Aspasia Posted February 10, 2014 Share Posted February 10, 2014 Did that child's overall behavior improve once they were diagnosed and you eliminated gluten from their diet? My ds is almost four and he has been just miserable for the last two years, almost solid. He has his good days, but most of the time, he is just unhappy, mean, and difficult. We have tried all kinds of solutions and asked so many questions (of ourselves and others), and he just remains this way. We recently learned that he has an extremely high level of anti transglutaminase antibodies. The gastroenterologist is fairly confident that he has celiac, but we are doing an endoscopy this week to confirm. We have had an extra difficult week and I'm just wondering if there is any hope on the horizon. Dh and I are both at our wits end with this kid (actually, I feel like I've been at my wits end for a long time now). Quote Link to comment Share on other sites More sharing options...
fraidycat Posted February 10, 2014 Share Posted February 10, 2014 My DD is not diagnosed celiac, but through elimination we have discovered her sensitivity to wheat/gluten. Her attitude absolutely improves when we are strict on her diet. She feels better internally, and it shows externally. She is 11, and at a difficult age as it is, so it is very important to me to keep her diet as strict as possible so that we can co-exist. Quote Link to comment Share on other sites More sharing options...
Supertechmom Posted February 11, 2014 Share Posted February 11, 2014 YES! And YES and YES!!!!! My god eliminating gluten did more for The sad mean littles than anything else. O for it and be thrilled with the better attitudes! :) Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted February 11, 2014 Share Posted February 11, 2014 My sister has severe celiac disease, and her two kids were also diagnosed about two years ago. Her kids' behavior and attitudes improved dramatically when all gluten was removed from their diets. My sister told me that within one month her ds in particular was significantly calmer. Within six months they were totally different kids. Quote Link to comment Share on other sites More sharing options...
Caroline Posted February 11, 2014 Share Posted February 11, 2014 My dd was diagnosed 6 years ago when she was 3 years old. She is a nicer person now that she is not in pain. It isn't that her behavior and demeanor were terrible before we took her off gluten. However, there is a difference. Also, her asthma is far less severe and the frequency of attacks has diminished. Her excema has cleared up. I am so glad it was discovered when she was very young. Quote Link to comment Share on other sites More sharing options...
morgan Posted February 11, 2014 Share Posted February 11, 2014 My husband has Celiac disease and my daughter, although undiagnosed, is suspected of having it also. She was very lethargic and grumpy before going gluten-free; we started her on a gluten-free diet on a Friday and by Monday she was literally a different kid (she was 2 1/2 years old). Perhaps if she were older it would have taken longer to feel better, I am not sure. We have since discovered she has other food allergies/intolerances, especially dairy. Personally, all the people I know with Celiac can not handle dairy, and it doesn't seem to be a lactose issue, so I would suggest going dairy-free as well. I know it's a huge dietary change, but if it helps, it is so worth it. Good luck. Quote Link to comment Share on other sites More sharing options...
simplemom Posted February 11, 2014 Share Posted February 11, 2014 My son was tested for celiac this past week and I found out today that his labs were negative. But, the past weeks while waiting for the test and results, I have researched celiac symptoms and read that many children had behavorial issues that resolved quickly on a strict gluten free diet. While my son had different symptoms prompting the celiac blood test, he did get extremely hyper and irritable when he had to eat gluten everyday for the gluten challenge. The celiac.com website has a supportive forum for all kinds of questions related to testing, symptoms, transitioning to strict gluten free diet, and much more. I am sorry that your little one is going through this, but I have read so many encouraging stories how children diagnosed get so much healthier once going gluten free. Quote Link to comment Share on other sites More sharing options...
Aspasia Posted February 11, 2014 Author Share Posted February 11, 2014 My dd was diagnosed 6 years ago when she was 3 years old. She is a nicer person now that she is not in pain. It isn't that her behavior and demeanor were terrible before we took her off gluten. However, there is a difference. Also, her asthma is far less severe and the frequency of attacks has diminished. Her excema has cleared up. I am so glad it was discovered when she was very young. My ds has terrible excema, too. I'm really hoping the dietary change will help him. The gastro said it might but it might not--he says every kid is different and the celiac affects them all differently. Such a strange disease. Quote Link to comment Share on other sites More sharing options...
