Celiac Child?

[katiekay]

This is going to be hard to figure out how to write...

My daughter is 18 months old.

Have to explain we have followed elimination communication from birth. Starting about 3 weeks ago I suspected she might have a wheat allergy because for several months now she has slept through the night with a dry diaper. After an increase in wheat to both of our diets (she still nurses) she stopped being dry at night. During the day she would also pee in lots of dribbles. I read in a book about how wheat (among other things) can do this and realized all the increase in wheat products we had been eating (english muffins, pbj sandwiches)... I took the wheat out of both of our diets. The very first day I started taking wheat out of her diet she stopped dribbling during the day. That night and the next night for supper we were at someone else's house so she consumed wheat (pasta etc). She was not dry at night. For a few mornings she would get a few bites of her daddy's breakfast sandwich and have an accident but once I took over her eating for the afternoon and evening she did not wet her diaper... holding it for like 3 hours between pees and able to make it to her potty often by her own volition. At night she once again became dry through the night except that Wednesday when I consumed wheat for supper. She wet the bed that night. Other nights were dry. To me this seemed to show that she had a wheat allergy. My husband did not buy this saying she just suddenly started getting the hang of it. He continued to give her wheat so she never got it completely out of her system.

OK so then this week:

From the time she was 9 months old she has not gained even 1/2 an ounce. The doctor has put her in the failure to thrive category and sent her for blood tests... one was for celiacs. I believe he did celiacs test because she started having diarrhea and throwing up on Saturday and was still having that on Wednesday when we were at the doctor's appt. We should hear back about celiacs on Monday but all other things tested for came back fine. During the appt. he checked her for dehydration and she was fine. He said she looked great and to just continue doing what we were doing but to give her wheat because we have no diagnosis of celiacs. On Wednesday night she started consuming wheat full time again. We went to my in-laws and she had pancakes... and then lots of wheat stuff on Thursday. During the day Thursday she had 8 bouts of diarrhea. I called the doctor Thursday afternoon and he went over signs of dehydration. She had none of these... in fact she peed alot and it was quite clear in color even. Today (Friday night as I type) she has not had a single episode of diarrhea despite consuming wheat including pasta. In addition during this week of being sick she was able to get almost all diarrhea (except a couple starts before getting to potty and finishing) into the potty although did pee in a few diapers and was not dry at night. This makes me wonder if I was wrong about my original thought of wheat allergy. Tonight we went back to diaper free because diarrhea is gone and she peed on floor and looked completely shocked that something was coming out of her...which was completely unlike her when she was wheat free... which makes me think I was right about the allergy.

There are other things that are happening. She is having a tough time walking... is very shaky and seems to go from furniture to furniture. BUT she is just getting over being sick with lots of diarrhea sooo maybe it's nothing. It also seems like it took her forever to start sign language / communication... I had a couple words from her... when I got her wheat free she suddenly started signing MILK and other things. Now she seems to be confused with signs. I am not sure if I am overreacting with that one also.

Also with night times... when she eats wheat she doesn't seem to sleep as well. When I took her off wheat her nap time went from waking after 30 mins to sleeping a couple hours straight with no problem. In addition I have noticed that when she eats wheat she seems to have bad dreams even though she is 18 months old and I wouldn't think she'd have anything to have a bad dream about... and sometimes when she eats lots of wheat (she loves pasta) it looks like she is in pain during the night. She will sometimes just wimper and not wake up and sometimes wake up in seeming panic and is hard to soothe. When she wakes up after a nap (on a day when she consumed wheat) she seems to wake up crying and it takes a while to soothe her.

