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Needing Some Clarity

ms-issippi

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ms-issippi Newbie
ms-issippi
Posted

Hello, all. I'm very new but wanted to jump in with a question that's a little time-sensitive.

 

My 6-year-old son has been officially diagnosed with "short stature" since he was three years old. Basically, he was of average height and weight until he was about 18 months old and then just stopped growing. I took him to an endocrinologist in 2011 and all of his bloodwork came back normal, including a celiac panel. He's been going back for follow-up appointments since then, and because he was hitting the minimal-required-growth rate of 2.5" a year and clinging to his spot on the percentile chart (2.5th), his doctor was content. And really, so was I, despite the fact that his father and I are of average size (5'11" and 5'5").  

 

Then last October, after more than 20 years of thinking I just had a nervous stomach, I was biopsy-diagnosed with celiac disease. With this information, I'm looking at my son's lack of growth in a new light, and at his annual endocrinologist follow-up, I mentioned this change. They ran the celiac panel and other tests, and the doctor feels everything came back normal, but I'm not as convinced. HIs vitamin was just below normal, which seems odd for a kid who drinks milk all day and has been outside all summer. He was also just below the low end of normal prealbumin. His thyroid function was iffy as well (edge of normal; she wants to retest in 4 months). 

 

So my simplest question is: now what do I do? I'm sure the most logical answer is to put him on a gluten-free diet, but there are a couple complicating factors:

1) His father and I share custody, so his dad would have to be totally on-board and able to maintain the requirements.

2) I live in a house with 8 other people (2 other adults and 5 other kids), so it would be really hard to keep him away from "bad" food.

 

In light of these, I feel like I really need to know FOR SURE if he has celiac, even though I know not everyone even gets that answer. Is there any intermediate step between here and endoscopy, other than a gluten-free diet?

 

 

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psawyer Proficient
psawyer
Posted

Hi, and welcome.

If you are planning to have the endoscopy with biopsy for diagnosis, DO NOT go on the gluten-free diet yet. You must be eating gluten on a regular basis for the test to be accurate. If you have been gluten-free for any significant time, there is a high likelihood of a false negative.

In the meantime, I don't know of any intermediate step. Others may disagree, but cutting back to "just" one slice of bread a day won't make any difference. That one slice still has massive gluten content.

ms-issippi Newbie
ms-issippi
Posted
  • Author

Thanks, Peter, I appreciate the welcome and input.

 

I forgot to mention that at this last check-up my son's weight had dropped down the charts, from about the 15th percentile to the 5th, despite no major diet or appetite changes. So that's another red flag for me. 

tommysmommy Newbie
tommysmommy
Posted

Sure sounds like you are on to your answer. I'd seek a second opinion with a pediatric gastroenterologist. Like many others, my family's experience with diagnosis was not an easy one. Once you've exhausted the medical route, you may want to try an elimination diet and see if it makes a difference...Keep in mind, even if celiac is negative, gluten-intolerance can have many of the same symptoms as celiac. It's really challenging at first, especially when coordinating households but the benefits outweigh the challenges if it makes him healthier.

frieze Community Regular
frieze
Posted

Post his lab work here...perhaps we can help.

Thanks, Peter, I appreciate the welcome and input.

 

I forgot to mention that at this last check-up my son's weight had dropped down the charts, from about the 15th percentile to the 5th, despite no major diet or appetite changes. So that's another red flag for me. 

ms-issippi Newbie
ms-issippi
Posted
  • Author

Flickr won't give me a direct .webp link, so I hope embedding the image links will work ...

 

This is his celiac panel: 

 

Open Original Shared Link
Open Original Shared Link by Open Original Shared Link, on Flickr

 

 

This is his whole workup:

 

Open Original Shared Link
Open Original Shared Link by Open Original Shared Link, on Flickr

 

Open Original Shared Link
Open Original Shared Link by Open Original Shared Link, on Flickr

 

 

Because I was biopsy-diagnosed, I'm not as familiar with the bloodwork idiosyncrasies. The only oddity that ever showed up on mine was that I was anemic. 

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