Celiac.com Sponsor (A1):

Join eNewsletter

Celiac.com Sponsor (A1-m):

Join eNewsletter

Nathan's mom

Advanced Members
  • Content Count

  • Joined

  • Last visited

About Nathan's mom

  • Rank
    Star Contributor

  1. We finally landed at a GI's office 2 months after my son was gluten-free - after his bloodwork and advice from a doctor to take him off gluten and "see if it makes a difference". He explained that the Ttg was very specific for Celiac disease and advised to have the scope done. Up until then I just thought my son had a gluten intolerance. I decided against the procedure because we just started to see our son begin to get better at that point. I was afraid to put him back on gluten - afraid of what it would do to his immune system.

    However, if he turns, let's say 11 and decides he wants "proof" then I will back him up and let him go for it. Honestly though, I don't think he could tolerate eating gluten again. I think he would be so sick after the first day he wouldn't be able to go through with it.

    I think I would just like to know and wish we could have had it done. And yet, he's had gluten a couple of times and we've seen him react to it and know he can't have it. I know that doesn't make any sense. I guess I still hold out hope he isn't really celiac.


  2. Thanks for all the replies. I guess I could start this as a new topic but it does tie in to this whole subject of "what do you do to insure your child does not get glutened". I've had my son attend a daycare about three days a week for a few hours a day before K to give him some more playtime experience. In two months he has been glutened 3 times. Two times I know about and the third were just symptoms but it had to be something from there. Yesterday was his last scheduled day and even if it was not it would have been his last day. The place is caring, wonderful, etc. etc., but they are SORELY lacking when it comes to understanding food issues.

    I feel like because I didn't tell them he would have anaphylactic shock that the whole gluten thing was not taken seriously. When I picked him up yesterday they were having afternoon snack. I had a snack labeled for him in his bag but he had a cracker in his hand, and said, "Mommy, they gave me an animal cracker". It had a bite taken out of it. Thank God he didn't eat the whole tray set out before him. His teacher came up behind me and said, "I'm sorry, I forgot he couldn't have that". What???? I was just speechless. I was so frustrated and will make a point to have a meeting with the director. I just don't know why they can't remember!

    Well, anyway my son is going into K this coming Fall. I am now asking that gluten-free supplies be furnished in the classroom. If they won't provide gluten-free dough, then I will purchase it (although I'm not telling then that until I find out if they will get it for the class). My son can't have a successful year in K if he gets glutened. For the next two days I can't take him anywhere because I never know when he will have a sploogie in his underwear because of the animal cracker. I don't want that to happen to him in K. My husband is on the same page as me also with this now.

    You know, all things happen for a reason. The daycare experience taught me what I should have done and will do before he goes to K:

    - I need to have a meeting with his teacher (not just hand a piece of paper and say a few words). Quality time in the beginning makes for clearer understanding. I have requested a meeting before the start of the year. I was teaching before he was born and know how busy this time is, but it doesn't get any less busy once class is in session.

    - I need to stress that his whole body is affected when he is glutened and that he will be missing days from school (which means $$$ to any administrator) everytime he is glutened.

    - I need to stress repeatedly that he is not to be given anything that I haven't approved of or provided.

    In short, I feel like I am a better advocate for my son now. I hope the experience and response from the school is better. Believe it or not, the little country school he will be attending has only 90 students and supposedly there are two celiacs there already!!


  3. Hi,

    My son was a picky eater also and now is not. We used to call him a Carbivore because he only focused on snack type food, or bread. About 3-4 months after being gluten-free (he was 3 1/2 at that time) he began trying a lot of different food. I don't think he just developmentally changed, but rather was feeling better and/or his brain was processing things differently.

    One night I got the urge to ask, "How about a taco salad tonight?" He said "Sure!" Well, that response surprised me, but I was really surprised when he began eating this huge plate of salad with all the fixings on it. And the salad wasn't just iceburg lettuce, either! My regret is that I didn't take a picture. I literally stood there with my mouth open watching him. :o I was shocked. He was on a roll then (no pun intended) and began trying other "green" things like guacamole and broccoli. Good heavens!!

