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Cara in Boston

Member Since 03 Feb 2011
Offline Last Active Dec 07 2014 04:22 AM

Posts I've Made

In Topic: 7 Year Old, Symptoms And Negative Blood Test

05 December 2014 - 06:20 AM

Again, even if the blood tests are still negative, you have nothing to lose by trying the diet.  Give it three months and see if you see improvement.  Also, Celiac damage can cause people to be (temporarily) lactose intolerant.  This usually goes away when the intestines have had a chance to heal.

In Topic: 7 Year Old, Symptoms And Negative Blood Test

22 November 2014 - 12:02 PM

My son was negative on the most common Celiac blood tests but was positive on the two that dealt with IgG (rather than IgA).  If he had not been given the complete panel of tests, we would have missed it.  He also had no classic symptoms.  The doctors were puzzled, but we got our answer when he had a "highly positive" biopsy after an endoscopy.  His symptom (erratic behavior changes) went away within days of being gluten free - it was amazing.


Your child has a lot of the classic symptoms and it looks like you only got a few of the possible blood tests.  


If your doctor does not want to test further, you can always just try the diet and see if it works.  Our doctor considers that the "final test" for kids anyway, since the other tests are not always accurate with children.  If you see improvement, stick with it.

In Topic: New And Conflicted

31 October 2014 - 05:28 AM

A positive blood test is a positive blood test.  That the endoscopy was "not suggestive" does not rule out Celiac (the scope can only confirm it).    Many doctors want to wait until there measurable damage before starting the diet.  If your daughter is already having symptoms, why wait.   Yes, the diet is not easy . . . but it sounds like you already know it is necessary.  


All first degree relative should also be tested, regardless of symptoms.  


I have read that lactose malabsorption can be a "symptom" of celiac (due to damage) and that after a few weeks of being gluten free (different for everyone) you may be able to start adding dairy products back into her diet.

In Topic: Trying To Figure Out My 4 Year Old's Joint Pain/body Pain Issues

20 October 2014 - 11:53 AM

I felt like our lyme diagnosis journey was VERY similar to our Celiac diagnosis journey.  Odd/conflicting blood test results, un-informed doctors, lots of "evidence" but some doctors rigidly sticking to outdated information.  In fact, if I hadn't already been through it with his Celiac, I probably wouldn't have thought to even question anything the doctors told me.

In Topic: Is This A Huge Issue?

17 October 2014 - 04:53 AM

You already have enough information (positive blood test, positive response to diet) to know you have celiac Disease.  If your doctor agrees, have it put "officially" in your medical file. This will only be important if you are hospitalized and require a special diet (or enter the military or get put in prison?)  Other than that, you are 100% in control of what you eat so you don't need anything "official"


I did push for further testing for my child because he has years of school, summer camps, college dorms, etc. that might require a doctors diagnosis in order to accommodate a special diet request.


Your first degree relatives should all be tested.  Any future kids should be tested every couple of years, regardless of symptoms.  An "official" diagnosis could be helpful here, in case doctors don't see a "need" to test your children.


Also keep in mind that you could do the challenge, have the endoscopy, and it could still be negative.  This would not rule out Celiac . . . it would only mean that damage was not found.  A biopsy can confirm it, but not rule it out.