New To Celiac, Scared About Son's Health

[Blake's Mom]

Hi,

I am new to this sight. I am worried sick about my 4-year-old. He started having soft stools over summer and had diarrhea for all of October and November (6-8 times a day). He has been on a gluten free diet since December 10th and is now having just one or 2 bowel movements a day, but they still do not look normal (light tan, soft, sometime floating).

All his blood tests have come out negative, but my pediatrician has not given us the ok to see a specialist yet since he is now only going once a day. She wants to wait a few months and see how he progresses on this diet and then put him back on wheat. I'm so frustrated.

He has not lost weight. He was 38 pounds in the summer and is now 43 pounds. He was 42 inches in Sept and is now 43 inches, so he's still growing. But I can't help worrying that he may still be vitamin deficient, and that we should be seeing a celiac specialist despite the negative results.

When we did the blood tests he had only been back on wheat for 3 days, after being off of it for a week. Any suggestions?

I have also noticed some extra bruising on his legs and bloodshot eyes, don't know if that is related.

I am also always scared that there is hidden gluten in foods I am giving him. Are potato chips and disney gummy vitamins gluten free? I'm a wreck

[Kibbie]

Hi,

I am new to this sight. I am worried sick about my 4-year-old. He started having soft stools over summer and had diarrhea for all of October and November (6-8 times a day). He has been on a gluten free diet since December 10th and is now having just one or 2 bowel movements a day, but they still do not look normal (light tan, soft, sometime floating).

All his blood tests have come out negative, but my pediatrician has not given us the ok to see a specialist yet since he is now only going once a day. She wants to wait a few months and see how he progresses on this diet and then put him back on wheat. I'm so frustrated.

He has not lost weight. He was 38 pounds in the summer and is now 43 pounds. He was 42 inches in Sept and is now 43 inches, so he's still growing. But I can't help worrying that he may still be vitamin deficient, and that we should be seeing a celiac specialist despite the negative results.

When we did the blood tests he had only been back on wheat for 3 days, after being off of it for a week. Any suggestions?

I have also noticed some extra bruising on his legs and bloodshot eyes, don't know if that is related.

I am also always scared that there is hidden gluten in foods I am giving him. Are potato chips and disney gummy vitamins gluten free? I'm a wreck

My daughter has been gluten free for nearly 4 months now and there are days where her bm's are lighter in color and much softer. I used to think its because she was 'glutened" but this happens at least 2-3 times a month. I have watched for a pattern and can tall you that when it happens there have been 0 chances of her being glutened. Her GI told me that bm's can be crazy things with kids and that I shouldn't worry about it too much.

As far as seeing a specialist goes that is up to you. My daughter had a positive diagnosis at 18 months with blood work and a biopsy to confirm diagnosis because my husband needed that information. I on the other hand was willing to try the diet and if it worked and stay gluten free if it did! It is a very personal decision and not an easy one!

As far as hidden gluten I can tell you that I shop with cell phone in hand and call the companies when I see terms like spices, natural flavors, artificial flavors, or any word that I don't know what it is. Shopping takes longer but I know that what I have is gluten free. Though it takes time while I'm shopping it saves me a ton of time at home when I am fixing meals and snacks because I don't have to read lables at home (our entire house is gluten free). When I was at my parents house (not a gluten free house) I took a sharpie marker and labeled everything that was gluten free with a huge bright gluten-free on it. That way I didn't have to worry about it there either!

Hope this helps!

[Blake's Mom]

Thanks so much for your reply. Everytime my son has a soft bowel movement I am going crazy trying to think what food may have caused it, but knowing that it happens to others without being glutened is helpful.

[taweavmo3]

As far as hidden gluten.....some potato chips do have gluten in them. We eat Lays Stax, they say gluten free right on the container. As far as anything else questionable, you really just have to call each and every company to get a confirmation. I was on the phone ALOT at first until I learned what was safe. Kraft is a company that will list any hidden gluten, so if you don't see wheat, rye, barley or oats listed, it is safe to eat. Love Kraft! And Walmart's Great Value brand will list safe foods as gluten free.

Regarding Bm's....it can take a while for them to return to normal. Since it's only been a few weeks since your child has been on the diet, I wouldn't expect bm's to be normal quite yet. I don't really understand your pedi's plan to see how your child does on the diet, THEN put him back on wheat. If you want to pursue an actual diagnosis, I would insist on being referred to a pediatric GI for an evaluation. If all the tests come back negative, or you hit another brick wall with the pedi GI.....stick with the diet if you see improvement. Alot of doctors still think kids have to be failure to thrive before they can be positive for Celiac, but that's simply not true. Good luck!