Advice on diagnosis

Hi to all!  This is my first post and I have big questions.  The problem all started with my son.  I suspect he has some sort of gluten sensitivity because he displays Autistic behaviors but does not have enough to clearly label him as Autistic.  My husband and I are meeting with a holistic minded psychologist and she suggests trying a gluten-free lifestyle.  Interestingly enough, when I was pregnant with him, my stomach issues began starting with constant diarhea.  This didn't stop until a year after he was born.  Now I am having cramping and gassy feelings as well as very full feelings even if I didn't eat very much.  I've had my blood tested (just a routine test) and came back deficient in vitamin D and low white blood cell counts.  The doctor (per my request only) is now testing me for celiac disease.  I was in the hospial in October and was very sick.  I read that celiac disease can come up all of a sudden from stress on the body.  I've done a lot of research and feel like I will be very confused if my recent blood work shows no celiac possibilities.  It just seems like that is what my body is saying but I can't be sure.  I guess my question is this....what if my tests come back negative?  What else could possibly be wrong with me and should we try this drastic lifestyle change with no real 'reason' or diagnosis besides my son's needs of course?

I'm having nightmares about this....crazy as that may be.   I feel like if the tests come back negative then people might think I'm silly for going to a difficult lifestyle on a whim.  Am I making any sense?   

First off...until the tests come back, don't project "what if's" on the outcome.  More than likely, it is Celiac disease which is very treatable through strict adherance to the diet.  Many of your symptoms sound very much like a lot of us Celiacs.  Yes, stress can bring it on and it can bring on numerous symptoms not just diahrea and/or gas.  THIS IS IMPORTANT:  If your blood test comes back positive, you MUST continue to eat wheat until they run the final gold standard of the diagnosis which is the endoscopy and biopsy of your small intestine.  If your blood tests don't come back fully negative, (there are 3 tests) some can be negative, some positive, ask the doctor, no... insist that he do the endoscopy for confirmation if he brushes it off.  Not all tests come back positive because not all labs are perfect etc.  The reason you have to continue to eat wheat until the endoscopy is performed is because if you stop eating wheat, your intestines begin to heal and the results of your test may be skewed and not come out properly.  That said, try to get it done as soon as possible.  IF your doctor balks at doing the endoscopy, (some of them do) go to a gastroenterologist who knows about Celiac disease.  Ask before you go if he/she is familiar with it, don't waste your or their time if they are not familiar with it.

It is unfortunate, but because Celiac is a hidden epidemic, (1/133 people have it and don't know it,) you must take charge of your diagnosis to make sure all is right.  Now, for your son, take him to a pediatric gastroenterologist for the testing.  Don't let your doctors brush it off as if it is no big deal.  Celiac disease can be a very big deal if it is not diagnosed timely or treated properly.

I hope I haven't scared you.  I have Celiac disease, and I work with Celiacs every day.  Getting through to the final diagnosis is the hardest part...almost...the diet is well let's just wait for your diagnosis...and then we'll go there.  Take care, Elizabeth

Thank you so much Elizabeth.  I guess I'm just worrying that I am a hypochondriac!  But, I know something isn't right with my tummy.  And as for my son, we told the psychologist he craves bread and she said many kids like him tend to crave what is harming their bodies.  Poor little guy.  He has that distended hard tummy and I feel action must be taken a.s.a.p...with or without my diagnosis.  It would be easier if mommy had to do it too.  Sigh.  What a road we might have to travel.  So much more I could say....but I'll save it for later!  It is 10:40 here and I've got to get some shut eye!  :) 

Melissa

When my DD started having problems she  was only 20 months old but was loosing weight quickly, even though she ate more than anyone else in our family. We had her tested and when it came back positive we took her off of gluten right away.  WE saw improvements the same week.  Later we were able to travel and visit with a pediatric GI. We had to put her back on gluten for 8 weeks before hand and were so sad to see her go back to how she was before, we decided not to do the endoscopy because of her age and because we already could see the difference with her diet.  I too got the a blood test done which also came back positive and went off of gluten ( i had no known symptoms), and started feeling better then I ever had.  I had not even known I felt yucky because I always felt that way.  I did not do an endoscopy either, feeeling better was good enough for me.  Good Luck, and I hope your little one feels better soon!

Thank you runningafter3.  If the blood work comes back positive then next week we start a new lifestyle.  I'll be writing more in this forum if that is the case.     Thanks to you and Elizabeth for the support. 

Perhaps I'll talk to you soon!

Melissa

WAIT!  Do NOT change your diet after your blood test.  The blood test is only a screening.  The actual test for Celiac disease is the scope and biopsy. 

If you stop eating glunten between the two it can result in a false negative in the scope.  Your doctor will explain this also, but you must not stop eating gluten until the doctor is done all testing.