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How Soon To Test

jadesmum

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jadesmum Rookie
jadesmum
Posted

Hi

My daughter has celiac disease she was diagnosed one year ago (when she was 18 months) she was very ill and wasted away. Anyway her specialist told me not to feed my son gluten until he was 12 months old. So he turned one in November and has been on Gluten for 2.5 weeks. He hasn't had a solid poo since! All very runny and it is giving him nappy rash badly. His mood has changed too he is more clingy and grumpy.

I have called the specialist today and am waiting for him to get b ack to me (which may be sometime this week). But I just don't know what to do, he is so miserable (he is usually the most happy baby around), I don't know if its a coincidence and maybe its some other gastro thing I am not sure. He is also getting teeth which doesn't help either.

Anyway my question is how soon is too soon to test, I was thinking they had to be on gluten for about 3 months, but I seriously don't think I can wait that long. Should I just do gluten-free again, hmm I don't know, I hate seeing him so sad, it brings me back to those awful days with my daughter. My daughter had Gluten for one year before she was tested (it isn't in our family so we didn't have a clue) and she looked like a starved child with her belly sticking out, she was miserable all the time and clung onto my husband like there was no tomorrow. She pooed all day and vomited (which my son hasn't done yet) and by the time they did the biopsy at 18 months her villi was completely flat. She is fine now, but has accidentally had gluten once and her mood was terrible.

Anyway sorry for the rant, but I just don't know if I can go through all that again, I want a diagnosis now I will have to go gluten-free again, what do you think my chances are?

Belinda

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CarlaB Enthusiast
CarlaB
Posted

You could get a genetic test to see if he carries the gene. Just because he carries the gene does not mean he has celiac disease, but with the gene test and the dietary response you could justify keeping him gluten free with no more testing ... if you really want to know for sure, he needs to eat lots of it for three or four months.

FeedIndy Contributor
FeedIndy
Posted

My doctor said 6-8 weeks. DD doesn't have an "official" diagnosis because her blood test was negative and we opted to do a gluten free trial instead of the biopsy. Her doc wants us to do a gluten challenge when she is 4 so she doesn't have to stay gluten free at school if it turns out to be unnecessary. I was told she would have to eat gluten regularly for 6-8 weeks, though she gets sick for 2 days if she finds a crumb on the floor so I don't see her lasting a week.

Ursa Major Collaborator
Ursa Major
Posted

FeedIndy, your doctor is sadly misinformed. Six to eight weeks is not enough for valid testing and would likely result in a false negative. Six months to a year on gluten is usually required. I see absolutely no need for your daughter to go through having her villi destroyed and getting awfully ill (with possible permanent damage) just for an 'official' diagnosis. You know that gluten makes her sick, shouldn't that be enough evidence?

Belinda, I agree with Carla. Why not get the genetic test done? You really don't want your son to have his villi destroyed and be as sick as your daughter was. If he was my child, I'd put him right back on the gluten-free diet, and if his diarrhea, rash and crankiness go away, you really would have your answer.

FeedIndy Contributor
FeedIndy
Posted
FeedIndy, your doctor is sadly misinformed.

He is learning right along with us. I'm just glad he was informed enough to make the celiac connection. She didn't have many symptoms at first, but he was right on top of her growth downturn. It's probably a moot point in our case anyway as I know she'll be violently ill by the end of the first week.

Ursa Major Collaborator
Ursa Major
Posted

I am glad you're aren't seriously considering putting your daughter through torture like that. And I guess your doctor and my doctor are both learning. Which is good, at least they aren't arrogant on top of their ignorance, like some doctors.

And yes, he is ahead of a lot of doctors, by having considered celiac disease at all.

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