What Else Could Be Going On?

[svroche]

Greetings!

My almost-5-year-old son has been undergoing testing for Failure to Thrive for about a year. In his initial bloodwork, he had a positive result for gliadin Igg (32), but everything else was negative. We were referred to a pediatric gastroenterologist who felt that, based on the GI symptoms and slow growth, he should perform an upper endoscopy. The biopsies collected in that were negative, as well as the tests for IgA deficiency and di-saccharides for lactose issues. With those results, the specialist put us on a "watch and weight" schedule, where we went for weight checks every other month. He gained a few ounces over the past year; not enough to make the doctor happy, but enough to not prompt further testing. At his last weight check, he had gained nothing, but had grown just under 1cm, which made his BMI take a dive. He will be 5 in three weeks and only weighs 30.1 lbs! That weight-check prompted new blood work and stool sample testing. All of the results came back normal, except he is Vitamin D deficient (22), so it looks like there is a malabsorption issue. The specialist has scheduled another upper endoscopy as well as a colonoscopy.

I have read that a positive gliadin IgG can be indicative of other gastrointestinal issues, but cannot find exactly what. I was wondering if anybody has had similar experience, or has any ideas of what else they should be looking for. Also, is it too soon to completely rule out Celiac?

[Teri Lou]

Greetings!

My almost-5-year-old son has been undergoing testing for Failure to Thrive for about a year. In his initial bloodwork, he had a positive result for gliadin Igg (32), but everything else was negative. We were referred to a pediatric gastroenterologist who felt that, based on the GI symptoms and slow growth, he should perform an upper endoscopy. The biopsies collected in that were negative, as well as the tests for IgA deficiency and di-saccharides for lactose issues. With those results, the specialist put us on a "watch and weight" schedule, where we went for weight checks every other month. He gained a few ounces over the past year; not enough to make the doctor happy, but enough to not prompt further testing. At his last weight check, he had gained nothing, but had grown just under 1cm, which made his BMI take a dive. He will be 5 in three weeks and only weighs 30.1 lbs! That weight-check prompted new blood work and stool sample testing. All of the results came back normal, except he is Vitamin D deficient (22), so it looks like there is a malabsorption issue. The specialist has scheduled another upper endoscopy as well as a colonoscopy.

I have read that a positive gliadin IgG can be indicative of other gastrointestinal issues, but cannot find exactly what. I was wondering if anybody has had similar experience, or has any ideas of what else they should be looking for. Also, is it too soon to completely rule out Celiac?

Honestly at this point AFTER they have retested for Celiac and completed the scopes I would do a trial gluten free even if the tests are negative. That might give you some info right there- lots of people have problems with gluten even if they have gotten negative celiac tests....in terms of what else they should look for sorry I can't help you but certainly wish you the best for your little guy. Good luck! When are his scopes?

[Takala]

Ditto to what Teri Lou said in the bottom of the quote above. After this round of tests, no matter what the results, you should trial a gluten free diet, based on his symptoms, his one positive blood test, ( a red flag,) and his lack of growth. Children grow so quickly, that within a few months it will be easy to see a difference.

This GI doc could do a yearly invasive procedure, which will then advance to suggesting your son be put on heartburn medications, stool bulking and/or softening medications, "IBS" diets, special vitamins, liquid nutritional supplements, etc, until the cows com home, but it could be years before he will be able to find a damaged spot in the duodenum to biopsy -if at all.

[svroche]

Thanks for your responses so far. Realized I left out that they have already put him on Zantac, and he is supposed to drink Carnation breakfast as a supplement at least once a day (he hates the taste of Pediasure).

After the 1st negative biopsy, I asked the specialist about a gluten free trial, and at that point he advised against it. He said we're trying to get him to gain weight and cutting out a large part of his diet based on 1 blood result would make it harder to get the high calorie foods he needs.

The scopes are scheduled for June 27th.

Right now I'm trying to get a prescription for liquid vitamin D, since the only way I can find the 5000 IUs they want him on is in adult pills!

[ravenwoodglass]

Thanks for your responses so far. Realized I left out that they have already put him on Zantac, and he is supposed to drink Carnation breakfast as a supplement at least once a day (he hates the taste of Pediasure).

After the 1st negative biopsy, I asked the specialist about a gluten free trial, and at that point he advised against it. He said we're trying to get him to gain weight and cutting out a large part of his diet based on 1 blood result would make it harder to get the high calorie foods he needs.

The scopes are scheduled for June 27th.

Right now I'm trying to get a prescription for liquid vitamin D, since the only way I can find the 5000 IUs they want him on is in adult pills!

Consider asking to be on a cancelation list for the biopsy so it can be moved up if possible and as soon as the biopsy is done do a strict trial of the diet. He can get plenty of high calorie foods on the gluten free diet. I don't know where doctors get the idea that the gluten-free diet is low calorie. It's not like all we can eat is carrots and lettuce.

[MitziG]

He is incorrect. A gluten-free diet will not make your son lose weight. Especially if you buy processed gluten-free food, like waffles, pretzels, pancake mix, etc. The vast majority are much higher in calories, fat and sugar. (It helps make up for the lack of taste!)

Seriously, having been down a similar road with my son, watched him suffer for 2 1/2 years and never grow, stuffed omeprazole down him daily, which came with its own set of new issues- only to finally get a celiac dx and see his life change....do it.

