1GirlTwinBoys Posted December 8, 2017 Share Posted December 8, 2017 (edited) What were the signs? My DH is celiac and we're having one of my twin boys tested next week for gluten intolerance (blood test through lab that specializes in these type of tests). He's 13 and having the following symptoms since entering puberty a couple years ago. It's either CRAZY hormones or gluten intolerance. Moodiness Anger Nervousness (pacing and not being able to sit still) Mild OCD behavior (He wants laundry room organized where they keep their backpacks and shoes. He gets mad if his siblings don't put their shoes away properly. Will straighten up the living room several times each day if things are out of place.) Very easily annoyed and complains a lot about trivial matters Trouble concentrating sometimes Edited December 8, 2017 by 1GirlTwinBoys Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted December 8, 2017 Share Posted December 8, 2017 Celiac (as you probably know) is autoimmune. It can have lots of non- gastrointestinal symptoms. Dd has anxiety, cardiac symptoms, skin rash (there is a specific celiac rash that some get). I have heard of other people having seizures and other symptoms. Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
fraidycat Posted December 8, 2017 Share Posted December 8, 2017 DD has moodiness and acne. The initial symptom several years ago that sent us on an elimination diet discovery mission was random and increasingly frequent bouts of dizziness. If/when she stays away from gluten (sometimes I “force†a detox period when the moods get to be too much) she’s more pleasant and has beautiful skin, but she’s a teenager who wants to be in charge of herself, so I can’t get her to stay gluten-free long-term. Quote Link to comment Share on other sites More sharing options...
J-rap Posted December 8, 2017 Share Posted December 8, 2017 I've never thought about this, but my two children who most fit the personality you describe are also my children with gluten intolerance. Now, they don't eat gluten much anymore (one -- never), and it's probably coincidental, but who knows? Neither has been tested for celiac and I kind of doubt they have it, but they definitely have a sensitivity toward it. In your case though, if celiac runs in the family, I wouldn't be surprised. (A third dc in our family was actually tested for celiac -- with an intestinal biopsy, but it was negative.) Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted December 8, 2017 Share Posted December 8, 2017 Celiac can definitely have neurological symptoms. DD was diagnosed at 4. Her major symptom at the time was absence siezures. EEG at the time showed hundreds a day. If you didn't pick up on the seizures you would notice ADHD behaviors. DS is not officially diagnosed. He has had genetic testing and has two genetic markers for celiac. He has numerous diagnosis, many of which are significantly worse when gluten is a regular component of his diet, among them anxiety, ADHD depression, organizational deficits. At one point, he had some serious OCD behaviors that interferred with the whole family's functioning. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted December 8, 2017 Share Posted December 8, 2017 Btw- if you are doing celiac testing, the person needs to be eating gluten in order to have an accurate test. The celiac specialist asked us to up the amount of gluten before the biopsy (which is more accurate than the ttg blood test) and which we had after the blood test for a definitive diagnosis. Sent from my iPhone using Tapatalk 1 Quote Link to comment Share on other sites More sharing options...
1GirlTwinBoys Posted December 8, 2017 Author Share Posted December 8, 2017 Btw- if you are doing celiac testing, the person needs to be eating gluten in order to have an accurate test. The celiac specialist asked us to up the amount of gluten before the biopsy (which is more accurate than the ttg blood test) and which we had after the blood test for a definitive diagnosis. Sent from my iPhone using Tapatalk He's just getting a blood test from CYREX LABS which specializes in these type of tests. From what I understand, the blood test will just show gluten sensitivity/intolerance with a # range on how sensitive to certain categories. The celiac text is an invasive test that checks the vili etc.. The outcome is the same that you will have to avoid gluten so I'm not going to put him through that. But yes, he needs to be eating a gluten diet for the test to be accurate. And I thought this was odd, but the lab told my DH that he shouldn't eat hot dogs within so many days of this blood test. Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted December 8, 2017 Share Posted December 8, 2017 I went off gluten first. My eight years of chronic sinus infections went away and never returned. I also stopped getting strep throat and my digestive issues at the time disappeared. I also felt happier. My brother was moody, irritable, had sinus congestion, and a speaking dysfluency of some sort (restarting sentences many times). These went away when he went off gluten. My dad and brother have little to no seasonal allergies (hay fever) as long as they avoid gluten. My dad says he also feels happier. My mom has arthritis in her hands and went off gluten a few years ago because one of her hands was starting to get stuck like a claw and she had a hard time kayaking. As long as she avoids gluten, her hands don’t hurt at all anymore. Both she and my dad now have thyroid antibodies (Hashimoto’s), so they are trying to avoid dairy now, too. Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted December 8, 2017 Share Posted December 8, 2017 When I got tested back in 1998 (the gluten dark ages), I had been off gluten for six months and the doctor never said to go back on for the blood test. Well, the test came back negative and now I will never be diagnosed officially. With all the health problems I’ve had over the years, there is no way I would eat it again to get diagnosed. I just hope I never get arrested or something and then they won’t accomodate my diet because I have no diagnosis. 1 Quote Link to comment Share on other sites More sharing options...