    Well, I don't know if your child will follow in this vein, but I had to share because it certainly is true that gluten affects a lot more than just the stomach.


  4. Okay, I got up the nerve to ask it! I know the dangers of playdo under the fingernails, etc. I'm just wondering if anyone lets their older child play with playdo? I'm trying to teach my son to remember it has gluten, to not put it in his mouth, and to wash his hands well. I want him to learn to navigate in a gluten-filled world!

    Does anyone out there do this?

    What do you do with your child's classroom? I know Model Magic is gluten free. How did the school respond to your request?

    Just wondering and wanting feedback.

    Please don't slam me for asking the question or for not insisting the school accomodate him in a special way. I don't want anyone giving him food I haven't approved of or provided for him, but I do have a bit of a problem with the insistence that special things be purchased for him if I feel like he will be okay using these products. He does not have DH obviously. Okay, I've said it. Fire away:)


  5. My son has been gluten-free for almost 18 months. I did try enzymes with him (mainly to see if they would help with other intolerances that I felt were affecting behavior). I think the enzymes were too harsh on his intestines. I did read in an Enzyme book that some can clean the intestines (along with helping to break down foods) which is likened to cleaning a scrapped knee (some irritation before feeling better). Anyway, we made a decision to scrap the enzymes. Who knows? They may work for her - we used Enzymedica brand. I would just caution in using a small amount to begin with. I don't know how old your daughter is but if she is old enough she can give you information on how they are making her feel.

    My son has just in the last month had poop that looks normal. It is no longer huge and yellow colored. It is well...more normal - brownish and regular size. BTW he is still 4 so I can check out his poop still :P

    I read a study (sorry I can't post a link to it) that stated how long it takes for the intestines to heal. I do remember it said that for kids 6 and under it can take up to 2 years for the intestines to heal 95%. Wow!! I just thought my son was a slow healer. He is now able to tolerate just about any food and his behavior just keeps improving. We have been 100% gluten-free since his diagnoses so it was just a case of needing more time.

    Hope that helps!


  6. My son is 4 1/2 and will be starting K soon. I wish his behavior was more predictable and less hyper. It's not that he is extreme at all and does pretty well obeying the rules of the house, but it is clear that he reacts to more than one thing. The problem is that it isn't always clear what that would be. He has been gluten-free for over a year now. I've gone over and over any cc issues and I don't see any. We are a gluten-free house and I've looked at soaps, etc. We've seen sleep issues improve and bowel movement ones improve. However, he is still not as calm as I would like. I'm not talking about regular busy boy behavior but more like mood swings, and ebbs and flows of hyperness.

    It is really hard to isolate just what makes him react. I know that sugar load is one thing, we avoid soy also, and anything that is packaged with a lot of ingredients. I'm thinking of cutting down on glutamates (tasty food) and possibly doing an elimination diet cutting out rice just to see if THAT might be the problem.

    Just need some encouragement to keep plodding along. I know how wonderful, bright, and tender hearted he is. Some people don't see that side of him just a boy who is "a handful". Any advice/encouragement is appreciated. When people suggest the word "hyper" to describe him makes me ready for the school to label him as ADHD which really doesn't help because that doesn't change him and I know he is reacting to something.



  7. My son is 4 1/2 and he has been gluten-free for almost a year now. We know that 8 days ago he was gluttoned while in a church class. I think it was only about 1/2 a graham cracker. That afternoon he commented that his stomach hurt. Two days later he had some huge poop for two days in a row (like a foot and a half long and 2 inches wide - don't mean to be gross but you all know how poop matters!). On day 4, 5, and 6 he was "off" - hyper, onry, etc. Then he cried out in his sleep on day 6 and 7 and then last night he was awake 2+hours. I do know that one of the signs of him detoxing from something is being wide-awake in the middle of the night. When I first eliminated gluten 100% a year ago, he was wide awake in the middle of the night for 6 nights in a row - about 2-3 hours each night. This is a symptom that has disappeared after eliminating gluten but it was also present when detoxing from it.

