BibleBeltCatholicMom Posted September 1, 2012 Share Posted September 1, 2012 For years and years we thought my daughter had allergies (headach, dizziness, swollen glands, mucus, swollen eyes, sleep apnea, et c). AND' For years and years we thought she was lactose intolerant (yes . . . well . . . you know, very bad tummy trouble). AND Since she was a toddler she has gotten these AWFUL red bumps near her elbows and knees that don't look anything like the text book celiac rash but are super painful, super itchy, and in the right places. AND For the last several months she has had off and on bouts of over all achiness and nearly debilitating fatigue. We put her on a no processed, no gluten, no dairy, no sugar diet. In just two days she felt really really good. Then we were advised to put her back on her regular diet and have her tested for celiac disease. I did. Over the next two days she slept 20 hours! The bags under her eyes had bags. She felt hiddeous. and so did I. I'll never ever put her back on a regular diet again. And having resolved such a thing, that seems to eliminate the possibility of an accurate test. Well, so be it. If she feels great, why bother? On the other hand, I can see that it could be something else. Anyone else decide not to test? Did you change your mind? Why? Tell all! Quote Link to comment Share on other sites More sharing options...
frugalmama Posted September 1, 2012 Share Posted September 1, 2012 We're in this boat too with both dd and myself. Chronic unexplained stomach issues, joint pain, multiple food allergies, growth issues in dd, fatigue and generally feeling horrible. I know I feel horrible when I eat too much wheat products. I am not testing or cutting out at this time because there simply aren't enough alternatives out there without gluten that don't contain something else we're allergic to to be able to eat a even semi-balanced diet unless I made everything from scratch myself. And I simply am not capable of doing so right now, with everything else on my plate. Quote Link to comment Share on other sites More sharing options...
dbmamaz Posted September 1, 2012 Share Posted September 1, 2012 I have known people who went both ways. I used to hang out on the celiac boards and a lot of people there said there is no real reason to take the test . . .unless having that label will help you be more careful with the diet. It sounds like you are already going to be very careful! I was tested for allergies and celiac and showed up as allergies. My teen was tested and both came out negative, but a mail-order test showed him reacting to gliadin, which is what your body turns gluten in to. My youngest one . . . he's off additives and gluten and dairy. Because it worked. i dont feel any need for any tests. its a personal choice imo. the only serious reason I've heard (other than so you and/or family takes it seriously) is that if you are in england and have a doctors note you can get money for gf foods. Quote Link to comment Share on other sites More sharing options...
Karen in CO Posted September 1, 2012 Share Posted September 1, 2012 My tiny dd has had severe "tummy troubles" her whole little life. When she was a baby, I stopped eating dairy which helped her a lot, but she always stayed down at the 3 percentile on weight in the growth chart. As she grew, we kept her off diary, but knew she had some other food problem. She also continued to have "tummy trouble" that would often have us at the doctor's office. After a lot of reading and talking to my family doctor, we did a gluten free trial. After a short time, her "tummy trouble" improved dramatically. She gained 5 pounds over the course of 5 months which was astounding growth for her. Our doctor said to keep her off gluten. SHe was accidentally exposed (as in dh forgot and gave the kids bagels). She had 3 days of the horrible pain and diarrhea that used to be common for her - if you've read about celiac you know the kind I mean. It isn't the normal kind. We went back to our family doctor and talked again about testing. He said that at this point, testing her would just be cruel and that if she didn't have celiac, she certainly reacted to gluten strongly enough to keep her off of it forever. When we went to the allergist this summer, he agreed that the testing wouldn't change his recommendations based on her reactions so he wouldn't recommend the test. If we had not taken her off gluten first then he would have recommended the testing, but the reaction she has is just as good of an indicator as a positive test. She did end up having additional food allergies that we're now dealing with. He's pretty certain that she'll outgrow those as her insides continue to heal from the damage the celiac disease has done. Quote Link to comment Share on other sites More sharing options...