happi duck Posted December 8, 2017 Share Posted December 8, 2017 Thanks for this thread. I know someone struggling with many of the things mentioned above. Does one just go off gluten for a time and see if it helps? For sensitivity is all gluten equal or are some people sensitive to only certain things? Quote Link to comment Share on other sites More sharing options...
1GirlTwinBoys Posted December 9, 2017 Author Share Posted December 9, 2017 (edited) Thanks for this thread. I know someone struggling with many of the things mentioned above. Does one just go off gluten for a time and see if it helps? For sensitivity is all gluten equal or are some people sensitive to only certain things? You can do elimination diet for sure. But you really have to do your research because gluten is hidden in many foods/sauces. I did elimination diet for my husband 3 years ago after I suspected he could have a false - blood test. He noticed a HUGE difference within two days. I started the new diet on Saturday morning and by Monday he felt like a new person. Edited December 9, 2017 by 1GirlTwinBoys 1 Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted December 9, 2017 Share Posted December 9, 2017 You can do elimination diet for sure. But you really have to do your research because gluten is hidden is many foods/sauces. I did elimination diet for my husband 3 years ago after I suspected he could have a false - blood test. He noticed a HUGE difference within two days. I started the new diet on Saturday morning and by Monday he felt like a new person. However, it's not unusual to take longer for gluten to clear your system and really feel the effects. I often hear the suggestion of strictly following diet at least a month. And you should get a list of things that contain gluten -- it's everywhere, including soy sauce and licorice. 1 Quote Link to comment Share on other sites More sharing options...
1GirlTwinBoys Posted December 9, 2017 Author Share Posted December 9, 2017 (edited) However, it's not unusual to take longer for gluten to clear your system and really feel the effects. I often hear the suggestion of strictly following diet at least a month. And you should get a list of things that contain gluten -- it's everywhere, including soy sauce and licorice. Most definitely! He continued to improve over months. I was just trying to say that a lot of people, especially if there are severe digestive issues involved, can experience a relief in as soon as a couple of days. The key is to make sure it's 100% elimination. That means not so much as a bite of gluten food. My DH is so sensitive that he can't use the same toaster, or knife that has cross contamination on it. My kids have to be careful if they have just touched something with gluten and then use a serving spoon before him. It's that crazy! It's almost like the longer the person is off of gluten the more sensitive they become to it. Edited December 9, 2017 by 1GirlTwinBoys 1 Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted December 9, 2017 Share Posted December 9, 2017 Be forewarned that when weaning someone off gluten, it can cause temporary rage issues. My DD was just turned 3 and she was picking up chairs that I had no idea how she could lift and throwing them. Activated charcoal and epsom salt baths helped. Quote Link to comment Share on other sites More sharing options...
bethben Posted December 9, 2017 Share Posted December 9, 2017 I get muscle tenderness/spasms/joint pain when I have gluten. I had a licorice craving and ate a bunch. The same night my hips were hurting. They bothered me for a week. Licorice has gluten. So sad. Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted December 9, 2017 Share Posted December 9, 2017 Success! My mom’s brother has had sinus problems for decades, including at least one surgery. She has been after him to avoid gluten to see if it helped. After seven years of nagging, he finally tried it. It’s been two months, his sinuses are clear, his aches and pains (he’s about 59) are gone, and he feels great! Quote Link to comment Share on other sites More sharing options...
1GirlTwinBoys Posted December 10, 2017 Author Share Posted December 10, 2017 I get muscle tenderness/spasms/joint pain when I have gluten. I had a licorice craving and ate a bunch. The same night my hips were hurting. They bothered me for a week. Licorice has gluten. So sad. Sent from my iPhone using Tapatalk So does Gummy Bears. My DH gets joint aches too among a few other symptoms when in contact with gluten. Quote Link to comment Share on other sites More sharing options...
kitten18 Posted December 13, 2017 Share Posted December 13, 2017 So does Gummy Bears. My DH gets joint aches too among a few other symptoms when in contact with gluten. I haven't encountered gummy bears with gluten. The mayor brands Black Forest, Haribo, and Albanese are all GF. Quote Link to comment Share on other sites More sharing options...
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