A Re-Test ...sigh

[RaRaMachine]

Hi all. I'm new here. Brief history: my daughter (4) had chronic mouth eczema. Tried elimination diets, with milk, then eggs. There was a bit of improvement with the milk, but it never went away. Then I researched gluten. As I researched it I realized I had many of the adult symptoms (sores that never heal, a "celiac rash on my bottom, thighs, and under arms, inability to loose weight (after my pregnancies ...I used to be very fit and in the Air Force!)

Sooooo, at the beginning of June we went gluten free. After only a week, my daughter was completely healed (although she's been having an outbreak since she started kindergarten ), and my sores were finally healing!

I had the blood test after being gluten-free for 8 days. It was negative. All was going fine being gluten-free until I passed blood (a lot) in my stool 2x's. I then started to see a gastologist. I started having some mystery swelling/bloating. I would swell 5" and gain 8lbs! It was debilitating! I've had an ultra sound, a CT scan, an x-ray, an endoscopy, & colonoscopy since. All come up picture perfect! My dr was boggled and frankly had lost confidence, so I switched to another dr and hospital.

New dr thinks I may have had false positives on my celiac tests. 8days gluten-free for the blood test and 4 months gluten-free for the biopsy. So per new dr's orders I Am on a high gluten diet for 2 weeks, for the blood and biopsy tests.

I'm only 5 days in and I've got huge boils and I'm breaking out again. . It's so painful. Now the odd thing.....I'm not bloating like as bad as I was before??? Wth?

These tests suck, but I know that every needle and, probe, & biopsy, is one I save my daughter from. That keeps me strong.

[nvsmom]

Welcome to the board.

 

Eating gluten for only two weeks might not be enough time to give you an accurate result. 6 weeks is usually the norm. When you get your results, if they are negative, I would compare them to the first result to look for changes.

 

That being said, two weeks might be enough time for a good biopsy. Make sure they take many samples; eight is a good number.

 

If you still end up with negative tests, you might want to consider non-celiac gluten intolerance (NCGI) which has all the same symptoms as celiac disease minus the villi damage (so blood tests and biopsies are negative). It sounds like you and your daughter definitely have a gluten intolerance, so I hope you will bothe continue with the gluten-free diet in the long run.

 

Best wishes.  

[emaegf]

I can save you a few weeks of torture and the gastrointestinal tests, you'll still need the blood work done though. Your blisters are characteristic of Dermatitis herpetiformis (DH) an autoimmune blistering disorder also a symptom some get with a Celiac.

 

You need to see a Dermatologist familiar with Celiac and DH and have a skin biopsy done to check for the presence of the antibodies for Celiac in the skin. That is where they collect with DH.  The test must be done 3 to 5 mm away from an active lesion (the blisters). That is then looked at under a microscope where the antibodies can be seen in the skin.

 

A skin biopsy is the key tool in confirming a diagnosis of DH. Doctors take a skin sample from the area next to a lesion and, using a fluorescent dye that highlights antibodies, look for the presence of IgA deposits. Skin biopsies of people with DH are almost always positive for IgA.

You need to have the sample looked at by someone who knows what their looking for or there can be an error in the reading also if the wrong sample is taken you'll have to have another done do to the first one being ruined. A proper sample does Not include part of the blister since the fluid from the blister can distort the antibodies under the microscope resulting in an inaccurate reading.

I've been through this many times before and the test being done wrong resulted in repeated testing. 


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Do some more research on DH on your own then take your findings to your doctor and get in to see a dermatologist asap.