dancer67 Posted December 3, 2012 Share Posted December 3, 2012 My daughter has upper GI Pain. She has had upper and lower GI studies, ultrasounds, bloodwork, and an endoscopy. Negative for H. Pylori and Celiacs. She is 20 yo. But is Celiacs different then having a Gluten intolerance? They had her on Prilosec, but took her off of it becaus there was no evidence of anything. So they diagnose her with Functional Dyspepsia. Her pediatrician is sending her for more bloodwork, because this is the second time this month she has been sick with a fever, body aches, her stomach really hurts, and headache. He is sending her for all the Immmune Tests, plus another sed rate. I don't know if her stomach is making her sick, or the other way around. I don't even know if I believe she has Functional Dyspepsia. Other then possibly having a Gluten Intolerance, what else could it be? I went to Celiac.com. I am not getting much information there on gluten free foods. What website do you suggest I use to get a list of Gluten free foods, and a list of foods to stay away from? And this problem started over the summer. She said evertime she ate her stomach hurt for an hour or two. That is still happening, but when she was on the two a day Prilosec, she was 100% better. Her GI Dr.is putting her on Amitryptiline. I would like to try eliminating gluten out of her diet and see what happens. But do you just all of a sudden develop a gluten intolerance? Her upper stomach hurts so bad today she can barely stand. Her GI Dr said if Amitryptiline doesn't work, she will have to go in for further studies. Well, I don't know what that means, or what else this could be. I have such bad health anxiety, I am thinking the worse like cancer, or an autoimmune disorder such as Lupus or something. If someone could help me, I would appreciate it. Quote Link to comment Share on other sites More sharing options...
Parrothead Posted December 3, 2012 Share Posted December 3, 2012 Yes, Celiac is different from gluten intolerance. But barely. Think of celiac as an allergy and gluten intolerance as well, an intolerance. Say it was milk instead of gluten. Someone with a milk allergy couldn't have milk or would end up in the ER with life threatening symptoms. While the person with the intolerance would have gas an bloating and discomfort. Neither will purposely consume dairy as they are both affected but one is worse than the other. A person with celiac can't have gluten. A person with gluten intolerance doesn't want to have gluten due to the discomfort. And like most every thing else there are degrees. A person who is intolerant may be just a hair's breadth from full blown celiac disease. I don't know much about celiac disease, but I thought it was mostly a lower GI problem rather than an upper GI thing. I may very well be wrong. I have no idea what else it could be. I'll pray for you and the doctors to find the cause and treatment. :grouphug: Quote Link to comment Share on other sites More sharing options...
lexi Posted December 3, 2012 Share Posted December 3, 2012 My mom suddenly developed symptoms and had problems with gluten in her 40s. She went GF and is so so much better. Our family is GF as well. I highly recommend trying a GF diet for at least a month to see if it helps. PM me and I can try to help (nursing a baby now so can't type much) Quote Link to comment Share on other sites More sharing options...
dancer67 Posted December 3, 2012 Author Share Posted December 3, 2012 The GI Dr said yes, it is usually a lower GI problem(She might have diarrhea or constipation) but she has neither of that. No lower GI symptoms. Only above her belly button. Her stomach used to only hurt when she ate. Now, the past two times she has been sick, her stomach hurts ALL the time. Lexi, thank you for the offer. Quote Link to comment Share on other sites More sharing options...
dancer67 Posted December 3, 2012 Author Share Posted December 3, 2012 Is there a good website where I can get a list of GF foods?(reputable) Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted December 3, 2012 Share Posted December 3, 2012 The GI Dr said yes, it is usually a lower GI problem(She might have diarrhea or constipation) but she has neither of that. No lower GI symptoms. Only above her belly button. Her stomach used to only hurt when she ate. Now, the past two times she has been sick, her stomach hurts ALL the time. Lexi, thank you for the offer. Not true. The doctor needs to update his/her info on celiac. There are 250 symptoms and a person does not need to have all of them. I did not have much lower GI problems. It was mostly upper GI. The worst symptom was the anxiety/panic attacks. They were bad. I do hope they figure out what's wrong. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted December 3, 2012 Share Posted December 3, 2012 Is there a good website where I can get a list of GF foods?(reputable) No. Foods (packaged stuff) change ingredients all the time. Easiest way to avoid gluten in the beginning is to just eat foods that are naturally gf. Meats (i do not eat Purdue chicken), but be careful with processed stuff like hot dogs and sausages. Fruits, veggies, rice, potatoes, quinoa. Make your own salad dressings. Once gf for a while, you can try foods made gf like cookies and stuff. Foods made gf are not nearly as good as the original (for the most part). Ancient Harvest gf quinoa pasta is really, really good. Quote Link to comment Share on other sites More sharing options...
dancer67 Posted December 3, 2012 Author Share Posted December 3, 2012 What do I need to look for on a label so I know it is GF? (like cottage cheese or Ketchup etc) And I didn't believe GI Dr either when he said she would be having trouble in her lower GI Tract. Thing is, she is starting amitryptiline, and if we go GF at the same time, we won't know what is working. The med, or GF. We are going to try the medication first as we will know over the next 3 days if it is working. If it doesn't, then we are going GF. But I need all the info I can get on this. And since I have IBS, I would do GF as well with her. It is also going to take a week for her immune bloodwork to come back. I am so worried. Quote Link to comment Share on other sites More sharing options...
athena1277 Posted December 3, 2012 Share Posted December 3, 2012 This should help. Starting GF can be very intimidating. Try to focus on what she can have and foods that are naturally GF, like fruits/veg, meats, dairy. Safe foods for GF Non safe ingredients for GF The not safe list is the most important. It took me several months, but I have it memorized, so it's easy to check labels. Quote Link to comment Share on other sites More sharing options...
