Susann Posted February 19, 2013 Share Posted February 19, 2013 Also, "organic food" has NOTHING to do with how healthy it is. NOTHING. AT ALL. Making food from scratch also doesn't automatically make it better balanced. My next door neighbor makes all her food from scratch, and it's delicious but full of heavy cream and butter and low on veg. Celiac disease is not an allergy. It's an autoimmune condition. It cannot be caught by allergy tests. It is not a sensitivity, either. You have to do a specific test for celiac disease. Lactose intolerance is not an allergy or a sensitivity, either. It's a lactase deficiency. I am a sensitivity skeptic, too, but NO ONE denies the reality of celiac disease. We had a long battle w/ dr. saying dd was just constipated-which she was. But, they couldn't tell us why it kept happening while she was eating a diet high in fiber. Also, because I homeschool, I believe the dr. labeled me one of "those mothers" !By the time I found a dr. who would listen to us, her villi had been destroyed and she was basically starving to death. She was first diagnosed with a blood test-but that can give false results-the gold standard is an upper G.I. We're still dealing with the ramifications of her misdiagnosis. For anyone who thinks celiac is a possability-PLEASE FIND A REPUTABLE GASTROENTROLOGIST FOR AN UPPER GI. It is not an allergy it is an autoimmune disease that destroys the body and affects all systems!!! Please feel free to contact me regarding our journey-it sounds very similar to yours. Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted February 19, 2013 Author Share Posted February 19, 2013 We had a long battle w/ dr. saying dd was constipated. By the time I found a dr. who would listen to us, her villi had been destroyed and she was basically starving to death. She was first diagnosed with a blood test-but that can give false results-the gold standard is an upper G.I. We're still dealing with the ramifications of her misdiagnosis. For anyone who thinks celiac is a possability-PLEASE FIND A REPUTABLE GASTOENTROLOGIST FOR AN UPPER GI. It is not an allergy it is an autoimmune disease that destroys the body and affects all systems!!! Please feel free to contact me regarding our journey-it sounds very similar to yours. Thank you so much for your support! We are meeting with him one last time to see if he will work with us- the way our son needs. When I spoke with my pediatrician about my concern for how the GI was handling this, she was puzzled. She said in his report that he sent her, the next step would be an endoscopy/ upper gi. She absolutely agrees that this is the gold standard for celiac and that if he doesn't move forward on this for us, she is sending us to another pediatric GI. Is your daughter allergic to a lot of foods as well? Could it be because his system is so messed up? Quote Link to comment Share on other sites More sharing options...
tex-bex Posted February 19, 2013 Share Posted February 19, 2013 These kinds of allergies can absolutely be a by-product of celiac or other digestive issues. When the gut is compromised, it lets food particles into your system that are supposed to be kept in the gut. Your immune system detects them and develops defenses against them, which is an immune response. There are also many foods which cross-react with gluten, meaning your body *thinks* it has come in contact with gluten, and treats it as such. Some of my favorite resources for info are www.chriskresser.com, www.balancedbites.com, and www.whole9life.com Good luck finding the right path for your little guy!! Quote Link to comment Share on other sites More sharing options...
tex-bex Posted February 19, 2013 Share Posted February 19, 2013 Here's a really great video explaining gluten and autoimmunity: Quote Link to comment Share on other sites More sharing options...
Mama Geek Posted February 19, 2013 Share Posted February 19, 2013 I just wanted to throw one more thing in there. I had read years ago that problems with yeast can be similar to Celiac. I don't remember the book that I read it in, but it has always stuck in my mind. I hope you get things figured out soon. Quote Link to comment Share on other sites More sharing options...
plansrme Posted February 19, 2013 Share Posted February 19, 2013 VERY good idea!!!! We have a friend who loves to hunt- I'll have to raid his freezer and try some for L. You will make his day! Trust me--serious hunters have way more meat than they need, and next year when he wants to go hunting again, he can, with a straight face, insist that it is his Christian duty to do so. You know, just to help out poor little Jimmy. Terri Quote Link to comment Share on other sites More sharing options...