greenbabybottoms Posted September 1, 2012 Share Posted September 1, 2012 I am postponing testing my children but I do think it's important that the celiac test is eventually done. There can be other complications and diseases that become more likely if one has celiac disease so I feel like having that diagnosis is beneficial so you can keep a close eye on things. Diseases like rheumatoid arthritis, intestinal cancers, thyroid disease, type I diabetes and there are several others are all more likely in a patient who has celiac disease so I would want to stay on top of things. My mom and sisters all have celiac disease and I just got my first positive blood work for the disease (mine has always been negative before) and part of having celiac is going every few years for endoscopys so that you can keep a close eye on things like intestinal health. Quote Link to comment Share on other sites More sharing options...
kokotg Posted September 1, 2012 Share Posted September 1, 2012 I wish we'd had at least our youngest (the one who has the strongest and most immediate reactions to gluten) tested before we stopped eating gluten. It just seemed like such a long shot, particularly since his dad tested negative. I still would be surprised if he has celiac as opposed to just pretty serious gluten sensitivities. I have no intention of putting him back on gluten at this point, but, fwiw, there are a few reasons I'd like to know for sure if he has celiac. We'd be more careful. We're already pretty careful, and don't have gluten in our hosue, but we do stuff like let him eat fries cooked in shared fryers at restaurants. Sometimes he gets a stomach ache from this, usually not. If it's just a short lived stomach ache, not a huge deal; if it's doing hidden damage to his body every time it happens....then, yeah, not good, of course. I also think that a diagnosis would make things easier in certain situations as he gets older. There's a summer camp near here specifically for celiac/gluten intolerant kids, but you need to have a note from a doctor in order to go there. I think our ped would probably give us one just based on my account of his reactions, but I'm not sure. And then when he goes to college, I wonder if it will be an issue that he doesn't have a diagnosis when he needs special food. Also, I'm just a curious sort. Quote Link to comment Share on other sites More sharing options...
BibleBeltCatholicMom Posted September 1, 2012 Author Share Posted September 1, 2012 yes. I do think it would be cruel to do it but I do agree it's something that needs an eye kept to it. Thank you for helping me think this through! Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted September 1, 2012 Share Posted September 1, 2012 When she goes to college she may need medical documentation to get gf food in the cafeteria. More and more colleges are offering gf options, but some schools require documentation. The would be true if you entered ps and wanted to buy lunch. But I would put it off. They are coming up with better testing. perhaps by the time your dd needs a confirmed dx, there will be a test that does not require making your dd sick. Quote Link to comment Share on other sites More sharing options...
jenbrdsly Posted September 1, 2012 Share Posted September 1, 2012 The Celiac test is really just a simple blood test, so if you have insurance and concerns about gluten I would definitely go for it. I have tested negative for Celiac, but definitely am gluten intolerant. So if you talking about kids, I would say "yes" for the blood test, but "no" for the scoping procedure. Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted September 1, 2012 Share Posted September 1, 2012 The Celiac test is really just a simple blood test, so if you have insurance and concerns about gluten I would definitely go for it. I have tested negative for Celiac, but definitely am gluten intolerant. So if you talking about kids, I would say "yes" for the blood test, but "no" for the scoping procedure. You have to be eating gluten to test positive. I don't know, but I the recommendation was at least a month. That's a long tme to make your kid sick. Then to be officially dx you have t have the biopsy. So you stay eating gluten until that pcedure is completed. The blood test is only a screening Quote Link to comment Share on other sites More sharing options...
Soror Posted September 1, 2012 Share Posted September 1, 2012 The Celiac test is really just a simple blood test, so if you have insurance and concerns about gluten I would definitely go for it. I have tested negative for Celiac, but definitely am gluten intolerant. So if you talking about kids, I would say "yes" for the blood test, but "no" for the scoping procedure. The blood test isn't very accurate though. Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted September 1, 2012 Share Posted September 1, 2012 I have a gluten intolerance. It has never been officially diagnosed, it may not be celiac disease. My dad and brother are also undiagnosed. We think my dad's mom also had it (based on symptoms), but she died before any of us had even heard of gluten. When my oldest was born, I decided to keep him off gluten for a few years. The idea was to wait until he was old enough to tell us if he felt sick or had symptoms. I've read so much more bad stuff about gluten since then that we still keep our kids off it. It's much easier for them to accept going places and not being to eat what others are having since it's always been this way for then and since they see me have to avoid it, too. (It doesn't hurt that it cuts way down on their ability to eat junk food!) Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted September 1, 2012 Share Posted September 1, 2012 I should add that both my kids are much healthier than I was at their ages. When they are adults, they can decide if they want to risk eating gluten. I don't want to assume it doesn't bother them and then find out in ten years I was wrong and have then be sick like I was. Quote Link to comment Share on other sites More sharing options...
