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About averyevansmom

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  1. Thanks everyone so much for your insight. The results can be so confusing to interpret. I have put in a call to the nurse at Enterolab. Hopefully I get a call back soon. My son has been gluten free since mid January. He had an upper endo (biopsy) as well as colonoscopy done early January. At that time his iron levels were critically low (8) normal range being 49-181. He was a miserable infant with severe skin reactions to certain foods I ate (dairy specifically), I nursed. He has no food allergies. He threw up, had diarrhea, bleeding blistery rashes on his bottom, sometimes he was constipated, sandy, grainy poops, horrible, horrible smelling to the point I was actually asked to leave a children's consignment store. He was checked at 9 mo's for Hirschprung's disease. Negative. This has been an ongoing process for 3 years until my HUSBAND AND I decided to start the gluten-free diet. The GI said NOT to do the gluten-free diet and wanted to prescribe medication. For what I don't know, because they still had no answer for us. They insisted he didn't have Celiac because his test's, blood and biopsy were neg. The doctor who performed the biopsy came out of the operating room and told me and my husband that she saw some patchy spots in his small intestine and a lot of inflammation. They diagnosed him as having duodenitis. After much of my own research, I've found duodenitis is found in 8.5% of celiacs and many have lesions found in the small intestine. He has been on rice milk for quite some time, probably before the gluten-free diet. He loves it. He can't have ice cream or yogurt either. He is doing great now. His pediatrician is amazed and we have switched pedi gi's. He's a little more open minded. My question now is, and I've googled it, is, what is the difference between gluten sensitive and celiac disease. From what I gather is gluten sensitive is undiagnosed celiac. That is to say, all regular testing (blood, biopsy) is negative. And in the case of celiac, the tests are positive, whether it be biopsy or bloodwork, it's confirmed. Does that sound accurate?
  2. It's been a while since my last post. Just got my son's results. Does anyone have any insight? Does it mean what I think it means? That I haven't been fighting the doc's all this time for nothing? Thanks for anyone's help in advance. Becky Gluten Sensitivity Gene Test HLA-DQB1 Molecular analysis, Allele 1 0603 HLA-DQB1 Molecular analysis, Allele 2 0604 Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6) Interpretation Of HLA-DQ Testing: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.
  3. Will he react to tiny amounts of whey or something else that he never reacted to before? I think it may have been the huge amount of broccoli he had last week. He had it three days in a row and he has a huge bowl off it with supper. I've not let him have it since and he had two normal bm's yesterday. I also have not given him his iron (feel rotten about that) just to see if it was that making him solid. Nope. The last day of broccoli was this past Monday. Is pasty poo still considered abnormal? I've read everywhere that it is. I just hope the broccoli was the reason and not something else so I'm not beating my head against the wall again. I would hate to think it was Crohn's. I sent this lenghty article to Evan's dr. from a conference that Dr. Fine held in Dallas March 3-5 about his research. He said he would read it and give me his take on it. I hope he has an open mind and doesn't shoot it down. Once I hear back I'll let you know the outcome. Thanks for your response.
  4. Does anyone's children have bouts of unexplained D (pasty not loose-watery) after being on the diet for a while? He was doing so well. Is this common or a fluke. I know or am pretty certain he has not been glutened. I've been keeping a food journal, but he's been having D off and on the past week week and a half. I'm starting to think maybe I'm barking up the wrong tree and all the doctors have been right. My husband thinks otherwise. He thinks that because he's done so well all along that we shouldn't worry. My concern is the iron. I don't want his solid movements to be from the iron. He's been on the iron since early December and we sarted the diet Jan 16th. His first ever solid bm was the middle to end of January. I don't know what to think anymore. Maybe it is Crohn's. I hope it isn't. He seems so much NOT to fit that description. D was so bad tonight that his bottom was raw again and we had to immediately put him in the bath. He was screaming. I'm at a loss.
  5. My husband remembers giving it to him last week and then again last night. He's just been kinda off all weekend. I never liked the idea of the protein anyway, he's only 3. I know my husband probably only put a small amount in his rice milk, but I wonder if it was enough for a reaction. He just gets such a kick out of it. He's not allergic to milk, but we know he can't have it. He's actually never had reg. milk. Either soy, and now rice. It doesn't sit well with him. Yogurt or ice cream either at this point. Am I really just banging my head against the wall? You're always wondering, am I doing the right thing? Is it actually this or something else. It's really taking over my life. My son on the other hand goes about his business playing, having a blast. being as carefree as a 3 year old should be, thankfully. At least he feels better. It's more than I could've hoped for at this point.
  6. I have an unusual queation. My husband will take the kids downstairs to the gym when he worksout and the kids think they workout as well. When they come up, my husband makes his protein shake, well of course the kids want one. He makes then a small one of course. My question being, since my son cannot handle any dairy other than hard cheese, and this is "WHEY" protein as follows (whey protein concentrate, ~50% B-lactoglobulin, ~20% lactalbumin, ~1.5% lactoferrin, whey protein concentrate, among other weird stuff) do you all think this could be the culprit of my sons on-off potty issues since Friday. He's done this in the past but I've never thought to look at the jug of protein. I've looked it up on line and some say if you're lactose intolerant not to use it, other sites say it's okay. I guess it depends on the brand. This one seems to have quite a lot of lactose and whey stuff in it. Some say the whey proteins could be as much as 15-20% lactose. I'm worried as to why my son is having such problems since Friday. I'm thinking maybe it is something else and not related at all to celiac disease. Maybe the GI is right, but then I remember how wonderfully the diet has worked until then. I hope this is just a minor set back. I'm making myself nuts. If it's not one thing it's another. I've checked and rechecked all the food he's eaten the past few days. Ugh. If anyone has any info on the whey I'd appreciate it. By the way it does say gluten free.