Ann.without.an.e Posted February 19, 2013 Share Posted February 19, 2013 Definitely be persistent on an upper GI and maybe even a colonoscopy. We were convinced DS had celiacs and so was the ped. but it was Crohn's disease. It is good to know what you are dealing with. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted February 19, 2013 Share Posted February 19, 2013 Thanks for the update Jessica. I'm sorry that you and your ds have to deal with soooo many allergies, but I'm thankful that you now know what's behind it. Being aware of the allergy issues, it could help to get the endoscopy done. Eosiniphilic (sp?) GI disorders are associated with allergies and should be found with an endoscopy. Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted February 19, 2013 Author Share Posted February 19, 2013 Terri, you are FUNNY! I needed that laugh- so thank you!!!! Tiramisu- Thank you for all of your support thru this. Tex-bex- thank you for joining in with such helpful and informative advice!!! And every single other poster to this thread_ THANK YOU!!!! I am truly grateful for your support and very helpful advice! You guys are great! My friend is over this morning trying to help me figure out what L can eat. I'm just so surprised that he is reacting to SO much. 21 yesterday, but they didn't test peanuts, pecans, and fish again. We already know those are very bad. What makes him react so much to stuff? We definitely have to find out if there is an underlying health issue that is weakening his little body. He is getting tested next week for enviromental allergies. Sigh. Quote Link to comment Share on other sites More sharing options...
tex-bex Posted February 19, 2013 Share Posted February 19, 2013 You may want to look into the GAPS diet and/or the autoimmune protocol. Both are designed for issues like these. Some of the sites I listed above will have posts on them, and will explain, in detail, why they are helpful, which may give you further insight into why he reacts to so many foods. I know it's frustrating, but keep at it! Quote Link to comment Share on other sites More sharing options...
Monica_in_Switzerland Posted February 19, 2013 Share Posted February 19, 2013 Hi, I didn't read through the three pages of responses, so I hope I'm not going over already-covered stuff. My son is Celiac- he had a positive blood test but the endoscopy was normal. Because he responded well to removing gluten, they classified him as Celiac despite the clear scope. I have no idea why your doc is ordering an x-ray!!! Never heard of this. Quote Link to comment Share on other sites More sharing options...
Ann.without.an.e Posted February 19, 2013 Share Posted February 19, 2013 I meant to say (and I apologize if this has already been mentioned, I haven't read very post)...be careful removing foods. We removed dairy and gluten from DS's diet when he was so sick and we did see some improvement. Then, the GI wanted lots of tests but he needed DS on gluten and dairy in order for the tests to be accurate. I had to put him BACK on it for 8 weeks before the test. It was a grueling 8 weeks and it also delayed everything by 8 weeks. Just a thought. Quote Link to comment Share on other sites More sharing options...
Susann Posted February 19, 2013 Share Posted February 19, 2013 Probably more information that you wanted but here's an old post re:dd (below this paragraph) She's had a long battle since I posted this but is healing and getting healthy. Because of her health, we had her take a gap year between high school and college. Physically she could not of gone into college-we had her take 4 classes as a communter student that about wiped her out. During this time she also had mono which lead to an inflamed liver & spleen and we discovered her gall bladder is low functioning. She's a 2nd semester freshman in a very rigorous program and doing well so far. The first semester, however, was a nightmare with cross contamination issues! For anyone who thinks celiac might be an issue, please, please, please get the diagnosis!! Don't take yourself/loved one off gluten, you have to be consuming to get an accurate upper gi analysis. Because my dd is diagnosed with an autoimmune disease we registered her with the disabilities office on her campus. The office has dealt directly with the professors twice so far when she has had to miss a class for a dr. appointment and a test because she was cross contaminated during lunch before the test and had to take her pain meds that knock her out. If she wasn't registered w/the disabilities office she would of failed the test which would affect her final grade/scholarship monies. I strongly advise anyone to get the diagnosis so that he/she is able to register with the disabilities office. My dd has major scholarship money involved so we need her bases covered. THIS IS THE POSTING FROM 3 YEARS AGO: My dd 17 was diagnosed a little over a year ago with celiac disease. She had had stomach pains that had progressively gotten worse over the previous two years. She had gotten to the point that she couldn't even get through a meal without laying down with the heating pad. She also developed anemia, and dairy intolerence among other symptoms. She was 5'5" and was down to 110 lbs even though she ate like a horse. We had been back and forth to the drs who kept saying that she was constipated and treating me like an overprotective mother (after all I do homeschool:glare:). Apparently, they also discussed bulima/aneroxia with her-and not me-while I was out of the room during one of the visits. Needless to say, we no longer use that dr! I finally had enough and took her to a gastroenterogolist (sp?). He walked in took one look at her (she is blond haired, blue eyes with a very, very fair complexion) then me and asked if we had any western European background. I found out later that certain European countries and Australia have a much higher occurance of CD. He then looked over her chart, talked to her and within ten minutes said that he thought she had celiac disease. She had a blood test that day that came back positive. We then scheduled an upper GI to validate the bloodwork and to assess the damage. The villi in her intestines had been almost completely destroyed. She was literally starving to death even though she was eating a