Lolly Posted September 1, 2012 Share Posted September 1, 2012 My ds was blood tested twice. Both times negative. Elimination diet brought no relief. The doctorS were sure it was celiac anyway. I made the appointment, purchased the before hand medications, and called and cancelled the scoping appointment. After internet researching on my own for a long time, I put him on a severe irritable bowel diet. It worked. Now if he can stick to it, difficult for a teen, he doesn't have trouble. But sometimes...:tongue_smilie: Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted September 1, 2012 Share Posted September 1, 2012 (edited) How long has she been gluten free? The blood tests have many, mnay false negatives. One of the tests looks for anitbodies (SIgA) to gliadin, a protein in gluten. Some people, such as me, have low levels of SIgA, so will likely show up as a negative result, only because our bodies don't make enough antibodies. You could also try a stool test. I did a digestive panel through Diagnos-Techs and it showed a gluten intolerance even though I had been gluten free for years. That means I wasn't strict enough and was probably get food at restaurants that had been cross-contaminated. The stool panel also showed I was very deficient in digestive enzymes, and some other problems as well. In any case, it can take years for a celiac patient's guts to heal, depending on the damage. Please consider having your daughter take digestive enzymes and extra vitamins and minerals for a few years. If she has celiac, her intestines haven't been properly absorbing nutrients for a long time. Aim for feeding her nutrient dense foods, such as meat, veggies, fats, and bone broths. You also might look into the GAPS diet (for a few weeks or months) and L-glutamine to help heal the gut. Finally, many people with celiac also have casein (a milk protein) intolerance and have to avoid dairy (like me) or can't tolerate dairy until they have healed for a few months or years. Edited September 1, 2012 by HoppyTheToad Quote Link to comment Share on other sites More sharing options...
BibleBeltCatholicMom Posted September 1, 2012 Author Share Posted September 1, 2012 There is also a test requiring a skin biopsy. We're considering that but she'll have to have another outbreak which, of course, we all hope won't happen. Well, I do think I will have her tested in the future but not for now. I think healing is on the menu now. And yes, we're going strictly no gluten, no dairy, no sugar (and we're already vegetarian). When she feels better we can start trying one thing at a time back into her diet. Quote Link to comment Share on other sites More sharing options...
kalanamak Posted September 1, 2012 Share Posted September 1, 2012 The blood test isn't very accurate though. :iagree: If my child was doing well on a different diet, I wouldn't test for celiac (I'm rather anti-going to the doctor), but I would make sure he had a diet rich in the vitamins I've seen low in celiacs: A, K, and D. At least for a few months. If he wouldn't eat those foods, I would give supplements. I'm a fan of food sources, but I'm not a purist. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted September 1, 2012 Share Posted September 1, 2012 Youngest DD had basic celiac and wheat allergy testing at 9 or 12 mos. because she was off-the-charts small and then a more extensive celiac and food allergy panel at 2 1/2 when she was showing a developmental delay. Both times the results came back negative and she had no obvious GI problems so I kept her on a regular diet. Then a month before her 3rd birthday she was diagnosed with autism and I decided to try gluten- and dairy-free. Within 6 weeks she had gained 6 lbs. and 1/2". She went from <3rd percentile for both weight and height to 25th percentile for weight and 5th for height. She has since gained even more weight and height but I don't know what percentiles those correspond to. But she went from wearing a size 18 mos. in December to a 4T in April. Our pediatrician says that she sees this kind of dramatic "catch-up" weight gain frequently with gluten-intolerant kids who go GF. I wish that I had tried GF earlier for her, but I didn't know that there was such a thing as non-celiac gluten intolerance and there weren't any obvious GI symptoms, just the slow growth (and my whole family is on the petite side so that wasn't a huge red flag either). Quote Link to comment Share on other sites More sharing options...