  7. Everyone here is so awesome! Thanks a bunch. I received a response from the RN at Enterolab. I guess Dr. Fine is out of state. She was very heartfelt and helpful with her answers. My response to people from now on will just have to be to pi** off if they don't get it or don't want to. I think the biggest hurdle were my in-laws. They're set in their ways and, well. I think now they're at least trying to understand except they don't get the sensitivity of it. I guess they have to start somewhere. Thanks again
  8. I've been driving myself nuts with all this. I guess my biggest worry is what people are going to think. I guess I have to get over that. I've also read about the gene theory. I try to read as much as possible and sometimes there's so much contradiction. It's hard to figure it all out. I've read that inflammation in the duodenum (small intestine) is found in celiac disease. My son was found to have chronic duodenitis with possible erosion. He does not have ulcers. There wasn't anything found anywhere else. We're still waiting for the endomysial antibody test to come back. I'm sure this will be negative as well. I don't know where the tests are sent. Maybe he is non celiac gluten intolerant. It's pretty much the same in the way of symptoms right? I'll just have to wait and watch. I'm still considering enterolab. Anyone elses biopsy show inflammation such as my sons?
  9. Hi Robbin and thank you I am considering the enterolab test. However I am curious as to why they can't "diagnose". I sent an email to them asking this question tonight. In the meantime, if anyone has the answer for me I'd appreciate it. The diet is the only thing that has made my son feel better. Don't get me wrong, he has his ups and downs, and I can usually find the culprit (9x's out of 10). I'm just looking for answers to questions I've had for 3+ years. He's had problems (colic, diarrhea, stomach trouble, reflux, food sensitivities, on and on) since birth. Again, I may try giving him food with gluten in it. I'll be wracked with guilt if he becomes violently ill and it lasts longer than a day but I think I need to know I'm doing right by him and make sure the diet is what's making him better.
  10. My 3 yo had two gene tests run by his ped gi at Children's in Boston. Both were negative. The doctor said because they are both negative the likelyhood of Celiac is 0%. I've read there could still be a very small percentage that have celiac disease even after negative results. He said continue with the diet because it works but at this point we cannot officially diagnose him with celiac disease. How can I tell people he's sick when I don't even know what he's sick from? I'm so frustrated and confused. I feel like all the time and effort I've put into this isn't being recognized or validated by the doctor and it upsets me. Don't get me wrong, I like the Doc, however, I'm sick of this not knowing, or limbo state. My son reacts to anything that we find isn't on the safe list. It's not in our minds. The inflammation in his duodenum, the severe anemia (which still requires daily doses), the diarrhea since birth, the bloodwork for inflammatory response was 4x what it should have been. His bloodwork last week shows everything is getting a bit better everytime. He's gained a little over 3lbs since december. If it's not celiac disease what else. All his other tests were negative. We're waiting now on his endomysial bloodwork, which I'm sure will also be neg. Anyone else have all this turn into something else? I'm at a loss, kinda ready to throw in the towel and try to give him something with wheat only, just to see how he reacts, then something with barley only, etc, etc. I just don't know. Sorry for the ranting. I'm so confused.
  11. Very interesting, I'll have to look into that. I'll be calling the doc on Monday if they aren't gone. In the meantime I'm gonna have to pick up new vitamins for him since he takes one immediately after he takes his nasty liquid iron. I'll probably head up to Walmart after he gets out of his Jumping Beans class today. Lil Critters Gummi Vites? Okay, got it. Thank you.
  12. Yeah, I guess I do need to call my doctor. If by Monday they are still hanging around, then I'll call. I have to reschedule my yearly anyway. Thanks guys. What a pain in the you know what. I'll have to pick up some of those gummi vites. I'm sure the kids will love them.
  13. These things are still hanging on and aren't going anywhere. They are so itchy and the big one hurts. What gives. It's been 8 days. Help.
  14. I've never had hives so that could be a possibility. Do you know how long they last? I've had these suckers for 8 days and counting and they show no signs of fading. They are so itchy and the big one kinda hurts.
  15. Thanks Jerseyangel for making me feel better. His iron level was 8 back in December and will hopefully be retested when we bring him back to Boston Children's on the 16th of this month. I have another question for you regarding myself. I'm the only family member who has followed the diet since it's inception. I took my daughter to Starbucks last week for a treat because no one is allowed to eat gluten in the house, and I ate a scone. That night I developed a nickel sized welt on my hip that itches like crazy. The next day I started with these pencil eraser sized bumps randomly spaced all over, mainly on my stomach, thighs, couple on lower legs, few on my chest (armpit, bra area) low low back and a couple on my inner forearms. All in all about 20-25. This week I shared a Mr. Goodbar with my daughter and I've just found out today they contain gluten. These things will not go away and they are itch as all heck. They were round with red inside and now they are very dry in the middle. No one else has any as I thought maybe they were bug bites, but I'm the only lucky one. Any ideas. I think it's rather odd. Thanks for all your input.
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