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I have FINALLY found a doctor that was willing to order this test for my 6 yr old son after the TTG-IgA and EMA were negative. I have Celiac and he has symptoms so this is a test I've been trying to get ordered for over a year....

 

Anyway, since my diagnosis in March we are a gluten free household. My 6 yr old does get a bit of gluten everyday outside of the house (daycare, school, etc) but will that be enough for an accurate DGP test? I guess my concern is that it's such a small amount each day. After the work I've put in just to get this test ordered I want an accurate result!


Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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I often see 8 weeks as the minimum and as long as 12+weeks with 1-2 slices of bread per day (I would round down for a child) as the suggested gluten challenge.  The DGP tests tend to change (ei. become negative on a gluten-free diet) faster than the tTG tests do so I would make sure gluten is eaten every day if you can - better safe than sorry.

 

Make sure the docs run both the DGP IgA and DGP IgG.  Good luck!


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Just want to clarify that he has NOT been gluten free at any point. I've seen the everyday consumption for 8 weeks recommendation but that was for someone who was completely gluten-free. Since my son has had gluten on an almost daily basis, just in small amounts, would we need to wait that long? I've been making sure he a good serving of gluten every day  this week. If I continue for 1 more week and get the lab drawn next Friday, would that be good? Ideally I would like the result by Monday, 12/29 for an appt we have. If it's negative though, I don't want to be second guessing whether the result is accurate or not...


Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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What is your definition of "small amounts, almost daily"?

When I had my kid tested I gave her noodles, bread, cakes, crackers everyday in her lunch and added a few gluten dinners outside of the house for two months to insure an accurate result. She tested negative on the complete celiac panel and a CBC was ordered since anemia was my main symptom.


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He eats breakfast at daycare and almost everyday it is something with gluten in it (pancakes, toast, cereal, etc). I also send prepackaged gluten containing items like crackers a few times a week in his lunch. On the weekends he may not have any gluten at all though if we are home all weekend.

 

I say small amounts mostly to be conservative because I don't watch him eat these things since it's away from home. I don't know how much of the pack of goldfish he eats before he throws it away. I do know he eats a ton of breakfast at daycare though. They've commented several times about how much he eats compared to the other kids.


Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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That's probably enough, but there is no way to be sure. It sounds like he is close to a slice of bread per day. Perhaps up his intake just a bit, it's not hard with Xmas baking around, and make sure it is daily (if possible).


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Thanks!

 

Follow up question: if this test is negative, along with the tTg-IgA and EMA he has already had done (IgA was sufficient) would you do the biopsy anyway? GI said that would be the next step but I just don't know if it is worth doing. I know if I just trial a gluten-free diet and he's better I'll never really have a diagnosis for him but at the same time even if we do the biopsy we could end up in the same spot if it's negative. Either way I plan on trialing a gluten-free diet unless the dr has some miracle discovery between now and his next appt to explain his symptoms.


Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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It really is up to you.  Many parents find it helpful to have a diagnosis to keep the child gluten-free.  Apparently schools often respond better to a diagnosis rather than  just a parent's word about the matter. I haven't had that experience but I am in Canada so perhaps it is different (my kids are gluten-free without a diagnosis).

 

There are some around here who had a positive biopsy with negative tests but there are not too many... It can happen.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Yeah, ideally I want a diagnosis for him, but I understand that he may have to suffer for years before a test finally comes up positive and I'm just not willing to let that happen. We'll see how the DGP tests turn out and go from there I guess!


Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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So DGP result in and negative.

 

DGP-IgA - Result 8 - Negative is <20

DGP-IgG - Result 4 - Negative is <20

 

Earlier in the year he had a negative tTg-IgA and EMA, so at this time it seems unlikely we're dealing with Celiac Disease.

 

He did have an elevated ESR and he is severely constipated.....not sure what to do next. Doctors just seem to want him on Miralax forever instead of figuring out the root cause....grrrr!

 

May try eliminating gluten anyway to see if we see improvement. That and dairy. Any other suggestions?


Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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Going gluten-free is a good idea. Non-celiac gluten sensitivity (NCGS) is much more common than celiac disease but has most of the same symptoms, and they aren't all GI related.  Give the diet at least 3-6 months before you decide on it's effectiveness; some symptoms are slower than others to improve.  A food and symptom journal is a good way to track slow changes.

 

Best wishes.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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