Gluten Challenge

[M0Mto3]

So, my 15 month old daughter is on a gluten challenge at the moment. Her general story is that she started out at the 50th% for weight and maintained that until her 4 month visit. By 10 months she was down to the 5th% in weight (height was 50th% is now 30th%). I got my ped to test for Celiac's at that time. She only checked ttg levels and they were fine. I had done my homework and knew that this wasn't likely to be positive in a 10 month old, so ped thought it would be good to refer to GI. At this point we started gluten-free and she was a different baby within 4 days. She no longer had 4 bms a day, she didn't have circles under her eyes anymore, her face looked fuller, and she went from barely crawling on her belly 2 feet to pulling to stand and crawling all over.

So, for 3 months (until her GI appt) she was gluten-free. The GI doc suggested we put her back on gluten and take her off dairy/soy. Basically he felt that dairy/soy was more likely the issue. She was 13 months at the time and he said he has never diagnosed Celiac's under 16 months. He didn't want to give her that lifetime of restriction without an official diagnosis. So, after a long talk with my ped (who is wonderful and was supportive either way) and thinking long and hard, we decided to go through with the gluten challenge.

She started gluten about 4 weeks ago. She had 6 bms the day after she started, then her bms were normal (1-2/day). She has been super crabby, though. Well, about 4 days ago she started having more frequent, loose, pale colored stools. She has horrible diaper rash and is waking up a lot earlier than normal for her. I think we have officially reached a point of intestinal destruction that is causing her symptoms.

I am struggling with continuing. I know at this point I want to go through with the testing. I just need some moral support from moms that put their little ones through the gluten challenge. I want to know that in the end it is worth it. Help!

[M0Mto3]

No one???

[beebs]

Hi there,

I haven't had to put my kids on a challenge yet - they are both gluten free and doing heaps better without an official diagnosis. I have thought about it...and I might do it - but I'm not sure. One of the things that makes me think about not doing it is the high false negative rates in kids even when consuming gluten! To be honest I had a nightmare time with the two before going gluten free, I am celiac as is my mother - I know its celiac for them as well. It a hard one. I'm still a bit in the do I don't I. My youngest vomitted every day of his life until he went gluten free in January - he just came off reflux meds and no vomit in sight - so I am thinking its gluten. He had a borderline biopsy and he had gastritis dundeonitis, esophageal ulcers etc just gross and he was so ill. My eldest who was 3 when he got sick became so severely anemic that he couldn't breathe properly and he developed a heart murmur from it. He couldn't stand up without falling over - just awful....I would like a diag though - people never take it seriously anyway - its even worse when they aren't diagnosed! Arrghhh

Do you think that she will physically be able to handle the challenge?

SOrry - not much help - just wanted to let you know that there are other parents out there in this difficult position!!

[M0Mto3]

Thanks for your response. Well, she goes back to GI in less than 2 weeks. He only made us do a 2 month challenge and I cheated and didn't start right away. She had a good day today, so maybe we can hang in there. She has shown symptoms her whole life, but I don't think she got as sick as most kids get prior to getting diagnosed. Her biggest symptoms were FTT and developmental delay.

There is no celiac's in the family, but my husband has type 1 diabetes. So, chances are, she carries the gene.

[Roda]

My youngest son was five when his IgA tTg came back just one number over to be positive. I put him gluten free immediatly. After about a month my husband regretted not dong the scope/biopsy. I continued him gluten free for a total of 4 1/2 months and decided to do a gluten challenge. His lasted only three days since there was obvious reactions, and by the third day his daddy said enough. He was content that the blood test and his reaction to giving him gluten was definate proof for him that he had celiac. He will be coming up on his 1 year gluten free anniversary in November. My oldest one(he is 101/2) I have toyed going gluten free with him for the past two years. Every test he has had for celiac in that time frame was negative. We finaly came to the decision to have him see a GI to have him scoped. It was negative also. He has been gluten free since about a month now and will be strictly gluten free until Christmas break. I have noticed improvements in him already. He has gained two pounds, he is more pink and is having regular BM's. I will do a gluten challenge in Dec. and see what happens. I have a suspicion that he will end up gluten free permanantly.

[salexander421]

Hopefully you will get the answers you need! We did a gluten challenge with both of our girls. I know at the time we felt we were doing the right thing but now, looking back, I regret it. I would probably feel it was worth while if we had gotten definitive answers but we didn't. There's still a big question mark in my head. I'm not trying to discourage you but do want you to know that in the end there may not be any definitive answers and at that point you just have to stick with your gut feeling. Our 3 1/2 year old tested negative after a 3 month gluten challenge but tested positive for the genetic test, she has really bad symptoms from gluten. The doctor did not want to do a scope since we don't have any "known" celiac in the family (though I do have my suspicions). Our 2 year old went through a gluten challenge at the same time (did not plan on it, it just happened that way). It was a miserable experience and she had obvious signs from the gluten. After going through all that the GI didn't feel it was necessary to test her since her sister tested negative and there was no known history in the family. At that point I was just ready for my girls to be healthy again. I immediately put them back on gluten free diet and within just a few days saw HUGE improvements. There have been a couple slip ups since then and both times our 2 year old broke out in a nasty itchy blistery rash on her bottom that looks just like dermatitis hepertiformis. It is hard sometimes not having a diagnosis but I just have to remind myself how miserable those 3 months were and that keeps me going.

Anyways, I hope you get the answers you're looking for but if you don't just trust your instincts. In the end you know what is good for your child!

[M0Mto3]

salexander...That is exactly what I was afraid of. I was just telling my mom that yesterday. It feels so awful to be putting her through this, when I know gluten is an issue for her. I know that even if she comes back with a negative blood panel I will still take her back off of gluten. I really want to keep going in the hopes of getting the positive result and eliminating any questions that I have (or that she may have over the years). She sees her ped tomorrow and I am hoping to get her opinion on this whole thing. I am also anxiously awaiting her weigh in. For anyone who has dealt with FTT in their infant that the weight issue is such a huge stressor. Now that she is back on gluten I am sure her weight gain will not be up to what it should be.

[M0Mto3]

Update after Ped appt: Weight % is now down to the 3rd%, lowest she has ever been. Ped is 100% convinced it is gluten and has already offered to refer elsewhere if we don't get the answers we need from the GI doc she is currently seeing. I told her it probably wouldn't matter because I am taking her back off gluten regardless of the test result.

Now, just 1 more week until GI appt.

[salexander421]

That's great that your ped is on board with you! Hopefully you will get the answers you need from the test, but if you don't at least you know 100%, from doing the gluten challenge, that gluten is a problem for her. Glad that you are willing to trust your own instincts and take her off gluten either way! If the test is negative I would suggest asking the GI if they can do a genetic test as well. That is what I did with our oldest. She tested negative but her genetic test was positive. I feel like I'm doing the right thing by keeping her gluten free since she obviously reacts to it and her genetic makeup says she could develop celiac at any time in her life so that's enough motivation for me to keep her 100% off of it. Look forward to hearing about your GI appt!