Anne Posted September 1, 2012 Share Posted September 1, 2012 Testing may also be needed if your dd ever contemplates a military career. Anne Quote Link to comment Share on other sites More sharing options...
jenbrdsly Posted September 1, 2012 Share Posted September 1, 2012 :iagree: If my child was doing well on a different diet, I wouldn't test for celiac (I'm rather anti-going to the doctor), but I would make sure he had a diet rich in the vitamins I've seen low in celiacs: A, K, and D. At least for a few months. If he wouldn't eat those foods, I would give supplements. I'm a fan of food sources, but I'm not a purist. :iagree::iagree::iagree: I'm taking a prenatal vitamin now, even though that ship has sailed. :) Eating GF means that I basically never eat anything fortified, plus I have some bad deficiencies to catch up on. At least the blood tests showed that! Quote Link to comment Share on other sites More sharing options...
anmom Posted September 2, 2012 Share Posted September 2, 2012 I don't want to scare anyone, but wanted to share my experience. My daughter had alot of the "symptoms" too. We tested negative for celiac with the blood test but we decided to go ahead with the scope. I am so thankful that we did. While she still was negative we found out that she had chronic liver disease and ulcerative colitis. Now we are able to treat her for the right thing. While I hope noons has an experience like we have, I do think it is important to know if there is something else. Quote Link to comment Share on other sites More sharing options...
BlueTaelon Posted September 2, 2012 Share Posted September 2, 2012 You have to be eating gluten to test positive. I don't know, but I the recommendation was at least a month. That's a long tme to make your kid sick. Then to be officially dx you have t have the biopsy. So you stay eating gluten until that pcedure is completed. The blood test is only a screening Not anymore, the blood test is now considered more sensitive then the biopsy. It indicates the disease long before severe damage is done, plus if the damage is patchy and they biopsy the wrong area... I'd just get the blood test but even if its neg go back on the diet. If she's only been off gluten a few days its fine to test now as it takes weeks to several months to test neg once you have antibodies. *me Celiac and GF 12 years and parent of 1 celiac kid and 1 gluten intolerant kid Quote Link to comment Share on other sites More sharing options...
jenbrdsly Posted September 2, 2012 Share Posted September 2, 2012 I don't want to scare anyone, but wanted to share my experience. My daughter had alot of the "symptoms" too. We tested negative for celiac with the blood test but we decided to go ahead with the scope. I am so thankful that we did. While she still was negative we found out that she had chronic liver disease and ulcerative colitis. Now we are able to treat her for the right thing. While I hope noons has an experience like we have, I do think it is important to know if there is something else. :crying: Glad you caught it. Quote Link to comment Share on other sites More sharing options...
Runnermom Posted September 2, 2012 Share Posted September 2, 2012 Just wanted to add my two cents. If you suspect celiac, getting a diagnosis allows for you to, when you do your taxes, write off the price difference between gluten free and a comparible item (gluten free bread around here costs twice that of a regular loaf, so you can write off that difference). If you go to the celiac disease foundation website there is more info about this. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted September 2, 2012 Share Posted September 2, 2012 You can do what I did and have the genetic blood test done to see if she has the "celiac" genes. If you have the genes you are at risk to develop celiac (but it doesn't mean you will....just means you might). If you don't have the genes then it would be very rare for you to develop celiac. So rare that doctors pretty much say you won't. So, if your dd has the genes you can assume her issues are from celiac. If she doesn't have the genes you can assume it is gluten sensitivity that is not celiac. Only one of my sons has the genes. I was sure my oldest had celiac because he has symptoms for it. He doesn't have the genes, but he did test highly allergic to wheat. So, even though he gets really really sick when he accidently eats wheat (among other foods) I feel better knowing that he is not suffering from tissue/organ damage, and that he's not at increased risk to the host of other issues that come with celiac. Anyway, the genetic blood test would give you an idea of the chances of her having celiac without having to put her back on gluten. Quote Link to comment Share on other sites More sharing options...
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