    Could this 8 day cycle of events be from the gluten the previous Sunday? Anyone else experience this?



  8. Make her an appointment and have her vitamin levels, thyroid, and iron storage levels checked. For my friends daughter, 10 was when she started having mood swings, being tired all the time, etc. She has hypothyroidism. They think the prepuberty hormones kicking in triggered it.

    And of course, with Celiac, there is a higher chance of other autoimmune things coming into play.

    Take care,


  9. Julie,

    I'm just curious. Do you mean your daughter is intolerant of those things or allergic? Did you figure out all those foods yourself or did you have any kind of testing done?

    I'm so glad she is doing well. It seems like when things mess with the body, for some it affects their nervous system/brain and it takes a long time to improve. I was hoping my son's mood swings/behavior would improve after he was off gluten but that piece of the puzzle is not solved yet.



  10. Hi Hiveman,

    I've read all of your post including the fact your blood levels have gone down and that you don't really want ideas - but I can't resist!! It is so much easier to "figure out" what is going on with someone else than be baffled by why my son isn't getting better behaviorally. :P

    When you mentioned a problem with aspirin it did make me think of salicylates. They can be responsible for a multitude of symptoms. There are many sites for salicylate intolerance on the web. Some just suggest reducing those with high levels, but I do think if you try an elimination test on this one you need to keep the levels low.

    It must STINK to have to give up gluten and not feel any different! I admire you for sticking to it.


  11. Thyroid and low iron stores can do this also. I have had the same frustration with my son (4) not getting better sooner as I would like. He eats constantly at times, is still hyper/strange behavior, etc. and tired. He was low on certain vitamins showing some malabsorption continuing. His tTG was in a good range though. Why it is taking him longer to heal I don't know.

    It is hard when they are young to have them get bloodwork. Ask and get all you can!!!! Tell them what you want don't ask.

    Good luck!!

  12. My son had bloodwork done 3 times in the last several months. I thought the first time would be awful, but then realized it wasn't so bad because he didn't really know what was happening until the needle went in. Two out of the three times the technician got it on the first try very quickly. Only once did they have to "dig". I was praying very hard at that point!

    It was certainly MUCH harder on me than my son. He would comment later that it was scary, but he is fine now. I think it was easiest when he was sitting on Daddy's lap with me at the side, rather than laying down with 4 adults pinning down limbs like the first time.

    The bloodwork is so important but it is awful to go through. Just give lots of treats and TLC after.

    Take care!!

  13. Hi,

    I may be way off in my explanation of this, but I seem to recall reading something that supports this. When my son was very symptomatic (he only had C and sleep issues before), his eyes itched, skin itched, and he was clearing his throat 24-7. I think his immune system was on the alert and as a consequence he was super "healthy" over the winter- no colds, etc (he is 4). However, at the same time he was very symptomatic for Celiac with diarrhea and irritability. Now that he is 6 months gluten-free he seems to get a cold every 4-6 weeks. Not entirely uncommon for a little one who associates with other little ones. They catch things. It made sense to me that this was a good sign. It seems like his immune system is reacting properly now. When your immune system is on high all the time it is a drain on your body and it is not always necessarily a good sign when you don't "catch" anything.

    Anyone else with a better explanation?

  14. Yes, thanks for your post, Burdee. I want to take my son to a ND before too long. We have been going through the MD route. I have had great doctors for him, but everytime I mention the bacteria/yeast thing, the subject gets changed or they flat tell me not enough is known about it to test. Their protocol doesn't allow them to venture there - even though I have read medical reports online about tests showing a link between bacteria and malabsorption.

    What would you recommend in selecting a Naturopath?



