6 replies to this topic

[Cam's Mom]

Hi!
I just wanted to share this story and see if anyone has thoughts on it - since I am not quite sure what to think. Sorry, it is a bit of a long story -

My son, Stratton is 7 years old and has complained of moderate stomache pains since he was about 4. He is very, very thin (like 0 percentile on the weight charts) and of slightly less than average height for his age. He has never been a "good eater" and when he was 4 and starting complaining of pain, we were very pro-active and took him to the pediatrician who actually ordered a blood panel (which included a full celiac panel) and everything came out negative. We had never heard of celiac before and the tests were just mixed in with a bunch of other tests and so we just figured it was all neg. - so that's good.

He is also an extremely anxious/nervous kid, very high strung and fearful. He had severe sleep problems, night terrors, etc. Then as he got older his fearfulness turned more into a very volatile temper. Flash forward about 1-1/2 years and his twin sister (my daughter, obviously) is diagnosed with type 1 diabetes and as a result of routine screening of all newly diagnosed diabetics, we find out that she has celiac disease. Obviously a really stressful time in our house and we think it contributes to his anxiety. Then on recommendation of the GI we get all immediate family members tested. Son comes out neg. and he is gene tested as well and we're told he does not have the genes for celiac (unfortunately I never got to see those results, just got word from the GI). I also tested neg. but had every single symptom, so I went gluten-free with daughter and feel 150% better.

So, Stratton keeps eating his gluten, outside of the house (school lunches, snacks, friends houses, etc.) and continues to be bone thin, have stomach aches and the behavior is getting increasingly worse (2 hour fits over nothing, etc.). So one day I mentioned that if he ever wanted to try going gluten-free we'd totally support him in that. So, he decides to give it a try. We are now 2 weeks in for him and it is like having a new child in my house. He has not had a single fit, he is noticeably calmer, sleeping well. He says his stomach feels better and he is eating like crazy (normally eats very little, very picky).

So, we're asking ourselves, are we imagining this? Could it be true? Should we wait a few weeks then challenge him with gluten - or should we just accept this holiday miracle? Is it possible to see such a huge turn around in someone who has been genetically tested and said NOT to have celiac?

Any thoughts?

TIA
barb

[EBsMom]

Is it possible to see such a huge turn around in someone who has been genetically tested and said NOT to have celiac?

I think so!!! My dd (now 10) does not have either of the recognized celiac genes. We tried her on a gluten-free diet on the advice of a friend (whose dd and dw have celiac) and she started to feel better very quickly! Her symptoms were pretty severe - reflux, gas, bloating, D, pale, low energy. Within a couple of days her reflux started to subside a bit....within a week the gas was noticeably lessened....within a couple of weeks the D subsided. It's taken longer for her to regain her energy and get the color back in her cheeks, but that's to be expected. I think that kids can respond VERY QUICKLY to a gluten-free diet, if gluten is indeed their "issue." She REFUSED the idea of going back on gluten for a challenge, or to pursue a formal diagnosis (with my blessing....I didn't want to feed her gluten again.) She ended up having to give up dairy and soy....but since her diet is on track, she's only gotten healthier and more energetic. It's been nearly 7 months and I'm not sure that she's hit the "ceiling" yet.

I think that considering your ds's symptoms, if he continues to do well on the diet then you have your answer! He seems like a mature kid to decide to go gluten-free himself! Good luck to him and all of you!!!

Rhonda

[tom]

So, we're asking ourselves, are we imagining this? Could it be true? Should we wait a few weeks then challenge him with gluten - or should we just accept this holiday miracle?

Barb,
Holiday Miracle indeed!
I'd be very proud of his maturity if he were my little boy.
And I don't think I'd push for a gluten challenge, personally. The difference seems so clear-cut.

Is it possible to see such a huge turn around in someone who has been genetically tested and said NOT to have celiac?

Entirely possible. The genetic researchers themselves know it's not a 100% correlation. I don't really know the # but somehow 97% comes to mind.
I think terms like "assoc w/ celiac" are used to describe the genes they know of so far.

[Ursa Major]

That is fabulous! And no, you are definitely not imagining it. I agree, that there is no need whatsoever for a gluten challenge.

My oldest grandson (5, he also has a twin sister ) had joint and muscle pains, was very, very emotional (would cry for hours over things his siblings would just shrug off) and was so thin that he looked like he was starving (while never getting enough to eat, he'd cry when my daughter told him he couldn't have any more), you could count his ribs easily.

When my daughter made the whole family (herself and five kids, my son-in-law is on board only at home) gluten-free, Ethan improved dramatically within a week. He was much happier, will now only cry when hurt, and not prolonged, either, and he is putting on weight! He is still slim, but not frighteningly skinny.

In the spring he jumped into my arms from the stairs, and I was shocked at his feather weight. Now I lift him, and he is heavy!

With Stratton finally eating, because food doesn't make him feel bad now, he'll likely gain weight very quickly. I imagine that he likely has nutritional deficiencies, too. Make sure he takes a good (gluten-free) multivitamin. Extra vitamin D would likely be a good idea, as well as calcium and magnesium, probably iron as well (be careful with iron, testing first is a good idea).

So, keep up the good work, and you can really be proud of your little guy. If he doesn't have the 'official' celiac disease genes, he likely has gluten sensitive ones. Besides, in other countries, genes doctors in America dismiss are official celiac disease genes there.

[Cam's Mom]

Hmmm, very interesting! Thanks for the feedback. Today he said "gee, it feels so good not to be nervous all the time." Poor kid has been living with this feeling and not even having words for it for so long.

I called the pedi. gastro and asked them to mail me the medical records. It drives me crazy that they won't tell me the results of the lab work, just yes he has it or no he doesn't (and with Celiac we all know that is open to much interpretation). So hopefully I will get them shortly in the mail and will be able to post what the results of the genetic testing were for your thoughts on it.

Thanks again!

barb

[binky1246]

I wish I was as good as our kids. My 7 year old is gluten-free by choice. Once in a great while he will get upset about not eating something, but the rest of the time, he will police himself. Around Halloween, he got a cupcake at school. He wasn't sure if he should eat it so he waited until I picked him up and asked if he could have it. When I told him no, he just said oh well and threw it away. I was the one left wanting it. Anyway, I guess kids know what makes them feel better. We should all learn.