Laboratory Results Interpretation - Question For Medical Professional

[smd818]

Hi. First post here. About 2 1/2 years ago, I requested my son be tested for Celiac. He has a history of slow growth (below 5th percentile for height/weight), digestive upset with some - but not constant- diarrhea and occasional heartburn. They did blood testing and said he came up 'negative' for celiac. We saw a gastroenterologist to check for other absorption disease. They did an endoscopy that showed markedly elevated eosinophils. They put him on Prevaicd and the next endoscopy showed improvement. Skin allergy testing showed a few mild allergies, but none to dairy or wheat. Gastro wasn't coming up with any answers, so we saw a pediatric endocrinologist. He was tried (and continues to be on) growth hormone, although after over a year has provided no growth help.

I still in my heart of hearts think hat, if there is something medically wrong, that it is gastrointestinally. I requested his medical records and have a few lab results. I'm still obtaining more, but am curious if anyone can interpret these in relation to significance celiac. The report notes IgA is tested, but then it says "See separate report" and there is no separate report. Other results:

Metabolic Panel:

SGOT: Test 1, 28 Test 2, 41 (7-35)

Alkaline phosphtase elevated: Test 1, 215 Test 2, 186 (38-128 range)

CBC:

Hemoglobin, Hematocrit, and MCH were slightly low, Platelets high/normal or high

This request for interpretation may be premature, as I haven't received the gastroenterology records yet. But still, any help appreciated.

Thanks.

[Ursa Major]

Some things are definitely off. It appears that he has slight anemia at least, as well as growth failure. If the growth hormone hasn't helped him grow then he might as well not take it!

Failure to grow and anemia are two of the most common symptoms of celiac disease in children. Plus, the celiac disease testing is extremely unreliable in young children under the age of six.

Personally I think you would do well to stop the growth hormone and put your son on a strict gluten-free/dairy free/soy free diet instead, to see if he improves on that.

How old is your son?

Skin allergy testing is useless for intolerances. If your son is intolerant to gluten and dairy, those will NOT show up on allergy testing.

It sounds like you've had the runaround, his doctors are clueless but try to sound as if they aren't. It is time to take things into your own hands to help your son. You don't need any doctor's permission to change your son's diet.

[happygirl]

If he had elevated eosinophils, did they discuss the eosinophillic disorders? (info at www.apfed.org)

[smd818]

Thanks to you both for your responses. I am frustrated by his treatment because doctors are going thruogh the time and expense to treat my son, but seem not to be analyzing the test results. At least they're not explaining their analysis. My son is 12 (almost 13), but he is about the size of a 10 year old kids. He's one of the smallest (if not the smallest) in his grade of several hundred children. He has a pale complexion, has a very light appetite, and often spends a lot of time in the bathroom. He's never liked most dairy products, doesn't tolerate chocolate, avoids most pizza. He's always had strange tastes in food (he'd rather have sushi for breakfast than pancakes).

While it seems obvious to try, I cannot simply forgoe gluten. My son's father and I are divorced, and my ex is not very cooperative when it comes to medical care or diet restrictions. I fear without a firm diagnosis from a physician based on empircal medical testing, he would not support a gluten-free diet. In fact, he might sabotage it and simply say "He's fine". If a doctor says it is celiac, he'd be more apt to support it (and failure to do so could result in loss of visitation).

As far as the elevated eosinophils, the gastroenterologist really didn't look to etiology (some potential food intolerances, but then ordered skin testing which cleared them). Rather, he prescribed Prevacid, which did help reducing the number. Still, it treated the symptom rather than the underlying cause.

Tomorrow we are going to see a doctor of naturpathic medicine. Maybe he'll have some suggestions. I am planning on insisting he be retested for celiac again and will demand to know the underlying rationale for the conclusions this time. You were right that I need to take more responsibility here. Doctors can miss things, just like anyone else.

[dadoffiveboys]

Your son sounds EXACTLY like my son. He was below the 1st percentile in weight and down to the 35th percentile in height. We saw and had him tested for celiac - was negative (although his TTG was 20 and >20 positive... I think that's pretty significant). They refused to test anything other than the TTG. He was 2 1/2 at the time he was tested.

In response, I had both my wife's and my blood tested and my wife was normal (IgA = 1, TTG = 0) but I was shown the same pattern as my son TTG 20, > 20 positiive, but my IgA anti-gliadin was equivocal at 48 (<25 normal, 25-50 equivocal, >50 positive). My tests were done by the Mayo Clinic Lab.