very large well-balanced diet. Once gluten was eliminated from her diet she felt better within a day or two and substantially better with a month. To answer some of your questions: -Unless you are dealing with a dr very familiar with celiac disease it can take years to diagnose through the process of elimination of other conditions. -There are as many different symptoms of celiac disease as there are people who have it (much like the different styles of homeschooling:tongue_smilie:) which is why it tends to be diagnosed through the process of elimination. -The bloodwork can give a false negative. Only the upper GI can positively diagnose celiac disease and the amount of damage done. -Don't just stop eating gluten. If your symptoms go away, you don't really know if it's due to gluten or another factor. Without the upper GI, you don't know the amount of damage. -Here in the US a great deal of our medical research is done by the drug companies. There is not a drug to combat celiac disease so the companies aren't researching it. In large part, because there is not a drug to treat it, it hasn't been on the radar in the medical community. -No one else in our family-immediate and extended- has dealt with the health issues my dd has. No one, as far as we know, has celiac diease. -There are long term health ramifications such as infertility and increase in cancers among many, many other health issues. -The healing process varies per patient. My DD had another gluten panel done last month due to other health issues and was found to be gluten free. We opted not to have another GI to determine how much her intestines have healed since she is gluten free and healing can vary so much. - And, my pet peeve-IT IS AN AUTOIMMUNE DISEASE AND NOT AN ALLERGY-just like lupus, MS, etc. Your body is literally destroying itself. If you think it's a possibility that you have CD, I highly encourage you to overcome your fear of the upper GI and get a positive diagnosis just so you can eliminate it as a source of your health issues or treat it. This is not just for yourself but also for your children. A great resource is the book "Celiac Disease: A Hidden Epidemic". Also, you might want to read Elizabeth Hasselbeck's (sp?) book on her personal struggle to get diagnosed and then to treat celaic disease. I forget the name of the book but Elizabeth is the blonde on The View. Good luck in your search for answers to your medical issues! Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted February 20, 2013 Author Share Posted February 20, 2013 Charleigh and Susann, Thank you so much for your advice! I am so mad that I didn't insist on an upper GI a couple of months ago. He has been gluten free for so long now, but in all honesty, he could be getting some cross contamination. I HATE the fact I will need to put him back on gluten for a while for an accurate test. But, the more that I research celiac diease and hear about it being an autoimmune disease, we need to know. My mom has three autoimmune diseases; I know there is a good chance that when you get one, you can get another one. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted February 20, 2013 Share Posted February 20, 2013 I'm confused why the doctor didn't order an upper GI off the bat. I hear a lot how doctors (in the states) miss celiac. My primary doctor did. For over a year. I finally took it upon myself to go to a GI. The *first* thing he did was order a bunch of blood tests and an upper GI at the same time. He found out I have celiac. Honestly, with those symptoms I'm gobsmacked as to why an upper GI was not done. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted February 20, 2013 Share Posted February 20, 2013 Speaking gently--why would you purposely make your child really. really sick, hoping to cause enough damage in his intestines so that an invasive test can be performed? He will be in pain, and you will have to put him back on gluten for 6-8 weeks to get a "good" test. Please do not underestimate how much pain this could cause. My sister has celiac, and it's a big deal. Rather, put your energy into documenting his condition and insisting that a doctor give the diagnosis based on his history and on the improvement without gluten. Your best bet is in careful and exhaustive documentation, and a willingness to keep on talking to the doctor and insisting. My heart goes out to the little guy, and the torture he will experience, if you put him back on gluten. Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted February 20, 2013 Author Share Posted February 20, 2013 Speaking gently--why would you purposely make your child really. really sick, hoping to cause enough damage in his intestines so that an invasive test can be performed? He will be in pain, and you will have to put him back on gluten for 6-8 weeks to get a "good" test. Please do not underestimate how much pain this could cause. My sister has celiac, and it's a big deal. Rather, put your energy into documenting his condition and insisting that a doctor give the diagnosis based on his history and on the improvement without gluten. Your best bet is in careful and exhaustive documentation, and a willingness to keep on talking to the doctor and insisting. My heart goes out to the little guy, and the torture he will experience, if you put him back on gluten. Harriet, I really appreciate what you are saying. I can't stand to see my child hurting. I cry when he gets shots; I have GRIEVED over all of the pain he has been suffering. Ironically, my husband and I were just talking about this earlier. Is it worth putting him thru this for a definitive answer? I'm not sure we can thru with that. Is it possible to get a diagnosis based on his history and improvement? (There is improvement, but it still hurts.) I need to see if this is possible. I would LOVE him to never have to worry about eating it again. If he is celiac, I feel that we really need to find out. This will impact his entire life if he is. It's an autoimmune disease. But, if he isn't, why is he still having some pain? Is it from other food allergies? I don't know. This has been very hard on our entire family. We just simply want to do what's best for him. Sometimes, It's hard to know what is best Quote Link to comment Share on other sites More sharing options...
