Enterolab Vs "traditional" Testing

[trying4faith]

Hi everyone,

My Summary:

1st blood test for me: positive gliadin only

2nd blood test for me after gluten-free 2.5 weeks: all negative

Endoscopy: inconclusive, possible early onset of celiac disease

gluten-free for 2 months now

Symptoms return after eating pork, red meat - have not retested gluten (afraid)

Awaiting results from Enterolab

My Son:

Severely hypotonic (since birth)

A "clinical" diagnosis of SMA (not genetic)

Severe motility issues (takes Miralax daily)

Failure to thrive - has not gained weight since he turned one

He will be three next month

1st blood test: all negative

No endoscopy - too afraid to put him through this

HLA-DQB1*0201, 0602

Fecal Antigliadin IgA 119 (< 10 norm)

Fecal An. Transglutaminase IgA 93 (< 10 norm)

Fecal Fat 96 (<300 norm)

Casein 115 (< 10 norm)

We are overwhelmed right now. The pediatrician says there is no value in the gene testing or the fecal studies and is suspicious of anyone running a lab off the Internet.

My GI said the same and suggested I stay on a gluten-free diet if it makes me feel better.

We are both going to Duke University Hospital for a second opinion. Any doctor recommendations for Cary/Raleigh NC are appreciated (a good pediatrician and general practitioner is needed, not a Univ. Hospital doc).

Right now, I don't know what to believe, who to believe, and an so overwhelmed I can hardly think straight. All I know is I'm still intermittently having symptoms (and I'm very careful) and he is wasting away before us and the next step is a feeding tube.

Has anyone had a negative blood test but still has celiac disease? The doctors - my GI, the family GP (she's actually a nurse practitioner), and the pediatric GI doc at UNC have all said if the bloodwork is negative, you don't have it. They tell me, you have IBS. They say regarding my son, it could be related to his SMA.

I don't believe any of that because I've never had IBS and my GI symptoms are not stress-related. My son had no weight gain problems when he was on Alimentum and baby food (which he won't eat now - who can blame him). Only after he went on solids did his growth stop - completely. He's gained some height, but no weight and looks emaciated.

Can my ingestion of gluten while I was pregnant have started harming him then?

Should we cut out gluten AND casein for him? What on earth will I feed him that has protein and fat?

I feel like I'm drowning and the medical professionals are throwing me weighted life-preservers.

Please, please help.

[KaitiUSA]

Enterolabs are not very widely accepted by the medical community but in my opinion are very good. (some doctors do accept it though)

Gene testing is very important. 98% of celiacs have the DQ2 or DQ8 gene. I think gene testing is essential.

What tests did you have done? Alot of blood tests ordered are not the full celiac panel with the tTG and EMA. These 2 are the most specific blood tests you can get for celiac. If one of them is positive then you have celiac...the false positive rate is slim to none. If all the tests are not ordered they have a 50% chance of missing a diagnosis.

This is what you should be tested for:

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

There are only a handful of labs experienced in the US in reading celiac tests. One is Prometheus, where I had mine done. They also do celiac gene testing. They will do all those tests listed above as well. Because of my blood tests being high and me having one of the main genes my doctor didn't even want a biopsy done on me..he gave me an official diagnosis without one.

If the Enterolab on your sons test came back that high then I would put him on a gluten free diet and see how he responds.

I would definitely take seriously what the Enterolab proved.

Hang in there

[stef-the-kicking-cuty]

Yes, Kaiti is right. Enterolab isn't very accepted by the medical community. But from celiacs I only heard good things about them. My blood tests were only slightly elevated, but in the eyes of my doctor still in the allowed range. I didn't get the biopsy, but I received the diagnosis celiac disease from my doctor, because I reacted to the gluten challenge. He told me, that he accepted Enterolab and if I needed something written from him for this he would gladly help me. So not everybody is against Enterolab.

[SabrinaLuvsGluten]

Bless your heart..I said a little prayer for you and your son! I wanted to tell you that if you want to take him off casein and gluten, you could start him on a special formula called Neocate. He can even get it via feeding tube if it came down to that. Both my boys are on it, and I know plenty of people who have children that are even tube fed that are on it. My son has a very limited diet because of all his food allergies, and along with the foods he CAN eat, he is getting the Neocate to supplement. It is very expensive, however if you can get your doctor to write a prescription for it, you can get it paid for through the WIC program at your local health dept, or sometimes even your medical insurance will cover it..but I would try the WIC program first. You could even use it as a primary source of nutrition with nothing else if you had too..it has all the nutrition he needs. Here is a link if you would like to read more about it. Good luck and hope you get more answers soon!

Open Original Shared Link

Sabrina

[zoemom2001]

Hi - In response to your question about whether blood tests can miss celiac disease, check this out -

False Negative Serological Results Increase with Less

Severe Villous Atrophy

Dig Dis Sci. 2004 Apr;49(4):546-50

Celiac.com 08/27/2004

[burdee]

Hi Trying4Faith:

In answer to your question "Should we cut out gluten AND casein for him? What on earth will I feed him that has protein and fat?", see www.gfcfdiet.com. That website is run by parents of austic children whose symptoms can be controlled by following a gluten and casein free diet. They list foods which are safe and unsafe on their website and also nondairy foods which are high in calcium. They also publish a mainstream Gluten-free Casein-free shopping guide. I have worn out my Gluten-free Casein-free shopping guide since Enterolab diagnosed my gluten AND casein intolerance almost a year ago. I wish my mom would have had me tested for gluten/casein intolerance 50 years ago instead of asking my pediatrician for a weight loss diet to resolve my bloated celiac disease tummy and giving me enemas and milk of magnesium regularly to resolve my casein intolerance induced constipation. You can find many healthy substitutes for casein and gluten containing foods and give your son a chance to live a symptom free life.

BURDEE

[tarnalberry]

Should we cut out gluten AND casein for him?  What on earth will I feed him that has protein and fat?

Cutting out gluten and casein cuts out only two types of foods; there are a lot more than that around in your grocery store. :-) (It only seems like they're so important because that's what we get fed so often; we have other choices.)

Meats of all kinds are a good source of protein.

Eggs are a good source of protein and fat.

Nuts and seeds are a good source of protein and fat.

Avocados and oils are a good source of fat.

Soy can be a good source of both as well.

Any significantly dietary change will require you to get a bit creative, this one being no exception, but it's not that bad.