Grover Posted February 11, 2014 Share Posted February 11, 2014 one of the first indicators that my kids have been "glutened" is that they turn into grumpy, lethargic, argumentative lumps Quote Link to comment Share on other sites More sharing options...
NicAnn Posted February 11, 2014 Share Posted February 11, 2014 Absolutely. DH has Celiacs, and truly his only symptoms were irritability, anger, and depression. My daughter doesn't really have that issue. But she does have hyperactivity when exposed. Anyway, yes, mood changes are a big symptom! Quote Link to comment Share on other sites More sharing options...
momofsbandeg Posted February 11, 2014 Share Posted February 11, 2014 My ds has terrible excema, too. I'm really hoping the dietary change will help him. The gastro said it might but it might not--he says every kid is different and the celiac affects them all differently. Such a strange disease. Going gluten free has radically improved my daughter's eczema. Quote Link to comment Share on other sites More sharing options...
greenvneck Posted February 11, 2014 Share Posted February 11, 2014 My son's behavior changed dramatically within days of taking him off of gluten. He was four at the time and would have multi-hour tantrums every day, screaming on the floor, punching holes in walls, etc. Within three days he became the sweetest, kindest, most laid-back kid and has continued to be that way ever since (he is 12 now). I hope it works out as well for you!! Quote Link to comment Share on other sites More sharing options...
Aspasia Posted February 11, 2014 Author Share Posted February 11, 2014 My son's behavior changed dramatically within days of taking him off of gluten. He was four at the time and would have multi-hour tantrums every day, screaming on the floor, punching holes in walls, etc. Within three days he became the sweetest, kindest, most laid-back kid and has continued to be that way ever since (he is 12 now). I hope it works out as well for you!! Oh, how I hope to tell this same story when ds is 12! I've got the first part down--multi-hour tantrums, screaming on the floor, kicking walls. Quote Link to comment Share on other sites More sharing options...
TianXiaXueXiao Posted February 20, 2014 Share Posted February 20, 2014 We are on day 1 of going gluten free. My daughter has been experiencing terrible, chronic stomach pains and nausea for the past year and a half. We went to the doctor yesterday and finally got closer to determining the cause. They suspect it may be her gallbladder which is strongly linked to Celiacs. They are going to run more tests in a couple weeks and while I do not like the thought of my child having Celiacs, it would be wonderful to have a name for all of her maladies. I think we are committed to doing without gluten either way since we now know she is allergic to wheat. Quote Link to comment Share on other sites More sharing options...
Miss Cornelia Snook Posted February 20, 2014 Share Posted February 20, 2014 My daughter's behavior improved a bit after going gluten-free, but several months later when we finally took out dairy, too, we saw a huge change. It was a godsend--she had been a nightmare before that. I look back at those days and wonder how either of us survived! Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted February 20, 2014 Share Posted February 20, 2014 My son was tested for celiac this past week and I found out today that his labs were negative.If you mean blood labs, my understanding is that it doesn't mean very much. You can have positive labs, negative biopsy on endoscopy, or negative labs and positive biopsy. I hope to come back in a few weeks to report that mine have positive changes with removing gluten (my willpower is quite trashed at the moment, so I can't have products with gluten in my house). Quote Link to comment Share on other sites More sharing options...
