Help with Labs - PLS Help me help my child
 

Hi, all!

I’m new, and I am desperate! My 14 yo daughter has been sick since October with a mystery illness. She has been tested for everything under the sun. No one has been of any help, and recently we were told she might have Chronic Fatigue Syndrome. She has been out of school since October, attending only half days since January. EXTREME fatigue, recurring mystery infections, non-stop headaches, joint pain (hip), loss of appetite, random stomach aches and a general sense of feeling like crap plague her. She was negative for mono, CMV, Lyme, clean head MRI, chest x-ray. Recently, a Doc we saw for CFS determined she is low in iron (CBC had been normal, but specific iron tests are low) and extremely vitamin D deficient.

She had a Celiac Panel and I got the results today – these were ran by a Rheumatologist. I asked her to add this to other testing she was doing because of the recurring stomach aches and why the heck not! The doc said the values aren’t normal, but couldn’t tell me anything else and our appointment with a GI is a long way off. Can anyone tell me if these labs point to Celiac or Gluten sensitivity? My child has been sick for soooooo long! If this is gluten, I’m off to clean the pantry and see what I can do to help her feel better! TIA for whatever you can tell me. I’ve looked online all day and cannot find a clear answer 

ANTIGLIADIAN IGA RANGE: 0-6.0 Her Value: 1.1
ANTIGLIADIAN IGG RANGE: 0-4.8 Her Value: 5.3
ENDOMYSIAL INDIR IGA Negative
TISSUE TRANSGLUT IGA RANGE: 0-10.2 Her Value: 0.3
TOTAL IGA by NEPHELO RANGE: 44-441 Her Value: 164

Anything you can do to help me make sense of these numbers, I’d really appreciate! THANK YOU!

Maybe I should also add that since second grade she has had on again / off again stomach pains that the PCP thought were possibly abdominal migraines or constipation. She oddly developed asthma 2 years ago after a bout with Pneumonia. She also has migraines.

Thanks -- we're desperate to find an answer for her -- she is half the child she used to be, she is so fatigued and fighting a new virus every other week. She's developed chronic sinusitis since October :(

What comes to mind is the old childhood condition... "Iron Poor Blood". I had that when I was a child and was like a limp rag. Check out this product... Floridex Liquid Iron. Herbal and taste really good. Kinda expensive but I love it...several different formulas and available at Health Food stores and on line of course... Best of the best to you all... (((hugs)))

Anyone--
 

--not just children, with malabsorption issues such as low iron levels and Vitamin D deficiency (though, as regards iron, the possibility of heavy menstrual periods in post-menarche women may be a factor) should be titred up for celiac, as malabsorption of nutrients in the small intestine is the hallmark of the condition.

The tests results are not entirely normal--the our of range test, the antigliadin IgG, is the most sensitive but the least specific for celiac; it tends to be the first test to become abnormal, though, in those that are gluten sensitive. The transglutaminase tests tend to be the most specific as regards degree of damage to the intestinal villi (wouldn't have been a bad idea to get a transglutaminase IgG level as well).

Still, this is a sign to cut out gluten. Doing that cannot hurt--no one NEEDS gluten to live--and might well help, although don't expect any improvement to be dramatic.

The gold standard to diagnose celiac is still evidence of villious atrophy on endoscopy. But often the damage is patchy or spotty so it is important, for samples to be taken from many parts of the intestine if the test is done (there is a tendency for some gastroenterologists to just sample the upper part of the small intestine in just a few places).

Welcome Need An Answer. :Tip-Hat:

Thanks for your response :)

Her cycles are light, so I think I can rule that out as contributing to the iron issue.

I wonder if the celiac panel was as accurate as it could be -- this was taken in January - 5 months into her illness. After a 20 pound weight loss when she is eating only very little here and there. I wonder if its an accurate picture? Does any abnormal reading point to gluten issue with or without celiac?

You indicate not to expect dramatic improvements if we drop gluten. What does that mean? If gluten is the root of her issues, and we drop it, what should I expect? When people go gluten-free how long does it take until they think they are seeing a difference? Weeks? Months? Years?

Thanks!

Hi Need_An_Answer

I suggest that you and your daughter see a qualified dietitian about this. Dietitians are evidence-based health professionals who specialise in working with clients who have food issues.

I think that it would be a good idea if you took along copies of the results of the various clinical investigations that your daughter has had.

A dietitian should be able to interpret them and (depending) suggest ways in which what your daughter eats could improve her health.

The IgG anti-gliadin test--
 

--is the most sensitive but least specific of the celiac panel tests, but it is often the first test to turn "out of range", and is often the only sign of gluten problems in those who have some degree of sensitivity but may not (yet) have frank celiac.

The problem is that gluten sensitivity has many different presentations--for some people the first signs are not gastrointestinal but neurologic.

What I meant by "don't expect dramatic improvement" is that it takes time for this damage to occur, so it takes time for it to heal, especially if there is villious atrophy causing malabsorption. This is not to say that some people don't feel better fairly quickly, but generally this is a gradual process.

You need to get up to speed on gluten issues quickly--I recommend as a good first stop The Gluten File, put together by the semi-famous jccglutenfree (AKA Cara) and easily linked to right in this forum:

https://sites.google.com/site/jccglutenfree/

I think this is still the single most comprehensive database on the subject, as it brings in papers and studies across the spectrum of gluten sensitivity. Cara has been maintaining it for years and I give her a great amount of the credit a decade or more back for bringing the whole issue out of the doldrums and into public awareness.