer working.

I have episodes of hypoglycemia usually after eating meals with a lot of carbs or sugar.

I have recently begun experiencing head and neck pain after eating meals with carbs. Example: This morning I ate a bowl of quick oats. Not 30 minutes later, neck pain. This has happened with other meals such as sandwiches, pastas, etc.

I've also had pretty bad dandruff for years. Nothing I've done topically seems to work. It flares up and gets really bad at times, but never goes away completely.

Back in May 2011 I was hospitalized with severe stomach pains to which they originally thought was constipation, but then decided to call an illeus (sp?). Basically they told me my small intestine quit working. So they withheld food and water for a couple days and the pain eventually went away.

I've just been googling my symptoms and keep coming back to gluten. Maybe I'm way off base here, but I am wondering if I should make an appointment with a gastroenterologist. I would just do a trial gluten free diet, but I've read that you need to consume gluten before testing for accurate results.

I've also got a son with autism who may have issues with gluten too, just from what I've read. He craves foods with gluten in them. His favorite food is saltine crackers.

So, I guess I'll make my point. In your opinion, would it be worth getting tested for celiac or gluten intolerance?

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Yes. If I were you, I would get tested.

There are many around here who have had problems similar to yours. gall bladder problems are very common as is hypoglycemia. It is usually the small intestine that is attacked in a celiac so your problems there could be linked...

Get tested soon. Test your son at the same time. And you are right, keep eating gluten until your testing is done.

Your family doctor can usually order the lab tests. I'm not sure about the endoscopic biopsy (if you go that route) since I never had one. Anyway, the most common blood tests to request are:

ttg IgA and ttg IgG

DGP Iga and DGP IgG

EMA IgA

total serum IgA

AGA IgA and AGA IgG (older tests)

There is approximately a 25% false negative test rate amoung celiacs, so if your tests come out negative you might want to do a strict gluten-free trial for 3 to 6 months (longer is better) to see if you have non-celiac gluten intolerance (NCGI). Unfortunately, a positive reaction to the gluten-free diet is the only way to diagnose a NCGI at the moment even though NCGI is much more common than celiac and every bit as nasty.

I would definitely put your son on a gluten-free diet when testing is done. A casein free diet could also be helpful. My oldest son, who has Aspergers, tested negative for celiac but I made him gluten-free and CF anyways. We've seen really noticeable improvements in his mood, concentration, and tolerance of stressful situations. He also has way less stomach aches and headaches and is gaining some weight. He had some improvements eating gluten-free, but he was even better after we cut out milk too. We just did it over 3 months so it didn't stress him out too much and he had time to settle into a new way of eating.

Best wishes with the testing. Hope you feel better soon.

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Thank you so much for your reply. I will be talking to our doctor about testing.

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Yes, it would be worth getting tested for celiac. If my son were autistic, I'd get him tested too. Oh wait...my son is an Aspie...and he does have celiac!

You don't need a gastroenterologist, a good family doctor can initiate the testing. What you need is a doctor who understands celiac and is aware of its many presentations, one who knows the full scale of tests that need doing:

Deamidated gliadin peptides IgA (DGP IgA)

Deamidated gliadin peptides IgG (DGP IgG)

Tissue Transglutaminase IgA (TtG IgA)

Tissue Transglutaminase IgG (TtG IgG)

anti-endomysial antibodies (anti-EMA)

TOTAL SERUM IgA (celiacs are often insufficient in this, and if you are insufficient ALL the IgA versions of tests are invalid...that's the only reason for this test, but it is IMPORTANT)

While you are waiting, you might want to be exploring some ways to change your diet. Paleo, primal, SCD, GAPS, all can be helpful though a little more restrictive than simply being gluten-free. Sounds like you might benefit greatly from a change, especially one that drops the starches and sugars. I know this is controversial, but some kids with autism have been seen to improve on a gluten-free diet. You might go into the topic for parents of celiac kids, or the "related disdorders" There are some discussions around here on the forum about it, here are a couple...you can use the search-box at the top of the screen to find more.

http://www.celiac.co...ism#entry851074

http://www.celiac.co...ge__hl__+autism

http://www.celiac.co... autism rising

Ahh...nvsmom...beat me to it, LOL! :P

Edited by beachbirdie
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I have a dr appt on Friday afternoon for myself and my two oldest children. Hopefully our dr will listen

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    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
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