simplemom Posted February 20, 2014 Share Posted February 20, 2014 If you mean blood labs, my understanding is that it doesn't mean very much. You can have positive labs, negative biopsy on endoscopy, or negative labs and positive biopsy. I hope to come back in a few weeks to report that mine have positive changes with removing gluten (my willpower is quite trashed at the moment, so I can't have products with gluten in my house). Interesting you brought this up again about my son's negative labs. I just dropped my celiac research when his labs were negative. Because dh has wheat allergy and we all eat less gluten than most people, my son' s labs had to be done after eating a normal amount of gluten for several weeks. I was very encouraged at the last MD visit because my son had gained weight and his anemia improved on supplements, plus he didn't have any asthma symptoms the month he was eating wheat everyday. But, even though the doctor didn't disregard my report of his hyperactivity and over emotionalism eating wheat everyday ( especially when I gave him100% organic whole grain bread), the doctor didn't recognize it as a valid wheat reaction ( he just suggested I cut back on wheat) . Through all this and reading the celiac board, I had my own concerns about having a wheat intolerance for myself. I know I have low lying dairy issues, so don't eat much dairy. When my son's test was negative, I dismissed my concerns about wheat being an issue with my health as being paranoid about having celiac. However, my gallbladder has been acting up more, started when pregnant with my son 8 years ago and the attacks have come and gone once in awhile through the years, but easy to manage with a careful lower fat diet, and when I cheat the attacks haven't been that bad. But the other day the attack lasted a whole day. Since it's been 8 years since I had my gallbladder checked, I got it checked at the MD office. The ultrasound showed no gallstones and no sludge, just a contracted gallbladder, which is unusual having fasted 16+ hours before the test. When the doctor ordered the lab work, I casually mentioned the only change in my diet was eating more wheat than usual during my son's recent gluten challenge. I told her since my son's tests were negative I didn't think celiac would be my issue with my gallbladder, that I was just paranoid about wheat being a hard to digest food. My doctor immediately suggested since I've been eating gluten regularly the past weeks that I have a celiac panel done, even though my son's labs were negative. I am expecting a negative test, but will know in a few days what the results are. A post above about celiac and gallbladder problems being connected has got me more suspicious of the results though. Sorry to be a hijack poster, but I am finding this thread informative for both OP and myself. I am interested if the OP's son has behavior improvement once able to be on a gluten free diet. Quote Link to comment Share on other sites More sharing options...
texasmama Posted February 20, 2014 Share Posted February 20, 2014 I recall telling our pediatrician that I did not like my youngest child until she went gluten free. I think she was in pain. She was a bit over two years old when I removed gluten from her diet, and suddenly, she was a much more likeable, less fussy person. Her reflux and horrible constipation also disappeared immediately. Quote Link to comment Share on other sites More sharing options...
umsami Posted February 20, 2014 Share Posted February 20, 2014 We did not notice any change, but there weren't any behavior issues before. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted February 20, 2014 Share Posted February 20, 2014 Did that child's overall behavior improve once they were diagnosed and you eliminated gluten from their diet? No, his behavior did not change. Removing his adenoids is what changed his behavior (unrelated to celiac). Personally, all the people I know with Celiac can not handle dairy, and it doesn't seem to be a lactose issue, I know you don't know me personally, but I have no problem with diary at all. I did when I was first diagnosed, and my doctor said it could take awhile before my intestines/gallbladder/pancreas healed enough to be able to handle diary (and high fat food) again. He was right. It took about a year, but now I can eat anything other than gluten of course. For those of you who are questioning celiac test results, you can ask for the genetic component test. If your child carries the celiac genes than there is always the possibility that s/he may develop (or has developed) celiac at some point in their life. If they do not have the genes then will not develop celiac. They may have a gluten sensitivity, but it wouldn't be celiac disease. Here's a breakdown on could have with wheat/gluten. Hope everyone finds answers soon. Quote Link to comment Share on other sites More sharing options...
celticmom Posted February 20, 2014 Share Posted February 20, 2014 My dd became much less hyper when we removed wheat from her diet. We have not had celiac testing done. Allergy testing was negative but I suspect an intolerance. I am very unwilling to feed her wheat just top find out that she cannot have gluten. Quote Link to comment Share on other sites More sharing options...