My son grew 6 " his first 8 months off gluten. He gained 11 pounds. His belly aches stopped, anxiety and depression lifted, his behavior improved, heartburn disappeared, and he started sleeping at night.

Most doctors do NOT understand the prevalence and seriousness of celiac. That ONE positive blood test was a rather specific one. Your son is making antibodies to gluten. Period.

So...my advice, since the next endoscopy is just 2 weeks away, keep him on gluten until then. But that day, go gluten-free.

Maybe the biopsy will show it this time, maybe not. But your son is most likely a celiac.

[Takala]

.... and you may want to check the current gluten free status of the Carnation Instant Breakfast, which is really just dried milk powder, sugar, and flavorings, but some flavors are gluten bearing the last time I checked.

Hmmphfff. Already on zantac.... yup, that's MedicineUSA, treat the symptoms, miss the cause....

[svroche]

So I got one more bit of news in a round-about way yesterday. My PCP finally received all the labs, and his office called to tell me that my son's platelet count is low. They said not to worry too much about it; that there are many factors to the platelet count, but it was low enough he wants to do another CBC in 4 weeks.

[Cara in Boston]

At the very least, your son is gluten intolerant (as shown by the positive blood test). The endoscopy is not 100% accurate - they may have missed the damage or perhaps there is no damage yet. Most doctors are not trained in nutrition, and your doctor is clearly wrong about the gluten-free diet. It is EASY to put on weight (gluten-free processed food) and even if you avoid those, you can still get plenty of calories from healthy, naturally gluten-free foods (meat, vegetables, fruit, lots of dairy, nuts, avocados, coconut oil) In fact, most people find they eat a healthier diet after going gluten free (lots of junk food and fast food is no longer an option.)

As soon as you have the tests done, go 100% gluten free and stick with it for 3-6 months. During that time, keep a log and document his growth, and any other interesting things - behavior, sleep, mood. You will probably notice lots of changes.

Our initial doctor visits were frustrating because my son had very few symptoms (only behavior) and he was/seemed perfectly healthy. Average size, no GI issues, etc. His blood tests were all normal (except for IgG) and he was not IgA deficient. His gene test indicated a "low probability" of celiac. The first GI said he could not possibly have celiac disease.

We took him to a specialist who did an endoscopy and found celiac damage.

When we took him off gluten he was like a different kid. He shot up 3 inches in mere weeks (he had fallen off his growth curve but we didn't notice because he was still taller than average - but not as tall as he should have been).

When we tested the family, my blood tests were highly positive (and I had plenty of symptoms) but my endoscopy was negative. I was given a diagnosis of "gluten intolerance" (which is silly, I probably have celiac) and once gluten free, I have been feeling great. If I accidently have gluten now, I get very, very ill. It is clear that the endoscopy is not the final word . . .

Trust your instincts.

Cara

[banjos]

i just want to second the idea that the endoscopy is not the final word.

i had a mildly positive blood test and a negative endoscopy yet it is CLEAR that i should not consume gluten. i am on my third month of being gluten free and have consumed gluten twice and have gotten so very ill. my dr. doesn't considered me celiac (i got the IBS diagnosis with a dairy intolerance - even though dairy does not bother me!) but i know for a fact that gluten is not my friend.

good luck!

[beachbirdie]

Thanks for your responses so far. Realized I left out that they have already put him on Zantac, and he is supposed to drink Carnation breakfast as a supplement at least once a day (he hates the taste of Pediasure).

After the 1st negative biopsy, I asked the specialist about a gluten free trial, and at that point he advised against it. He said we're trying to get him to gain weight and cutting out a large part of his diet based on 1 blood result would make it harder to get the high calorie foods he needs.

The scopes are scheduled for June 27th.

Right now I'm trying to get a prescription for liquid vitamin D, since the only way I can find the 5000 IUs they want him on is in adult pills!

The Vitamin D is another red flag for celiac. Very common for celiacs to have low D.

You do not need a prescription for liquid vitamin d. Many brands are Open Original Shared Link, and I wouldn't go with the cheapest. I would trust Pure Encapsulations (worked GREAT for me), Xymogen, Carlson, Source Naturals, Solgar. There are probably a few others I've left out but those would be at the top of my list. Most of them are very potent which would make them easy to administer...mine have 1,000 IUs per drop!

I am surprised at the recommendation that you NOT take your son off gluten. There are so many calorie-rich and nutrient dense foods you could feed him that do not have gluten. Check out the Open Original Shared Link site. While it promotes a really strict diet for kids with autism, Crohn's, and other issues, they have a LOT of good ideas for nutritious, kid-friendly foods. It is stricter than gluten-free in that is is totally grain-free, and free of most starches. It's still healthy. A lot healthier than Carnation Instant Breakfast!

[svroche]

I finally got all of his lab results. Here are the levels that were flagged:

Glucose- 117 H

Hct- 33.8 L

Platelet Morphology- Giant Platelets

Polychromasia- Increased

Schistocytes- few

AST- 55 H

Vitamin D- 25 L

Fecal Reducing Substances 1+ H

WBC Stool- Rare WBC seen

We have an appt with our specialist this Thursday, so I plan on asking what each of these means, and how they might be related.