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Already Seeing Improvements
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My oldest son who is 10.5 years old has had repeated blood work for celiac that is negative. He had a scope/biopsy last month that was negative also. Based on his past history and current issues of reccurent gas/bloating, abdominal pain, slow/stalled growth, and irregularity/constipation, we have decided to give gluten free a try for a good three months.

First week I noticed him becoming more moody. However he has IgE allergies and does allergy shots for these. When his allergy load is high he is moody as well. So it's hard to tell if that is related or not. He also had some issues with insomnia. Insomnia has resolved and the moodiness is better but still there some due to allergies. The biggest thing I have noticed is that he is having more regular bowel movements as he has stated that he is going a lot more. He also hasn't complained of any gas/bloating recently either. It wasn't abnormal for him to go up to four days before going to the bathroom. I haven't changed anything except removing gluten. He has a follow up appointment with the GI on Sept. 15th. I know he won't get a diagnosis of celiac but I'm leaning on the possibility that he is non celiac gluten intolerent. Now lets hope he takes off growing like my 6 year old has.

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Best of luck! Yes, I hope he takes off growing too. My 11 yr old almost 12 :) had a "weak" positive as the pediatrician put it...and wants us to see the ped. gastro. Anyway, I decided to remove gluten immediately and he too has seen improvement...3 wks into it and he's muscle pain free. I did notice changes in his bowels too...as I think he was going more. He told me at first he was "having issues" in the bathroom. I am thinking that his body is trying to regulate and figure out these changes placed upon it. I think he's doing great though...I even notice his face looks so much healthier. No more dark circles under the eyes!!

I know everyone worries about that "diagnosis" for school. That if you don't get the diagnosis then there could be issues with school. I wonder though ...why wouldn't a dr label a child as gluten intolerant if celiac isn't 100% confirmed. If the family knows gluten was an issue....I'm thinking then I would hope a doctor would send a note to the school saying said child needs to remain on a gluten free diet and accomidations must be taken for him. Why is it that it's always just "we need that diagnosis of celiac."...when why couldn't it also just be "gluten intolerant" in cases that the child hasn't been officially diagnosed with celiac. Hmmm....

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I don't know either. Technically speaking my youngest son doesn't have a diagnosis as of yet, going to get though(he had a positive tTg and resounding response to the diet and horrible 3 day gluten challenge), and his allergist wrote a note to the school of the need to be on the diet. The school took it very seriouslly and I have not had any issues. As for my oldest I have nothing and didn't say anything to the school as of yet. He is in 5th grade so I think for now he can manage alright. I'll be discussing things when he goes back to the GI. He and I talked about it yesterday. He is already looking forward to Dec. so he can eat pizza. I asked him what he would do if he had negative effects when he went back to eating gluten even with all his testing negative. He did ponder awhile and said it would be hard but could commit even without a diagnosis. I told him that it might suck now to give up things he enjoys, but worth it in the end to not have belly aches, to maybe grow some and lower the risk of further issues down the road. Knowledge is power. I'm hoping I see some improvement in his allergies, but not too hopeful on that front.

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Well, we went to our follow up appointment. He has had a 2lb weight gain since around the end of July when we seen her last! I find that utterly amazing since he barely gains maybe 2-4lbs in a whole year. Actually he hasen't gained any at all this year till this. Usually for him when he does gain weight he also grows taller. I'm so hopeful! Is it possible to see improvements just after three weeks? The doc also thought his color looked better, more pink. We will be following up in Jan. after his gluten challenge to review how things go. She leaning on that he is gluten intolerent. There was one thing I disagreed with her is that she wanted to find out his "tolerence" to see if he was able to have a cheat once and a while.(She didn't advocate this for the diagnosed celiac) I told her that it was all or nothing!! I mentioned this to my husband and he even agreed with me. This is so helping me realize that I made the right decision.

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Well, it had been 3.5 months, almost 4, since my oldest son went gluten free. Here are some of the improvements we have seen: weight gain of around 6 lbs., slowly starting to grow in height, increase in shoe size, bowel movements regular going at least every day to every other day and no more stomach aches/bloating/constipation.

So at the beginning of this I told him that we would reintroduce gluten after Christmas. Well, we did, and suprisingly he didn't get a horrible reaction. I do believe he had some symptoms, but were mild. Things he did experience were stomach ache, headache and some moodiness(not sure if gluten or just lack of sleep). He ate a total of 6 doughnut holes, three doughnuts, some bread sticks, 1/2 pizza, and some granola bars. This was over the course of several days.

I asked him what he would like to do today because school is starting back tomorrow. He told me he is probably going to stay gluten free.

I don't believe the 6+ lb weight gain is a coincidence at all. Some could argue that it was just his time to take off, but I don't think so. I just thought I would share an update...

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So glad to hear everything is going well with your son!

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    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
    • I think that we have to remember that celiacs often develop intolerances due to our  damaged guts.  Our guts do not ncessarily heal either (usually adults) for  a variety of reasons even if their symptoms improve (see links below).   Nuts are just plain hard to digest.   I can not tolerate almonds, but can handle walnuts and cashews in small amounts.  I can eat peanuts too, but resort to Peanutbutter after a Glutening as it is easier to digest (maybe I have to learn to chew better!  😀)  My nut symptoms have  nothing to do with gluten as I have purchased certified gluten-free nuts and suffered with the same symptoms.  .   https://www.verywell.com/celiac-disease-when-will-your-small-intestine-recover-562341 http://www.cureceliacdisease.org/treatment/ http://www.ncbi.nlm.nih.gov/pubmed/23936873 i call the manufacturer when I suspect the manufacturer is sharing the line or if I just want to know.  I bought some Black English walnuts and called the company.  Those are the only nuts they process and they do not have any flavored nuts.   if you really want to test your theory out, buy some nuts from Nuts.com (certified gluten-free).   See if you get a reaction or ask your GI to retest your antibodies (which should be done annually anyway).   I just hate to have Planters get a bum rap when you do not really know for sure.......😥    
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