I feel that she has celiacs but I also feel that I might be biased where I think everything lines up when it really doesn't. My husband will not believe it unless we get a positive blood test result. I have heard she could get a negative just because she is so young (and also am worried that I had taken most wheat out of her diet). and actually as I type this she just went over and sat on the potty all by herself and I just heard her pee... so maybe wheat is not a problem after all. UGH!!! The doctor wants me to keep giving her wheat until we find out she has something, my husband wants me to keep giving her wheat until we find out she has something. I think partly I think she has it because I have always wondered if I might have it due to digestive issues. And when I was researching I found my husband lined up with alot of symptoms. I think maybe all that lines up for her actually is the failure to thrive and maybe I'm just overreacting to everything else since it doesn't always happen. So confused... I also watched a video on one site where a mom discussed her daughter and how diarrhea would come and go and make it confusing so that they would think they figured out something and then be confused again. So maybe that is why all this is coming and going also. What do you guys think? I feel some pressure to take wheat out of her diet just on the off chance she might have it and it might help her gain weight. If it was up to me I would do it just in case... but it would be a CONSTANT battle with my husband and both of our families if I did this. Also if I take wheat out of her diet I would never be able to test her again (at a later age) because you need wheat in the system to get a positive test result. To me it's not that important to have a positive test result if you see improvement... but let's say she does have celiacs but we never get a positive test result. Say I take wheat out of her diet now. She gets better and starts gaining weight but my husband and the families never believe me thinking she just needed more time to gain weight (she's had 9 months at this time but his comment is still "oh she just needs more time.) and they will think I'm torturing her and starving her... I mean I would be the crazy mommy who wont allow her b-day cake because I "think" she might have celiacs. My husband has already accused me once of starving her because I wouldn't let her have some of his breakfast sandwich (this was while she was sick but before we had been to the doctor so he hadn't told me to start giving wheat back to her)

Anyway, this is a long winding email and I feel confused...

[Roda]

Make her a gluten free birthday cake and don't tell anyone. I don't think you are overreacting. Mommies just have a way of knowing when something is not right. We might not always know what it is, but we know something is wrong. If you feel you need to continue with the testing, do it while she is still consuming gluten. You may also want to get her vitamin and mineral levels checked. I know a lot of kids have negative blood work and can still be positive on biopsy. I think my oldest may be a seronegative celiac. We are going to try and see if a gi will scope him while he is still consuming gluten. I have a six year old who I put gluten free 4 1/2 month ago based on a positive ttg test only. Some days I wish I had followed it up with a consult with a GI and scope. On the other hand his ttg was barely positive, so I'm thinking that maybe he may not have had much damage (just thinking out loud). Anyway, I don't regret puting him gluten free. He is on spring break for a week and I am planning on reintroducing some gluten to see what his reaction is and I'm also going to keep a food diary. I don't expect it to last long and expect that it will reinforce my decision to put and keep him gluten free.

[katiekay]

Thank you for your response. Hopefully I'll hear something on Monday and then go from there.

[eatmeat4good]

YOu are brilliant to have figured out the connection between nightmares and wheat. It is one of the things I look back on in my son't childhood as strange because there was nothing to be upset about but night sleeplessness or terrors were common. Also the bedwetting. I did as a child until I was way too old to be doing that. My son also had this problem. It runs in families? Or it was Celiac/Gluten Intolerance.

Even if she doesn't test positive, keep these symptoms in mind for gluten intolerance.

I didn't figure it out until my son was 16 (eventually the bedwetting and night terrors went away) but then other symptoms had arrived, like muscle weakness, depression, anxiety and gluten ataxia and asthma.

My lightbulb didn't come on until I found this site 6 months ago. Whenever I look back and wonder if strange symptoms he had could have been gluten related...it ends up being so...I sort of cringe...until I read about mom's like you that are getting it earlier.

You are onto it early- good for you- You are a great mom!

[katiekay]

awwww thank you. It is a little overwhelming to sort through if I'm just paranoid / making it be wheat because I just want something to fix the problem. Due to failure to thrive I am very anxious for this to be the cure-all... Such a bummer that it's so hard to get a positive test result at this age. (My husband doesn't see the wheat problems and it would be a help if it was all documented)

[tarnalberry]

There's a lot to be said for mommy intuition. We've been EC'ing (though we didn't start that early) and signing (she's slow at it, 10.5 months and just (unclearly) signing two things), and I think that you can get a good idea of what's going on from being so observant.

You saw a correlation - ok. It may (or may not) be a causation, but you saw it repeatedly. At the same time, if your husband was still giving her wheat, it's not a good test.

You said (I think) the blood tests came back negative?

I would talk to your husband about doing a dietary challenge. Take wheat out for, say, two weeks. BE VIGILANT. Then add it back in. WRITE DOWN the changes you see and ask him to do the same. Make it clear that you're not suggesting that you guys go whole hog gluten free for the rest of her life; you're doing a test. And if he balks, ask him what the problem is with taking wheat out for two weeks? Why is eating wheat every day SOOOO important?

[katiekay]

Hi. Thanks for writing! We haven't gotten the blood test result yet. I am concerned though since she is only 18 months and I've heard it's hard to get a positive at that age. Also I had her gluten free for about 5 days before the test. The doctor said it wasn't a big deal and that she just had to have eaten wheat in the last 4 weeks. ugh... My blood test is today. If I get a positive it will help alot.