Negative Biopsy Results.what Now?

[jopan]

 My 13 yr old son has just been told the results of his
biopsy were negative, his blood test results were negative, but he has low
IAg, he is still suffering from weight loss, fatigue,nausea, constant
burping, dry lips ,mouth ulcers, the list is endless. His gastro consultant
noted smooth stomach wall with flattened villi when they performed biopsy, and felt this
indicated celiacs, but after biopsy results he has discharged my son to a
peadiatrician ,who thinks my son is suffering from chronic fatigue. Has
anyone any advice because we are desperately trying to find a solution
.Thanks

[BlessedMommy]

Why was the biopsy considered negative if the villi were flattened and smooth?

[Luv-my-kidz]

I would get a second opinion. Hope he feels better soon!

[cyclinglady]

Get all copies of all lab reports. You need to find out how many biopsies (tissue samples) were taken during the endoscopy and if a complete celiac blood panel was run. Post the results. Someone might be able to help you.

BleesedMommy is right, something is off and I agree that a second opinion may be in order!

Please do not give up!

[BlessedMommy]

I re-read your post and noted that he has low IGA. That means that all the IGA tests will be invalid for them. Did they run a number of IGG tests?

[etbtbfs]

Has he been tested for endocrine autoimmunity? Autoimmunity against the thyroid or pancreas seem to be the most common types. Some docs are clueless about this.

[nvsmom]

I agree that it sounds odd.    Get copies of his biopsy, tTG IgG, and DGP IgG test results - those are the only tests that will tell you anything in his situation.... A second opinion might be a good idea.

 

Even the fact that he is IgA deficient would point (a bit) to celiac disease.  1 in 20 celiacs are IgA deficient whereas 1 in 700 are in the regular population.

 

This report discusses the testing, beginning on page 7: Open Original Shared Link

 

If you run out of testing options, try the gluten-free diet for 6 months. Sometimes we have to be proactive when doctors can't figure it out.  It may well be celiac disease, in which case he will continue to be ill if his diet is not changed.  No one needs gluten in their diet, it is just inconvenient to eat gluten-free - that's all.  

 

Don't make him gluten-free until testing is all done though.  Celiacs will eventually produce false negatives after a time (weeks to months to years) on the gluten-free diet.

 

Best wishes.

[jopan]

Why was the biopsy considered negative if the villi were flattened and smooth?

Thankyou to everyone who has taken the time to read my post and reply.I don't know why the biopsy was considered negative, and have never heard of the test other posts reccomended , but will definately ask my sons doctor about them. Have never used a forum previously and have know idea whether I am supposed ro reply to everyone individually or not, so apologise in advance if I have got it wrong Thanks 

[jopan]

Has he been tested for endocrine autoimmunity? Autoimmunity against the thyroid or pancreas seem to be the most common types. Some docs are clueless about this.

Hi , my son has been tested  for endocrine autoimmune and the results were normal, but I forgot to mentio that he also has vitiligo, and I have auto immune problems,Rhuematoid arthritis and an under active thyroid.Thankyou

[LauraTX]

If your son's total IgA is low, get him to an immunologist right away.  A possible immunodeficiency can cause many of the symptoms you describe, but only an expert would be able to tell what exactly is going on.