simplemom Posted February 20, 2014 Share Posted February 20, 2014 My dd became much less hyper when we removed wheat from her diet. We have not had celiac testing done. Allergy testing was negative but I suspect an intolerance. I am very unwilling to feed her wheat just top find out that she cannot have gluten. Whether or not to undergo a gluten challenge for a celiac test is highly individual, and I considered not having my son tested and see if his health improved on a gluten free diet. But, I read several threads on the celiac?com board of why they had themselves or their children tested even though it made them sick to undergo the testing. We homeschool, so school is not issue for us in being gluten free or not, but I don't know that I will never have to enroll our children in school. A main reason others tested their children was that celiac is considered a disability according to the school system (I don't know that for a fact, it's just what a read from parents of celiac children on the forum) and their schools did not have accommodate gluten free meals and abstain from gluten containing art supplies like clay and play dough in the classroom if a child wasn't diagnosed by a doctor with either non celiac gluten intolerance or celiac. Some parents filed 504 plans with their school systems, and had an annual meeting with the school staff and school nurse. Some parents had trouble with accommodation even with medical paperwork, but in the end the school had to legally accommodate for celiac. This would really be an issue in having a storage place for gluten free emergency meals in case the school had to go on lock down. On a more minor note, it would be an issue for the school to store gluten free foods in the nurse's office to offer the student a gluten free alternative at school parties. The other issue was that some medications contain gluten, and if your child were ever hospitalized for anything, the pharmacy would not have to provide gluten free medications without a diagnosis, and the patient could get sick from the meds. 2 other reasons were that when children undergo a gluten challenge and get diagnosed, their guts typically heal more quickly than adults, also they haven't had as much time to have other body systems damaged and develop into cancer or another autoimmune condition. If a child avoids gluten throughout childhood and then later decided to eat gluten because they were never sure they had celiac, they could get very sick having had the gluten out of their systems for several years and reintroducing it to their body, if in fact they do have celiac. Also, if that grown child wants to undergo a gluten challenge later in life to get a positive diagnosis for medical accommodations, the gluten challenge may be more difficult to do because their GI tracts aren't used to the gluten. In no way am I questioning judgement to not have the testing if anyone suspects their child has gluten issues, please, please, know that! It is individual. Plus, not having a celiac diagnosis, thus far, in our family, I don't know from experience the above scenarios listed to be true, it's just what I read when I was trying to decide about whether to do a gluten challenge for my son. Also, I have only been looking into this for one month while many others have researched it in much more depth for a much longer period of time before deciding to test or not to test for celiac. Then again, there is the fact that the tests have a high false negative rate, especially among children, and like someone said earlier in this thread, experience with gluten reactions is a more positive indication of an intolerance vs. the test itself. I just felt compelled to post this in response to the quoted post in the message to give the other view I found on why some choose to do the testing even though it is obvious gluten is a problem. Quote Link to comment Share on other sites More sharing options...
simplemom Posted February 20, 2014 Share Posted February 20, 2014 We are on day 1 of going gluten free. My daughter has been experiencing terrible, chronic stomach pains and nausea for the past year and a half. We went to the doctor yesterday and finally got closer to determining the cause. They suspect it may be her gallbladder which is strongly linked to Celiacs. They are going to run more tests in a couple weeks and while I do not like the thought of my child having Celiacs, it would be wonderful to have a name for all of her maladies. I think we are committed to doing without gluten either way since we now know she is allergic to wheat. Just to let you know, if your daughter hasn't been tested for celiac yet, but will be in a couple of weeks, she will need to keep eating gluten each day for the test to be positive. Then, if the blood antibodies are positive, the MD will likely order a biopsy to confirm small bowel villa damage, In which case your daughter will need to be eating gluten atleast 2 weeks prior to that test. I only say that because you mentioned having test run, but that you are day 1 being gluten free. I understand, that gluten needs to be consumed regularly until the biopsy is complete. After that test is performed, you can go gluten free for life regardless of if the biopsy is positive or negative for celiac. I know it is hard to feed your daughter what is poison to her body just to get diagnosed, but some considerations in continuing gluten a few more weeks are listed in my prior post this afternoon. Again, I am definitely not judging if you choose to stay gluten free starting today, just wanted to be sure you knew about needing to be on gluten till the biopsy is done. Quote Link to comment Share on other sites More sharing options...
Lisa in Jax Posted February 20, 2014 Share Posted February 20, 2014 Did that child's overall behavior improve once they were diagnosed and you eliminated gluten from their diet? My ds is almost four and he has been just miserable for the last two years, almost solid. He has his good days, but most of the time, he is just unhappy, mean, and difficult. We have tried all kinds of solutions and asked so many questions (of ourselves and others), and he just remains this way. We recently learned that he has an extremely high level of anti transglutaminase antibodies. The gastroenterologist is fairly confident that he has celiac, but we are doing an endoscopy this week to confirm. We have had an extra difficult week and I'm just wondering if there is any hope on the horizon. Dh and I are both at our wits end with this kid (actually, I feel like I've been at my wits end for a long time now). My son doesn't have celiac disease, but he is gluten intolerant. "On" gluten, he's all those ("unhappy, mean, and difficult") as well as hyper, loud, clumsy and angry. His sleep suffers, his bathroom *reeks,* and he's just hard to deal with. Nothing makes him happy; the smallest disappointments make him livid. When he's off gluten entirely, it's like he is a different child: funny, calmer, happy. Normal. FWIW, he may have a bit of a withdrawal period during which he is like a drug addict -- achey, grumpy, irritable. It gets better if you stick with it (and if he doesn't sneak gluten). HIH, Lisa Quote Link to comment Share on other sites More sharing options...