  15. Thanks Adelle. I found the ROCK coordinator listed for Salem and emailed her. It's a bit of a drive for me, but it would be worth it. I thought I would see what it is like and perhaps try to form a chapter closer to me. I KNOW there has to be other Celiac kids nearby.

    Yes, we went to the Living Earth Bakery in Corvallis. It was SO FUN to take my son in there and let him pick out whatever he wanted.


  16. Hi,

    Just wondering if anyone lives near me with young kids that just happen to eat things made with xanthum gum and lots of egg whites? :lol:

    I live about 30 minutes north of Eugene and 90 minutes south of Portland. Anyone feel the need from time to time to introduce or set up playdates with other celiac kids? I want my son to learn to live in the real world, but that also includes letting him meet other celiacs like him!

    Has anyone ever organized such playdates? What do you do, take an ad out in the newspaper to find out whose out there?


  17. We're getting his bloodwork done again. It's been a month since the last and I really wish we had the nutritional panel done in the beginning so we could compare from then. I did ask the doctor to add on another Ttg so we can just see if it is still elevated. I don't know where I'll begin if it is still high because I have wracked my brain with any possible cc issues and rechecked routine foods he eats for gluten. Like I said, we don't eat out and I make all the baked goods.

    The doctor did say that albumin does take awhile to recover (he said 90 days, though) and albumin transports protein as well as calcium. I would just think that with kids they would heal sooner.

  18. My son's recent blood test checking for vitamin/mineral levels as well as liver function had a lot of highs and lows. Some are just outside the mark, but albumin and calcium are definitely low.

    He has been gluten-free for 6 months. He is not getting gluten from anywhere else. He is only 4 and I am a stay-at-home mom. I make all our bread, etc.

    Anyone else's kids still not really well at 6 months gluten-free?

    His stools are still big and floaty. He still only goes every other day. Most days he wakes up and tells me he is tired (his iron is fine, too).

    Any feedback is appreciated - but no, he is not getting gluttened. We haven't gone out to eat either (I am definitely missing that!!!)



  19. I'm confused about corn. I've read the post about Bob's Red Mill not labeling their corn products as gluten-free because it is produced in the regular mill. They wrote that as soon as they get gluten free corn to mill they will label it as such. Is all corn purchased in the U.S. somehow contaminated with wheat because of the initial grain storage or something else?

    I was ready to make a pie crust with some Rapunzel organic corn starch (paid a whopper for that) and read, "May contain traces of wheat". Ugh. Does anyone know of corn products (chips, starch, anything) that is actually labeled gluten-free?


    Still muddying my way through here :unsure:

  20. I'm sorry I don't have time to read all the replies, but get rid of the dairy 100% in her diet and yours (I think I read you are breastfeeding). See if that helps. If not, take her back to the doctor! I used the FAILSAFE diet for my son for awhile. It worked for a friend of mine, but not for me. It only made matters worse because I fed my son lots of whole wheat stuff since his diet was so narrow. Now, he is Celiac :(

    My advice is the dairy exclusion and keep taking your baby back to the doctor until they test some more or do something. Be careful with excluding so many foods from the diet when you don't know yet what is going on. I know you're anxious to fix things as I was, but do try to work with a doctor first. If he or she is putting you off, go to another.

    Take care,


  21. Thanks so much. I'm always on the look out for good "goody" recipes. I take a cooler when we go places for my son. I have an array of substitutes. One Sunday morning his class at church had animal cookies. He had to eat his corn chips. I felt so bad for him :( I won't let that happen again if at all possible. Do you use the Nestle semi-sweet? What is the brand of Vanilla pudding powder?



  22. Julie,

    Probably the best thing you can do right now is just start - somewhere! Don't wait until you understand it all. It doesn't work like regular baking. You'll learn as you go. Look at the baking section on this site to get ideas for good recipes. Once you find a bread recipe you like, you can experiment with different flours - just leave the starch ratio and other things the same. One thing is for sure, homemade gluten-free bread is far better than what you can buy in the store.

    Good luck!