Myself and FOUR of my boy's are both Gluten and Casein free now and my son with the severe troubles is now in the 35th percentile on weight and the 85% in height. He grew 4 1/2 inches in 1 year on the diet - still somewhat pale complexion. His bathroom has GREATLY improved. He is now almost 4 and has been gluten-free since he was 2 3/4 now. As a caution, myself, my son and all of my other children have a problem with Gluten. Even though I am 6'4" and obviously didn't have growth stunting.. I instead gained alot of weight. It's different patterns for different people but now that I'm Gluten-free Casein-free I am losing weight and feel TERRIFIC!

If you can get him on the diet, the change in the failure to thrive pattern via the Gluten-free Casein-free diet WAS ENOUGH to get a medical diagnose. He started gaining weight and growth within 3 months and the gastroenterologist I saw said he was "non-celiac gluten allergic".

[ravenwoodglass]

  smd818 said:

Thanks to you both for your responses. I am frustrated by his treatment because doctors are going thruogh the time and expense to treat my son, but seem not to be analyzing the test results. At least they're not explaining their analysis. My son is 12 (almost 13), but he is about the size of a 10 year old kids. He's one of the smallest (if not the smallest) in his grade of several hundred children. He has a pale complexion, has a very light appetite, and often spends a lot of time in the bathroom. He's never liked most dairy products, doesn't tolerate chocolate, avoids most pizza. He's always had strange tastes in food (he'd rather have sushi for breakfast than pancakes).

While it seems obvious to try, I cannot simply forgoe gluten. My son's father and I are divorced, and my ex is not very cooperative when it comes to medical care or diet restrictions. I fear without a firm diagnosis from a physician based on empircal medical testing, he would not support a gluten-free diet. In fact, he might sabotage it and simply say "He's fine". If a doctor says it is celiac, he'd be more apt to support it (and failure to do so could result in loss of visitation).

As far as the elevated eosinophils, the gastroenterologist really didn't look to etiology (some potential food intolerances, but then ordered skin testing which cleared them). Rather, he prescribed Prevacid, which did help reducing the number. Still, it treated the symptom rather than the underlying cause.

Tomorrow we are going to see a doctor of naturpathic medicine. Maybe he'll have some suggestions. I am planning on insisting he be retested for celiac again and will demand to know the underlying rationale for the conclusions this time. You were right that I need to take more responsibility here. Doctors can miss things, just like anyone else.

I do hope you get a positive diagnosis for this young mans sake if that is the only way to get his father to comply. He reads just like my son and I would give anything to have had the knowledge to try the diet when he was 12. Even just one more inch of height would make a difference for him. I have a wonderful, sensitive, intelligent and handsome young man who had his height severely impact his teen years. He is now 25 and wasn't diagnosed until after his growth plates has fused. He topped out a 5 feet and 110 lbs, never even had close to a growth spurt. Not only is it very tough for him to find clothes it is very hard for him to even work up the nerve to ask a girl out. Most won't even consider dating a guy his size, they don't at that age look past appearance to see the worthwile person inside.

Although my son could have been a poster child for celiac it was not even looked for until after my long blood test negative fight to get diagnosed. Although he and his sister were only ONE point into the positive levels on blood testing the diet made an incredible difference for him, too bad we, unlike your family, didn't have a clue what was going on until it was too late. I do pray that his father will let you give the diet a good try. If you can get him to visit here, maybe we can educate him on this issue.

[AliB]

  smd818 said:

Tomorrow we are going to see a doctor of naturpathic medicine. Maybe he'll have some suggestions. I am planning on insisting he be retested for celiac again and will demand to know the underlying rationale for the conclusions this time. You were right that I need to take more responsibility here. Doctors can miss things, just like anyone else.

What I am telling my daughter who is going through a similar situation with her eldest son is that the key is knowledge. I went in to my GP today to request a retest. After a short conversation she openly acknowledged that I know more about this than she does! How refreshing is that?!

As a result she applied for several tests for me although she hadn't heard of some - a repeat of the tTg, an EMA, an IGg and a RAST test for wheat. I doubt the RAST will show anything as this is a gluten intolerance not a wheat allergy but you never know.

My daughter took our grandson to the doctor today to discuss his results. The doctor seems to think that it is negative but he did say that is common in children and is not indicative that they don't have it. He did say that his reaction to gluten and the fact that he is better off it does suggest that it is Celiac, which was also refreshing. I just hope the Ped is as enlightened next month!

I know what you mean about the ex too. Our ex SIL thinks it is a load of rubbish and insisted on giving him pizza on Sunday. He wasn't there for the 2 days of 'fall-out' afterwards! The sad thing is that all those people out there who quite happily ridicule us are the very ones who are oblivious to the fact that their own health problems are down to the same source!