TianXiaXueXiao Posted February 20, 2014 Share Posted February 20, 2014 Just to let you know, if your daughter hasn't been tested for celiac yet, but will be in a couple of weeks, she will need to keep eating gluten each day for the test to be positive. Then, if the blood antibodies are positive, the MD will likely order a biopsy to confirm small bowel villa damage, In which case your daughter will need to be eating gluten atleast 2 weeks prior to that test. I only say that because you mentioned having test run, but that you are day 1 being gluten free. I understand, that gluten needs to be consumed regularly until the biopsy is complete. After that test is performed, you can go gluten free for life regardless of if the biopsy is positive or negative for celiac. I know it is hard to feed your daughter what is poison to her body just to get diagnosed, but some considerations in continuing gluten a few more weeks are listed in my prior post this afternoon. Again, I am definitely not judging if you choose to stay gluten free starting today, just wanted to be sure you knew about needing to be on gluten till the biopsy is done. Thanks, Simplemom. We are aware of this. We are just trying to get her comfortable for now, because she is in constant pain and the tests won't be ordered for two weeks. The doctor wants to see if she feels better at all from excluding wheat and then she will have her eat a little bit of gluten each day for two weeks before the tests, so her tests are actually in a month. They are waiting to order the tests because they have to sort things out with our insurance first. We signed up for Covered California and it was supposed to start in February but now they are saying it doesn't start until March :( , otherwise she would have ordered the tests the other day and recommended we hold off on excluding gluten. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted February 20, 2014 Share Posted February 20, 2014 Thanks, Simplemom. We are aware of this. We are just trying to get her comfortable for now, because she is in constant pain and the tests won't be ordered for two weeks. The doctor wants to see if she feels better at all from excluding wheat and then she will have her eat a little bit of gluten each day for two weeks before the tests, so her tests are actually in a month. They are waiting to order the tests because they have to sort things out with our insurance first. We signed up for Covered California and it was supposed to start in February but now they are saying it doesn't start until March :( , otherwise she would have ordered the tests the other day and recommended we hold off on excluding gluten. I would strongly recommend being the squeaky wheel on this one. Get the full celiac panel done asap as well as the biopsy. Keep pushing your doctor for the order asap. By delaying the testing but trying to get her more comfortable, you give the gut time to heal. The biopsy is completely dependent upon the technician finding damage. The tech will sample from numerous spots and then examine those various samples for damage. If your dd has celiac, her best chance of a diagnosis is now, while she has this much pain. If the gut heals, the damage will be harder to find. This is a reflection of the fact that none of the celiac tests we currently use are very good. They are all reliant on there being a LOT of damage, a LOT of gluten reaction. Quote Link to comment Share on other sites More sharing options...
................... Posted February 20, 2014 Share Posted February 20, 2014 Yep. Totally. And if I were you, I would assume that even if your child is not actually diagnosed as Celiac, that he has wheat sensitivity. My son is actually allergic to wheat, so it's slightly different, but he's also gluten sensitive (breaks out in a rash from Barley for example.) Quote Link to comment Share on other sites More sharing options...
kbutton Posted February 21, 2014 Share Posted February 21, 2014 I don't have kids with celiac symptoms yet, but I went gluten free after an elimination diet. I couldn't tolerate gluten when I added it back in. It was quite the surprise. My behavior is different. However, I did feel worse before I felt better. It's quite the withdrawal. I would assume your child has an intolerance no matter what a test says and try a GF diet after testing. If you continue to see behavior issues after being GF for a while, you might post what you're seeing on the Learning Challenges board. Sometimes dietary issues and other diagnoses go together. Quote Link to comment Share on other sites More sharing options...
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