38carrots Posted November 10, 2015 Share Posted November 10, 2015 I can't find any information, but this is what our allergist told me. When DD was 7 and 8 yo she had a horrible rash that wouldn't go away with multiple dermatologists trying their best. When she was 9, with no support from the medical professionals, I put her off gluten, for a variety of ibehavioral ssues that I believed were caused by gluten, but no one would agree with me. Her behavioral issues improved dramatically, and within a couple of months the rash was gone too. I later read that it was a typical "gluten" rash. The allergist told me that I caused her anaphylactic reaction (this summer, after 4 years of being gluten free) by completely eliminating gluten. (DD tested anaphylactic to wheat and all the other grains that contain gluten, but the allergist would not call it a gluten allergy. According to him she has a "wheat allergy.") She doesn't react (or hasn't so far) when a food is labeled "may contain gluten" and she is fine with small amounts of gluten / what in a certain type of candy which uses wheat starch. DS has been gluten free for several years now as well. (He has severe stomach aches, the doctors were telling me that didn't know what it was, assured me it wasn't gluten, refused to test for celiac and wanted him on medication "that might help" with side effects. Since DD was gluten free at that time and doing so much better, I had him off gluten as well and he didn't have a stomach ache since.) We are going to see that same allergist to test him and to see if we can re-introduce gluten into his diet. Does anyone have any info on this? Personal experiences? Thanks. Quote Link to comment Share on other sites More sharing options...
MomatHWTK Posted November 11, 2015 Share Posted November 11, 2015 research allergy tolerance therapy 1 Quote Link to comment Share on other sites More sharing options...
Mama Geek Posted November 11, 2015 Share Posted November 11, 2015 My dh has been off gluten for many years. He was always sick before he got off it. Now if he gets a small amount he is in great pain for hours to days. He will likely never be able to go back to eating it, the only other foods that he has problems with are ones that bother his ulcer. ETA: I have heard for peanut allergies that are anaphylactic that the new thing is to start introducing them into a diet in very small quantities. 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted November 11, 2015 Share Posted November 11, 2015 Complete elimination of a substance with no symptoms can indeed cause issues down the road, especially with very young children. With your case, however, your daughter was already showing a reaction. Elimination wasn't a terrible response and it probably didn't do more harm than repeated exposure would have. Allergies are so individual, but I'm inclined to want to punch your doctor in the nose for blaming you for something that is, at the core, biological and not behavioral. Nobody causes allergies - the body begins attacking non-dangerous substances. One milder reaction doesn't mean a more severe one can't happen later. The anaphylaxis could just as easily have happened at the next exposure as a younger kid instead of now. Don't buy into the guilt. Quote Link to comment Share on other sites More sharing options...
Guest Posted November 11, 2015 Share Posted November 11, 2015 And if an allergist is willing to do a good challenge and possible desensitization therapy I'd go for it. It's not unheard of to increase in tolerance to some foods after a break. I'm currently taking rather enormous doses of l-glutamine and low dose naltrexone to help my immune system and to repair my gut. Already I can tolerate a few of my reactive foods much, much better. There are some great options out there especially if the reactions are not involving the airways. Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted November 11, 2015 Share Posted November 11, 2015 Do you think your daughter has dermatitis herpetiformis? DH is a skin rash condition that requires strict gluten avoidance like celiac disease. http://www.celiaccentral.org/skin/ 1 Quote Link to comment Share on other sites More sharing options...
MerryAtHope Posted November 11, 2015 Share Posted November 11, 2015 I don't buy it. I'd want a second opinion. 2 Quote Link to comment Share on other sites More sharing options...
38carrots Posted November 11, 2015 Author Share Posted November 11, 2015 Do you think your daughter has dermatitis herpetiformis? DH is a skin rash condition that requires strict gluten avoidance like celiac disease. http://www.celiaccentral.org/skin/ I think, but I can't be sure. It was on her buttocks. Itchy, little blisters. It wouldn't completely go away for 2 years of various treatments, and cleared withing a couple of months after she became GF. It wasn't misdiagnosed as any of the rashes listed in the article, and I forget what it was diagnosed as. However, I remember that at that time, based on my research, it looked like a very atypical presentation og what they were telling me it was. She didn't have any typical celiac symptoms and the family doctor wouldn't test for it, and I didn't insist. Back then it seemed easier and safer to go off gluten. :-( Quote Link to comment Share on other sites More sharing options...
38carrots Posted November 11, 2015 Author Share Posted November 11, 2015 Also, I wonder if it is typical to have celiac (if the rash was indicative of that) and allergy to wheat? Her allergic reaction invovles skin and airwaves. Nothing digestive. Quote Link to comment Share on other sites More sharing options...
38carrots Posted November 11, 2015 Author Share Posted November 11, 2015 research allergy tolerance therapy He did say that he wouldn't think about starting it in the next year, due to the severity of her reaction, I guess. Quote Link to comment Share on other sites More sharing options...
sbgrace Posted November 11, 2015 Share Posted November 11, 2015 It's the same thinking that is leading to the advice to avoid delaying peanut introduction to young kids. The idea is that the delay increases the risk of allergies. Similarly, once a child outgrows an allergy people need to keep in in the diet regularly so the child doesn't sensitize again. So he's possibly right. But in your case It's a moot point. She was reacting to gluten, so you had no choice but to pull her off. I can't feed my son his allergens so that he won't become anaphylactic. Wheat is a rare anaphylaxis. I wouldn't worry that your other child will develop it. Lots of people and kids avoid wheat/gluten without developing allergies or anaphylaxis. 5 Quote Link to comment Share on other sites More sharing options...
almondbutterandjelly Posted November 11, 2015 Share Posted November 11, 2015 I would fire your allergist and find a new one. Jerk. 2 Quote Link to comment Share on other sites More sharing options...
linguistmama Posted November 11, 2015 Share Posted November 11, 2015 He did say that he wouldn't think about starting it in the next year, due to the severity of her reaction, I guess. If she is allergic to wheat, but does not have celiac I would look into desensitization. We got a new allergist for my daughter with a peanut allergy who does Oral Immunotherapy for severe food allergies. The old allergist didn't recommend it so we switched to the new one. Many insurance companies cover it. 1 Quote Link to comment Share on other sites More sharing options...
Ms.Ivy Posted November 11, 2015 Share Posted November 11, 2015 Hormonal changes in puberty contributed to my wheat allergy (anaphylaxis). Prior to diagnosis, I ate huge amounts of wheat. So wheat avoidance sure didnt cause my anaphylaxis. Allergists don't like the gluten-free fad and maybe he's projecting frustration about that onto this case. I would get a new allergist, who will not condemn you for doing the only thing you could do when you noticed that wheat made your daughter sick. 3 Quote Link to comment Share on other sites More sharing options...
SparklyUnicorn Posted November 11, 2015 Share Posted November 11, 2015 I don't think I'd buy it either. Now she might get a major rumbly in the tumbly after not eating it for a long time and then eating it, but out right life threatening reaction? I'd want a second opinion too. Quote Link to comment Share on other sites More sharing options...
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