Need Some Help...(very Long)
Posted 24 February 2006 - 07:09 AM
Our 3yo ds has multiple food allergies. When he was about 13mo, he was tested and wheat was positive, but much lower compared to all of the other foods that he was positive to. We kept wheat in his diet for awhile, but eventually took it out due to vomiting and diarhea. We tried Spelt and he screamed all day long. I took wheat out, but gave him other glutenous grains. He would not eat rye after while. Barley was the only grain that he seemed to sometimes tolerate. I began reading about wheat allergy and gluten intolerance. About this time, he developed a blistering rash on his bottom. I took him to the ped and he dx impetigo. After two unsuccessful courses of antibiotics, I decided to treat it on my own. Several people told me that impetigo is highly contagious. None of the other 7 people in the house ever had it. I read about impetigo and noticed that he did not have the classic yellow oozing and crusting. I DID notice a usual pattern. I could see places on his bottom where I knew the sores were going to come up before they were sores. Then the sores would come, blister, then were open sores, and finally they would heal and then go away. The more I read, the more they sounded like DH. At this point, I took him off of gluten entirely and the sores disappeared. Last Jan, we did a wheat challenge as both his skin test and RASTs were neg. He did well until the end when he became very irritable, but I chalked it up to the fact that eating a box of plain shredded wheat and being stuck in the drs office all day is not fun. We came home and began feeding him wheat. I had to make everything that he ate due to his allergies. We did this for several weeks. I noticed a behavioral change in him, but though it was most likely due to his age (2yo at the time). I have episodes of flu-like symptoms and pain (which we are not sure of the cause) and so I was unable to make wheat foods for him for 2wks. At about the 2wk mark, I suddenly noticed that ds was happy!! Looking back, I saw how he had been rolling on the floor crying. I would pick him up and he was unconsolable. He would bite my other children for no reason. When I commented to dh, he said "I am sure he was having abdominal pain!!" He has once again been gluten free since. My allergist wants ds on wheat. I really want to have him tested, but I know he needs to be on wheat. I have 3 other children (all on wheat) who I am concerned about, but nothing they have warrents a scope IMHO. One dd has been tested twice with the Ttg test and was found to be normal. I stil wonder about her. She is below the 5th % for height.
I gave him wheat for the first time today in a long time. I have decided that I will give him wheat until I see problems and then we will go to the ped and talk. I hate to see him go through this, but I feel it is what I need to do How long before I can expect to have a valid test? Should I keep a diary? How do I convince the ped to test him after I have put him back on wheat? I am hoping that if ds comes back pos, then we can figure out if this is the problem with my other kids.
Posted 24 February 2006 - 07:56 AM
I'm sure there are others on here who can offer more advice.
Posted 24 February 2006 - 08:11 AM
I am so sorry to hear of your struggle. As a parent I know first hand how horrible it is to watch your children suffer. Do some research and talk to a good gi doc who understands celiac. Then take a deep breath and do the best that you can do. That is all any of us can do.
Posted 24 February 2006 - 08:33 AM
Posted 24 February 2006 - 08:44 AM
If he has Celiac, a wheat allergy test will come back negative.
Posted 24 February 2006 - 08:49 AM
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Posted 24 February 2006 - 10:16 AM
If he's getting dermatitis herpetformis, don't bother with the endoscopy, have the sores biopsied by a good dermotologist. If he's got DH, he's got celiac, and he's got to stay gluten-free. If he doesn't have DH, he could still have celiac, but regardless of symptoms, he'd need to be eating wheat for three months to have a reasonable confidence that a endoscopic biopsy will pick up intestinal damage. The skin test and RAST tests mean absolutely nothing when testing for celiac disease, though, so they never could have told you anything.
Thanks so much for this reply. This answers some questions. If the rash returns, I will definitely be speaking to the dr about it and asking for a biopsy. I know I should have asked way back then. I am sure if ds gets sick from the wheat that the dr will listen to me when he sees how he gets.
Posted 24 February 2006 - 10:29 AM
so something that is wheat free does not necessarily mean it is gluten free!
gluten can also be hidden in many places (soy sauces, modified food starch, etc)
good luck, we are all rooting for you!
Posted 24 February 2006 - 10:42 AM
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