Gluten Elimination Diet As A Test?

[goldmama22]

Two weeks ago we removed gluten from my 3 year old's diet after inconclusive tests for Celiac. Her dr did not suggest it. Her dr suggested watchful waiting... oh gosh I will give background. First though let me say my questions are how long to keep her on the gluten-free diet before doing a reintroduction. I know allergies are two weeks but is it longer for celiac disease?

So the background is that at 19 months, right after we were told to see a nutritionist and run some blood tests b/c she was too skinny, she was hospitalized for a GI flu. She stayed 3 nights, went home, crashed and burned, got readmitted barely conscious the next day, and after CT and spinal tap they decided a combination of the GI flu and her low weight had shut down her digestive system. They put in an NG tube, she was discharged 4 days later, and she was on the NG tube for a total of 3 weeks. Since then we have been working with a ped GI'ist who has had her on a high calorie diet - lots of added fats and other nutrient-dense foods.

Since then she has been sick frequently, and she always loses weight really fast when sick, and a few weeks ago when my baby got Roseola (which she got as a baby already) she spiked a fever up to 104.3, and she had a fever between 100-103 for 12 days straight. Since then her temp has not gone below 99.3. She lost 2 lbs in the first week of the illness (and was at the lowest weight her dr was happy with before having lost the weight). On day 11 of the fever her dr ran blood tests for infection and for Celiac. One of the 3 celiac disease tests came back positive, but it is apparently the one that is most frequently a false positive compared to the other two - less specific but more sensitive, she said. So she said we should just see what happened with my dd's weight and if it rebounded to just assume it was a false positive and keep going forward with just a high calorie diet (and if it didn't rebound, do a biopsy).

I just wasn't comfortable doing nothing. (Watchful waiting sucks, but also, what if we're controlling her weight with fat when we could be increasing her absorption of nutrients by going gluten-free?) So we cut out gluten. But without her dr on board with us, I'm at sea. Help me out - how do we do this gluten-free test? How long for the gluten-free before reintroduction, and then how long after reintroduction would we wait to see symptoms?

Elly has gained a lot of weight back. I haven't gotten to weigh her yet but I can tell b/c her butt has a couple dimples. But I felt it was too risky to take her off the high calorie diet over the last couple weeks, so I can't rule that out as a cause - that is why reintroducing gluten is so important to us.

If you read all this, thanks, and if you didn't I totally understand but I hope you'll answer the questions about timing.

Megan

[VydorScope]

First off, skip the bisopy.

Second which test came back postive?

Third are you 100% sure she is 100% gluten-free? You can not make any mistakes or it will hinder your ablity to get results.

OKay that aside, the diet in may doctors opion is the best test for celiac disease. The Bisopy is ingrained as the "Gold Standard" here in America, but that is not true elsewhere, becuase its not a definitive test. Esply in a child so young it is almost garrenteed to be false. Also note the fact that she has been (I am assuming yes to the third question) gluten free for 2 weeks will increase the liklyhood non-postive result reguardless of wheter or not she has it. Simply put the bisopy looks for damage, and if there is not "enough" damage in the specific places the doc looks the test will be non-postive. A 19month old child has the ablity to heal that far excedes anything you could do your self, and that realy will make it hard for the bisopy. As a parent who had his son tested at 20months old, if I could go back I would skip the biospy.

I would give the diet at least a month of 100% perfect gluten free (make sure you check all soaps, skin care, hair care, personal products of all kinds, playdough, and esply cross contimation in things like butter, peanutbutter, pots, pans, etc, and dont forget all the hidden gluten soruces, lots of links on this site to help there. ) and then see if she is better.

How long it takes is an very uncertin varible. My son reacts at about 4-5 hours after getting gluten. Some take alot longer, some throw up imediatly. Esply in a child so young reactions could be subtle and it could take a while before they build up so that you notice them. Watch close for at least another month after re-introducing to see, but I would guess in a few days to a week you would get a recation.

[TCA]

My son also had inconclusive testing and we did a diet trial. It was about week 3 before we say drastic improvements. I echo what Vincent said. Make sure you're 100% gluten free. It's hard, but you'll get there! I hope she feels better soon!

[goldmama22]

Thank you for the information. We will give it a couple more weeks for sure, then.

Oh, and I weighed her and she's half a lb above her highest weight ever.

Megan

[VydorScope]

Great ont eh wight gain, please keep us udpated!

[Ursa Major]

Megan, from everything I have read, there is no such thing as a false positive on those blood tests, even though false negatives are very common.

If in two weeks gluten-free she has already surpassed her highest weight ever, I think you pretty much have your answer. The high calorie diet wouldn't do any good if her intestines wouldn't absorb any of it. Keep up the good work! And I agree with Vincent on the biopsy, don't bother with it. The diet test is the best test, especially with young children. You don't need a doctor's permission to go on a gluten-free diet, as it's a very healthy diet.