ANYONES ADVICE WOULD HELP! ANYONE! PLEASE

[maceroni]

Hi, im new here!
for the record I AM eating gluten now, I have been since April
I've been having many problems with my stomach.  Constipation,stomach ache after each time i eat, bloating , and I lost some weight.
I am a 13 year old girl, 5'4 and right now I weigh about 94lbs. 
In around February I weighed 81lbs, which means I lost about 12 lbs in the last 6 months.  I was also experiencing pretty bad constipation despite my daily running and vegetarian/high fiber diet and loads of water.  Me and my mom figured we would give a gluten free diet a try.
I went gluten free for 20 days.  In that time I gained about 8lbs.  I was feeling better at first, but my stomach aches were still there.  I ended up going to a pediatrician to get a blood test to ensure it was celiacs.  She said that even thoigh I hadnt eaten gluten, the blood test would still be accurate.  It came back negative.  I was given a prescription for Miralax and at my follow up appointment I was told to eat gluten again and was prescribed dulcolax along with miralax. 
I've been eating gluten since half way through april and I have gained about 6 lbs still, so that might mean its not gluten problem? And since i had been eating it two months i got another blood test which came back negative again.
My first blood test from April is a bit confusing to us.  I had a CBC in April and just a celiac test in June.  Here are my celiac results in comparison from not eating to eating it:
April(no gluten): Tissue Transglutaminade AB IGA: 0. 8 (ref range: 0. 0-3. 9)
IgA: 236 (ref range 80-450)
Other things to note were low iron, high lymphocytes(about 5 above the highest for "normal") Low White blood count, and low glucose. 

June result: Tissue Transglutaminase Ab IGA: 0. 9 (ref range-0. 0-3. 9)
IgA: 189 (ref range- 80-450)
So from no gluten to eating it my Transglutaminase went up SLIGHTLY and my IgA went down a bit.  They still all were in the range of normal.

Still have stomach aches, still am severely constipated(according to multiple xrays) still am bloated all the time, and as prescribed by my pediatrician I take 2 doses of miralax, 2 colace, and 2 dulcolax daily.  For about 2 months now.  Miralax longer.

I will see a gastroenteroligist sometime hopefully this month but i just want some input from celiacs or intolerants.  Does this sound like a celiac/intolerant case?
Im very confused.  My pediatrician said i may get an endoscopy and if all is normal possibly IBS, but ive heard over half the time IBS is really celiacs!
Any iput would be great, sorry for such a long story!!  :-o

[the sensible celiac]

Hi Maceroni,

I'm very sorry that you are having a difficult time right now.  I do think you are definitely doing the right thing by staying actively involved in your diagnosis and treatment, and I expect this will lead to a resolution eventually.

While blood tests for autoimmune markers of celiac disease are generally conclusive if the results are positive, they also do not indicate the absence of celiac disease when they are negative, this is doubly true if the patient has been avoiding gluten recently.  So the fact that your blood tests were negative for celiac-related autoimmune markers is not conclusive.  In other words these blood tests often produce false negatives.

One way that you might be able to conclusively rule out celiac disease is by means of genetic testing.  If you do not have the genes that make it possible to develop celiac disease, then you do not have celiac disease. Here is a link to a PDF file about genetic testing for celiac disease.

A tissue biopsy of small intestine tissue obtained by means of endoscopy is still considered the gold standard for celiac diagnosis.  When the villi are observed and found to be missing, too short, or blunted this is considered proof of celiac disease.

In the meantime you seem to be suffering terribly from constipation.  These are my suggestions for that.

• Avoid dairy foods
• Eat more vegetables and fruit, fresh if possible
• Drink more water
• Walk at least 1 mile every day, if you have the energy

All of these things promote good intestinal function.  Avoiding dairy might have a dramatic effect if you are now drinking lots of milk or eating lots of cheese.  If avoiding dairy does seem to make a very big difference you may be lactose intolerant.  There are enzyme supplements for lactose intolerance that work very well and have no harmful side effects.

I hope things get better for you really soon.  You deserve congratulations for taking such an active and well informed role in your health care.  Good luck!

Steve

[Sharon]

There's a relatively new book out that I think talks about all this stuff in a fairly clear and straightforward manner.  It's called Healthier Without Wheat by Dr. Stephen Wangen, who was first diagnosed with IBS himself, later got to the right diagnosis of celiac disease.  He runs an IBS treatment center in Seattle, but tests for food allerges, celiac, etc.

After I went off gluten and was immediately much better, I then began to realize I probably had other food allergies and so was tested to identify those too.  Some were things I never would have guessed.  I know that even now if I eat one of those other foods I will get the same kinds of symptoms as if I had eaten gluten.  So it seems to me you could have a problem with the gluten and other foods as well.

Anyway, good luck.  It's a pretty frustrating journey until you get a little farther along.

Sharon

[acjeff]

I have autonomic neuropathy from my celiac going undiagnosed for so long. This causes constipation, passing out, all sorts of fun things...as far as the constipation goes, coconut milk seems to help me a lot. And its quite good for weight gain. If you have a bowel motility problem (in my case there is nerve damage in the bowel which makes it hard for the muscles there to push stuff through) then eating a high fiber diet can actually make you more constipated because the bowel simply lacks the strength to get the heavy fiber stuff squeezed  through there. If that is the problem, a higher fat, low insoluable fiber diet and a non bulking laxative-I use Lactulose (no kin to lactose), which also encourages the growth of the "good" bowel bacteria-can clear up the constipation. Hopefully your new doc will do a motility study and see how the plumbing is working. A neurology work up may also be in order, since constipation is a symptom of many neurological issues. IBS itself is a form of dysautonomia, which may have many causes.
more about dysautonomia
http://www.ndrf.org/
The full fat canned coconut milk is usually in the Asian foods section of the grocery store if you want to give it a try. Other folks with my condition like avocado, cashew butter...
About neuropathy:
http://www.mayoclinic.com/health/autonomic-neuropathy/DS00544

[maceroni]

Thanks everyone, all big help!!! I'm going in this week, we'll see how it goes!

[the sensible celiac]

Please let us know what you find out.