Not Feeling Better After Going Gluten Free...help!

[Laura--G]

My 8 year old son was diagnosed a month ago. He has been gluten free the entire time. He is still complaining of stomach aches. New things that were never going on before are going on now...he's not sleeping, he's irritable, he is anxious all the time, he worries, he says his chest hurts, he refuses to eat, he's lost weight and he even asked me to find other people who have both type 1 Diabetes and Celiac and see how long they lived. I know it has to be normal for him to feel upset over this but I am getting worried about him. Is it giong to get easier? Is this normal? He says he's scared to eat because it hurts but I tell him I won't feed him things that make him hurt. I was never told to take milk out of his diet but I see a lot of people who did that too. Should I ask about it? Please help!

[Rachel--24]

I'm sorry your son is having a hard time. It could be alot of anxiety he is experiencing since his diagnosis. If his tummy is still bothering him it wouldnt be a bad idea to remove dairy for awhile. He is probably lactose intolerant since he's newly diagnosed....once he heals the dairy can be added back in. He may be genuinely scared to eat because he's not feeling better....it could be the dairy causing him discomfort.

[shayesmom]

My 8 year old son was diagnosed a month ago. He has been gluten free the entire time. He is still complaining of stomach aches. New things that were never going on before are going on now...he's not sleeping, he's irritable, he is anxious all the time, he worries, he says his chest hurts, he refuses to eat, he's lost weight and he even asked me to find other people who have both type 1 Diabetes and Celiac and see how long they lived. I know it has to be normal for him to feel upset over this but I am getting worried about him. Is it giong to get easier? Is this normal? He says he's scared to eat because it hurts but I tell him I won't feed him things that make him hurt. I was never told to take milk out of his diet but I see a lot of people who did that too. Should I ask about it? Please help!

I would look at taking him off of dairy and soy for now (along with gluten). All three can contribute to similar problems and symptoms and so I'd try to "clear" his system, make him better and then bring the foods back in one at a time to see if there's a connection.

With the dairy though.....I know that a lot of people here say that their lactose intolerance went away, but have you considered actually testing via allergist for a possible allergy to casein or whey? From what I have read, as many as 6 out of 10 children are allergic to the proteins in milk (more in adults). I've also read studies that linked dairy to diabetes (although I cannot recall if it was type I, II or both. Will post if I find the medical study). So really, it may truly be best to avoid it.

With the current issues your son is having, I'd highly suggest finding all other food allergies, via allergist or through an elimination diet. He needs to feel well again and lose this fear of food and fear of dying. You can do an elimination diet at home. Perhaps, it would be helpful if he were to be involved...or even partly "in charge". Tell him that the two of you are going to conduct a scientific experiment where he is the one who will gauge and determine the results. You will be keeping a food journal with all foods eaten (and time) and he is to put a corrosponding smiley next to certain foods or times when he notices a reaction. That way, you can find the source of his discomfort, remove the offending item and he can feel in control of his own destiny again. I'd recommend beginning with avoidance of dairy and soy. If need be....corn, food colorings, food additives, artificial sweeteners, preservatives and if you're really ambitious....refined sugars and oranges (oranges seem to amplify other food allergies so it may help to avoid them for at least the first 4 days of the experiment). This seems a bit extreme so I wouldn't blame you if you decided to just do one food at a time. The thing is, I am looking at a faster turn around time for feeling better which may be more encouraging to your son. I wasn't aware of the Feingold diet with my dd when I did the elimination diet (one food at a time) and it took over 6 months to get it all down (and even then, I missed the artificial sweeteners). Six months is a bit long for an 8 year-old.

The ultimate point being, your son needs a way of controlling this. Living with him you have a unique perspective on who he is and how he copes. Play to his strengths and find a way to get him involved and eventually empowered.

HTH

[Guest nini]

my heart breaks for him, I remember vividly how my daughter (at three) was terrified to eat because everything she ate hurt her tummy. This was before her dx. I think one month may be a little too soon to be feeling completely better, BUT if he's actually feeling worse, I would def. look into other food intolerances as well. Dairy and Soy are big aggravators, corn is very hard to digest, and raw fruits and veggies (aside from bananas) may also be too fibrous for him just yet. I like the idea of a food elimination trial with him in charge, and keeping a journal, that way you can both keep track of any reactions or changes and you can pinpoint any patterns... Good luck with it all.