Susann Posted February 20, 2013 Share Posted February 20, 2013 Speaking gently--why would you purposely make your child really. really sick, hoping to cause enough damage in his intestines so that an invasive test can be performed? He will be in pain, and you will have to put him back on gluten for 6-8 weeks to get a "good" test. Please do not underestimate how much pain this could cause. My sister has celiac, and it's a big deal. Rather, put your energy into documenting his condition and insisting that a doctor give the diagnosis based on his history and on the improvement without gluten. Your best bet is in careful and exhaustive documentation, and a willingness to keep on talking to the doctor and insisting. My heart goes out to the little guy, and the torture he will experience, if you put him back on gluten. Yes, I agree it is a big deal and I would not reintroduce gluten without careful thought. If you have one autoimmune disease, there is a 30+% chance of having another one. Celiac disease is not present in our family history. The only other autoimmune disease in the extended family-as far as we know-is MS in a cousin. It just isn't on our radar. Also, people w/celiac have an increase chance of cancers, infertility, depression and a whole host of other life changing health care issues. With the celiac diagnosis, other health care issues may be treated and seen in a whole new light. I have yet to hear of a dr. that will diagnosis celiac w/out an upper GI-tho' they may say there are "gluten issues, sensitivity, allergies". This is not the same as celiac disease! The upper GI will not give a true picture of the extent of the issue without the the presence of gluten. Looking back now to what my dd has been through, if I had chosen to take her off gluten-yes, I would reintroduce it (and ask for pain meds) in order to have an accurate diagnosis. We're 5+ years into dealing with celiac and we've already seeing the life changing implications for our daughter. Quote Link to comment Share on other sites More sharing options...
Susann Posted February 20, 2013 Share Posted February 20, 2013 I'm confused why the doctor didn't order an upper GI off the bat. I hear a lot how doctors (in the states) miss celiac. My primary doctor did. For over a year. I finally took it upon myself to go to a GI. The *first* thing he did was order a bunch of blood tests and an upper GI at the same time. He found out I have celiac. Honestly, with those symptoms I'm gobsmacked as to why an upper GI was not done. -Here in the US a great deal of our medical research is done by the drug companies. There is not a drug to combat celiac disease so the companies aren't researching it. In large part, because there is not a drug to treat it, it hasn't been on the radar in the medical community. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted February 20, 2013 Share Posted February 20, 2013 -Here in the US a great deal of our medical research is done by the drug companies. There is not a drug to combat celiac disease so the companies aren't researching it. In large part, because there is not a drug to treat it, it hasn't been on the radar in the medical community. Yes, I keep hearing this. However, it has not been my experience. Well, with the exception of my former primary doctor who kept telling me I was "allowing my emotions and stress to cause my sickness." The GI I saw stated within 5 minutes of my initial visit with him that he suspected celiac. Afterwards I had to see an Endocrinologist and Cardiologist and both of them were very knowledgeable about celiac. The pedi GI my ds goes to is very knowledgeable about celiac as is the allergist he sees. My new primary doctor knows about celiac. Even my GYN knows a lot about celiac (probably because her own dd was just diagnosed with it). So, my personal experience has been that almost all our doctors are knowledgeable about it. Now, the ironic part is that my former primary, who missed my celiac diagnosis, is supposed to be an "expert" on celiac and gluten intolerance/sensitivities. I guess I threw her for a loop because I wasn't claiming to feel "bloated" each time she asked. I had so many other symptoms though that I'm amazed she didn't put the pieces together. Anyway, I just wanted to say that even though I keep hearing about USA doctors not knowing much about celiac, that has not been my family's experience. Thankfully. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted February 20, 2013 Share Posted February 20, 2013 One further thought-- My sister completely ruined her gall bladder in the years that she was sick before her diagnosis of celiac. She had to have it removed. Apparently it's fairly common for celiac sufferers. I do not know all that is risked ingesting gluten when you are celiac, but I do know that the process is agonizing, and that the damage is real and extensive and cannot always be reversed. Having watched my sister suffer for years prior to diagnosis, and her suffering now when she is exposed to even the smallest trace amount of gluten, I just cannot imagine voluntarily choosing to poison someone in that way. I do not mean to cause offense with inflammatory language--I am speaking from the context of watching my sister's illness and suffering. If you choose this path, then choose it having considered the cost very, very carefully. Quote Link to comment Share on other sites More sharing options...
