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Need Some Help...(very Long)

7mommy

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7mommy Rookie
7mommy
Posted

I am a mommy to 6dc. I have Hashimoto's and my middle dd does as well. I am posting for some direction.

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.

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happygirl Collaborator
happygirl
Posted

one note---you might want to see a GI instead of an allergist as Celiac and DH is an autoimmune disorder, not an allergy.

I'm sure there are others on here who can offer more advice.

good luck!

hez Enthusiast
hez
Posted

Please keep in mind that allergies and celiac are very different (apples to oranges). Have you talked to a gi doc? Also keep in mind that if your dd was off of gluten her test results will not be accurate.

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.

Hez

7mommy Rookie
7mommy
Posted
  • Author

I do know that Celiac and Allergy are different. The problem we are having is that all allergy tests are coming back neg. The pos test was only sligthly pos and I suspect it was a false pos. His reactions have never been immediate and are all GI (mostly lower GI). I am not sure what IS going on. I have read about gluten intolerance that is NOT Celiac. At this point I would really like to rule it out or find out for sure what is the problem. The allergist is no help with this problem and is pressuring us to give him wheat. I can't see a GI without the ped telling us to. I have decided to give it to him, but I need to know how long it is necessary before the test is valid. I do believe that wheat could be a problem without him having Celiac, but with the wierd blistering rash and the Hashimoto's and other Autoimmune diseases in the family, I am suspicious.

happygirl Collaborator
happygirl
Posted

has your child been tested for Celiac? Or only allergies?

If he has Celiac, a wheat allergy test will come back negative.

tarnalberry Community Regular
tarnalberry
Posted

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.

7mommy Rookie
7mommy
Posted
  • Author
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.

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happygirl Collaborator
happygirl
Posted

another little tidbit that you might already know....if it is dh/celiac, the problem is gluten, which is found in wheat, rye, barley, malt, and oats.

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!

hez Enthusiast
hez
Posted

Sorry I misunderstood your post. I have heard that you need to be eating gluten for 3 months to get a accurate blood test. My Mom's test came back boaderline because she had gone gluten-free before the test (about 2 months gluten-free). There are several families that have decided to change their kids diet without a firm diagnosis. Based on history and behavior alone. I can only imagine how frustrating this is for you. I am sorry.

Hez

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