[jaten]

I don't want to automatically place my diagnosis on others, but just a thought....

gall bladder problems can cause insomnia, anxiety, chest pain, and would certainly cause the pain he's having after he eats. My GI says that Celiacs have a much higher risk of a malfunctioing (sluggish) gall bladder.

Just do a search for gall bladder and check out the symptoms. You'll know if it rings true and something you should pursue. In my case, I did not have anxiety or chest pain. But after dr. finally convinced me to have a gb emptying scan, we've learned that my gall bladder isn't functioning at all. (I really thought I was just needing to be patient for healing from severe Celiac damage)

I feel so sorry for your little one. Celiac is hard on adults, I can't imagine a child going through the sickness and pain. The children represented on this board are fortunate to have parents who care and who will dig for answers.

[TCA]

I'm so sorry he feels so bad. My heart goes out to you. My daughter will be 1 this week and she has severe reflux. This causes her a LOT of pain. She wakes up a lot with it. If he was biopsied, did they see any evidence of esophogitis or anything? She's on Prevacid and it works really well. I don't know if this could be his problem, but reflux is often present with celiac symptoms. My kids couldn't handle dairy at first either, but now can. My husband is type 1 diabetic and we suspect celiac in him. He decided to forgo the biopsy and try the diet. he's in his second month now. I understand how hard it is to find foods that work. I would try a good allergist and immunologist. A good one can help a LOT. I agree that trying dietary changes is key, but I would also consult with your doctor. I would hate for something to be missed.

Is he on the pump? Does he have good control of his diabetes? Diabetes can cause some strange symptoms when it is out of control. It's easy to suspect celiac disease, but you never know. How old is he?

Hope he feels better soon.

[Nic]

Hi, you can tell your son that my aunt, 50 + years old, is a Celiac and a diabetic. She is healthy, happy, and strong. Also, my son, now 5, was diagnosed Celiac a year ago. It took us several months gluten free to really see much improvement. But, if your son's symptoms are worsening, I agree with the others. Look into other intolerances. What does your GI say?

Nicole

[TCA]

I just happened to think, a lot of the things you mentioned can also be symptoms of anxiety and stress. I had an ulcer as a teenager because of stress, as well as insomnia. Stress can do a LOT of weird things to a body. I know how hard you're trying, but does he have a good outlet? Sports, friends...... There's nothing wrong with him having some couseling to work through these issues. I'm not saying this could be all of it, but he's dealing with a lot that he's going to have to deal with for the rest of his life. It's a lot to handle for him and having someone removed from the situation might help. Just a thought......

[Laura--G]

Thanks for all the replies.

Yes he is on the pump and he HAD really good control of his diabetes. Now that he won't eat we are a bit off, even had ketones last week because he wouldn't eat but we are working on that.

As far as the GI goes, they diagnosed him and told us to come back in 3 months. I'll call and see if we can get in faster.

Yes, he's in sports and has been since he could walk. Suddenly he's sluggish though.

We are going to his regular doctor today about it to see if we can get tested for allergies, etc. Thanks again!

I have to hand it to all of you who have Celiac or other parents who know what this is like. It's so hard when they people you love the most are hurting.

[TCA]

I just had another thought - sorry can't get it all together this morning. Have you eliminated soaps, shampoos, lotions, etc. with gluten? These were causing major problems with my daughter. I missed these for a while and she had started losing wieght. As soon as I got rid of everything in the house, she started gaining again.

[Laura--G]

No, I guess I need to look into his shampoo etc. Thanks for all the ideas.

[Guest nini]

I had another thought too about hidden glutens... When I first tried the diet before my dx, I didn't know that Taco Bell's meat mixture had gluten in it, I also didn't realize that gluten could be hidden in things like roasted nuts, ice creams, cereals and so on... All I'm trying to say is that there is a learning curve to the diet and it takes a while to figure out all the hidden glutens, besides, even if you have lists of safe products, ALWAYS read the labels, even if you've used the same product before, companies have a really bad habit of changing ingredients on us.

[gromer]

I had another thought too about hidden glutens... When I first tried the diet before my dx, I didn't know that Taco Bell's meat mixture had gluten in it, I also didn't realize that gluten could be hidden in things like roasted nuts, ice creams, cereals and so on... All I'm trying to say is that there is a learning curve to the diet and it takes a while to figure out all the hidden glutens, besides, even if you have lists of safe products, ALWAYS read the labels, even if you've used the same product before, companies have a really bad habit of changing ingredients on us.

Yeah, I read the ingredients on every product we buy, even if we have had it before. I know that this stuff changes more than computers! I am Laura's husband BTW. Thanks for the help.