Unicorn. Posted December 3, 2012 Share Posted December 3, 2012 Some other thoughts, the upper pain and not being able to stand remind me of my gall bladder attacks. Also, have they ruled out parasites? You might want to consider removing dairy along w/ the gluten, at least for a month. :grouphug: I hope you get some answers and she feels better soon! Quote Link to comment Share on other sites More sharing options...
dancer67 Posted December 3, 2012 Author Share Posted December 3, 2012 They have ruled out her gallbladder. Both through ultrasound/bloodwork/endoscopy. Not sure how to test for parasites? And Athena, thank you for the links. But something still tells me something might be going on with gallbladder. Quote Link to comment Share on other sites More sharing options...
Unicorn. Posted December 3, 2012 Share Posted December 3, 2012 They have ruled out her gallbladder. Both through ultrasound/bloodwork/endoscopy. Not sure how to test for parasites? And Athena, thank you for the links. But something still tells me something might be going on with gallbladder. Just FYI- they "ruled out" my brother's gallbladder for two years before finally saying that it was his gallbladder. Not sure about the parasite testing either, but there have been people on the board who have experience. Maybe start a new thread? Good luck. Quote Link to comment Share on other sites More sharing options...
Cricket Posted December 3, 2012 Share Posted December 3, 2012 I thought most gluten issues were lower GI too but people are so different. Like a pp said, focus on foods that are naturally g/f like rice, corn, potatoes, meats, vegetables and fruit. If she does eat something processed like canned soup, condiments, etc., read labels carefully. Obviously anything "wheat" is out (wheat starch, wheat protein, wheat germ) but so are oats, barley, rye, modified food starch, malt, alcohol made from wheat or barley like beer. It might be easier just to avoid any processed foods to start with unless it is clearly labeled "gluten-free." If the Prilosec made her feel better, I wonder why the doctor had her stop taking it. Quote Link to comment Share on other sites More sharing options...
elegantlion Posted December 3, 2012 Share Posted December 3, 2012 I have gluten issues and GERD. Gluten causes my joints to hurt and swell. I can eat it without GI issues, but if I cheat too much I have terrible joint pain. This issue didn't start until my 40s either and I noticed pain after eating pizza and spaghetti. GERD is different, it's acid reflux and can be caused by certain foods like chocolate, caffeine, and tomato based products. Prilosec is helpful for that. That causes stomach upset, heartburn, and coughing & sore throat at night. Quote Link to comment Share on other sites More sharing options...
dancer67 Posted December 3, 2012 Author Share Posted December 3, 2012 I have heard Gallbladder can be an issue with diagnosing. So when I got to the lab today, I had the lab call the Dr. to add on Lipase and Amalayse(SP?) testing again just in case. But when she had her Endo, it was viewed and looked fine. It also looked fine on ultrasound, and her last Lipase levels were normal, but they forgot to do the amalayse. We should have bloodwork results back in a few days. All of her symptoms present gallbladder. The stomache ache after eating, then getting sick and her stomach goes from hurting only when she eats, to all the time. Sounds llike gallbladder, but they are not going to just take it out on a hunch. Maybe I will start a new thread on gallbladder issues. And thank you for all the info on GF dieting. Quote Link to comment Share on other sites More sharing options...
dancer67 Posted December 3, 2012 Author Share Posted December 3, 2012 I thought most gluten issues were lower GI too but people are so different. Like a pp said, focus on foods that are naturally g/f like rice, corn, potatoes, meats, vegetables and fruit. If she does eat something processed like canned soup, condiments, etc., read labels carefully. Obviously anything "wheat" is out (wheat starch, wheat protein, wheat germ) but so are oats, barley, rye, modified food starch, malt, alcohol made from wheat or barley like beer. It might be easier just to avoid any processed foods to start with unless it is clearly labeled "gluten-free." If the Prilosec made her feel better, I wonder why the doctor had her stop taking it. The GI Dr would not keep her Prilosec 2X a day when there is nothing physically wrong with her according to endoscopy. That is a large dose of a PPI to be on long term. He thinks trying amitryptiline would be better. I know I take the same thing for my IBS and it works for me. She has never had any lower GI symptoms. Never. Always above her belly button. But I am still keeping the GF diet in the back of my head. I also had them do bloodwork again for gallbladder. Thank you so very much to you and everyone. I am one worried mama. Quote Link to comment Share on other sites More sharing options...
dbmamaz Posted December 3, 2012 Share Posted December 3, 2012 here is the 'how to go gluten free' guide from my favorite gluten free website Quote Link to comment Share on other sites More sharing options...
dancer67 Posted December 3, 2012 Author Share Posted December 3, 2012 Thank you dbmamaz :laugh: Quote Link to comment Share on other sites More sharing options...
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