Ann.without.an.e Posted February 20, 2013 Share Posted February 20, 2013 You are facing a very difficult decision. We faced it....we were there. Our first thought was, "why go through the pain in order to know 100%" We will just say he is celiac, we will move on with life. A good friend of mine is a pediatrician and even he recommended skipping the procedure. Our pediatric GI really wanted it done though. DS was 75% better on the GF diet, but the other 25% still bothered us. I kept thinking maybe cross contamination but then I was so certain he had been 100% GF. It was always a question in my mind. So we chose to have the scope. It wasn't an easy procedure. Would I do it again? YES. For my DS it was crucial. He did NOT have celiac's he had Crohn's disease. We have had to go way beyond a gluten free diet in order to help him. He is on a gluten free, grain free, dairy free, sugar free diet. Celiacs and crohn's are so similar in symptoms that it is difficult to tell them apart. I can't remember...has your DS had any labs taken? What was tested and was anything abnormal? Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted February 20, 2013 Author Share Posted February 20, 2013 You are facing a very difficult decision. We faced it....we were there. Our first thought was, "why go through the pain in order to know 100%" We will just say he is celiac, we will move on with life. A good friend of mine is a pediatrician and even he recommended skipping the procedure. Our pediatric GI really wanted it done though. DS was 75% better on the GF diet, but the other 25% still bothered us. I kept thinking maybe cross contamination but then I was so certain he had been 100% GF. It was always a question in my mind. So we chose to have the scope. It wasn't an easy procedure. Would I do it again? YES. For my DS it was crucial. He did NOT have celiac's he had Crohn's disease. We have had to go way beyond a gluten free diet in order to help him. He is on a gluten free, grain free, dairy free, sugar free diet. Celiacs and crohn's are so similar in symptoms that it is difficult to tell them apart. I can't remember...has your DS had any labs taken? What was tested and was anything abnormal? He has had his iron checked (it is low). They tested his thyroid, which was fine. The blood test for celiac was negative. Besides his allergy testing, I can't remember off the top of my head what else he has had done. And, thank you, for being so understanding about what a hard decision this is for us. I just want him to get better, and so far, we are seeing only some progress. There is definitely more going on in his poor little body. Quote Link to comment Share on other sites More sharing options...
Ann.without.an.e Posted February 21, 2013 Share Posted February 21, 2013 He has had his iron checked (it is low). They tested his thyroid, which was fine. The blood test for celiac was negative. Besides his allergy testing, I can't remember off the top of my head what else he has had done. And, thank you, for being so understanding about what a hard decision this is for us. I just want him to get better, and so far, we are seeing only some progress. There is definitely more going on in his poor little body. I am really surprised they haven't checked more than that. How is his weight? Growth? Quote Link to comment Share on other sites More sharing options...
jessicamcc Posted February 21, 2013 Author Share Posted February 21, 2013 I am really surprised they haven't checked more than that. How is his weight? Growth? He is tall and very thin. When you put it like that, it makes me wonder, too. I think he must be deficient in other areas. He is very pale with dark circles under his eyes. Quote Link to comment Share on other sites More sharing options...
Ann.without.an.e Posted February 21, 2013 Share Posted February 21, 2013 Can you call and see if they checked any other labs and maybe request some more blood to be drawn? I would suggest a basic test for inflammatory markers (SED Rate and c-reactive protein, etc). It will clue you in if there is an inflammatory problem. His pediatrician can have this done. Quote Link to comment Share on other sites More sharing options...
gracesteacher Posted March 12, 2013 Share Posted March 12, 2013 Curious what those tests will tell... My dd test neg for celic however she reacts to to has lots of food allergies. height she is 10% for age and weight outside of birth she has been either negative to 5% at 6. She is hyper (so was daddy at that age and calmed with age) and always hunger but at 6 she is 34 to 36lbs Lots of allergies Lots of GI issues Quote Link to comment Share on other sites More sharing options...
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