What The Heck Is Going On?!

[Lfrost]

Ok, so we are 9 days gluten-free (plus 3 more days prior with one day in between where we gave him gluten). We had been having great results. My son's constipation is pretty much gone, and he says it doesn't hurt to go anymore. He has quit wetting himself. He used to be a very grumpy and defiant introvert, lately he has been very sociable and happy, even singing. He talks all the time now, I didn't know he had such a big vocabulary. He definately seems more 'with it' (we thought he seemed behind academically compared to his peers, but doesn't seem that way anymore).

But now...last night we went to the store and it was like a switch flipped in him, he was literally bouncing off the walls! It was like a manic hyper. I chalked it up to him being tired because when we got in the car to go home, he crashed out hard and it was a little past bedtime.

Then today! He has been a wild child all day! Granted, while he is hyper he is very happy, but it has been extreme! My son's blood test came back negative for celiac, but his allergy test came back with low allergies to wheat, egg, milk, soybean, peanuts, and fish/cod. I have been diligent in not feeding him gluten and I have tried with the others, but will admit that I have not been as diligent. Also, when he woke up this morning, his puckered dry lips were back (they went away when we went gluten-free). He was also stuffy yet sniffly all day (he has gotten a sore under his nose from the sniffles today alone). He was a little bit stuffy the last two days, too.

We have been keeping a food diary and the only thing I can see that he has had all three days and was new in his diet is these darn fruit snacks. He loves Angry Birds and we found some Angry Bird fruit snacks (bribery for making it to the potty) while we were at the store. I was so happy that they have NON of his allergies in them. We are going to eliminate those starting tomorrow to see if that is it, but oh my goodness!

Do you guys think it can be these fruit snacks? Is there something else that this could be? The fruit snacks didn't have any of his allergies, could he be allergic to something more? I hate to say it, but it almost made me want to feed him gluten today to get the boy to calm down! (A friend actually jokingly said, "for crying out loud, give that child a piece of bread or something!")

[1desperateladysaved]

Ok, so we are 9 days gluten-free (plus 3 more days prior with one day in between where we gave him gluten). We had been having great results. My son's constipation is pretty much gone, and he says it doesn't hurt to go anymore. He has quit wetting himself. He used to be a very grumpy and defiant introvert, lately he has been very sociable and happy, even singing. He talks all the time now, I didn't know he had such a big vocabulary. He definately seems more 'with it' (we thought he seemed behind academically compared to his peers, but doesn't seem that way anymore).

But now...last night we went to the store and it was like a switch flipped in him, he was literally bouncing off the walls! It was like a manic hyper. I chalked it up to him being tired because when we got in the car to go home, he crashed out hard and it was a little past bedtime.

Then today! He has been a wild child all day! Granted, while he is hyper he is very happy, but it has been extreme! My son's blood test came back negative for celiac, but his allergy test came back with low allergies to wheat, egg, milk, soybean, peanuts, and fish/cod. I have been diligent in not feeding him gluten and I have tried with the others, but will admit that I have not been as diligent. Also, when he woke up this morning, his puckered dry lips were back (they went away when we went gluten-free). He was also stuffy yet sniffly all day (he has gotten a sore under his nose from the sniffles today alone). He was a little bit stuffy the last two days, too.

We have been keeping a food diary and the only thing I can see that he has had all three days and was new in his diet is these darn fruit snacks. He loves Angry Birds and we found some Angry Bird fruit snacks (bribery for making it to the potty) while we were at the store. I was so happy that they have NON of his allergies in them. We are going to eliminate those starting tomorrow to see if that is it, but oh my goodness!

Do you guys think it can be these fruit snacks? Is there something else that this could be? The fruit snacks didn't have any of his allergies, could he be allergic to something more? I hate to say it, but it almost made me want to feed him gluten today to get the boy to calm down! (A friend actually jokingly said, "for crying out loud, give that child a piece of bread or something!")

Check the ingredients on the fruit snacks for artificial flavors or colors. They can do such a thing. They also can contain a large amount of natural fruit sugar.

[Mom2J112903]

Is he getting a lot of carbs any longer? Or is his diet less carbs now? I wonder if he is going thru a yeast die-off.

[Sesara]

If it makes you feel any better, after the first week of gluten free, where we had horrendous temper tantrums, our son was much more even tempered too, but in the last few days, he has been a bit out of control too (for a 22 month old). However, I have also noticed a big improvement in his stools, which I have been waiting for desperately - they're not perfectly normal yet, but they aren't the grainy sandy loose stuff we've been dealing with for months. So I'm thinking maybe the two are related.

I've also read that 3 weeks is around the time when a lot of parents who went gluten free reported a big improvement - before that point, it seems that every child is variable in the level of improvement. So while it's good to look for triggers, it could also be part of the healing process.

[squirmingitch]

It could also be part of the gluten withdrawal process.

[kareng]

Maybe he just feels so much better, he's doing all the things he would have done? Parenting may have to change a bit. What we can let slip with a sick child, we may not be able to with a more active one.

I have 2 boys and I spent a good bit of time everyday wearing them out. You may have to find more physical activities for him now that he is becoming the kid he should be. Hopefully, once he gets used to his new energy, he will regulate it some.

As for the sniffles, has he been outside a lot? That's probably where that energy should go. . He may have a pollen allergy?

[Lfrost]

Check the ingredients on the fruit snacks for artificial flavors or colors. They can do such a thing. They also can contain a large amount of natural fruit sugar.

I wonder if this could be it? His regular fruit snacks have no artificial flavors or colors, these ones have Red 40, yellow 5, blue 1, and red 3. They also have artificial flavor

[Lfrost]

It could also be part of the gluten withdrawal process.

I didn't even know there was such a thing?! It would make sense, I read that our brain can process gluten similar to Morphine.

[Lfrost]

Maybe he just feels so much better, he's doing all the things he would have done? Parenting may have to change a bit. What we can let slip with a sick child, we may not be able to with a more active one.

I have 2 boys and I spent a good bit of time everyday wearing them out. You may have to find more physical activities for him now that he is becoming the kid he should be. Hopefully, once he gets used to his new energy, he will regulate it some.

As for the sniffles, has he been outside a lot? That's probably where that energy should go. . He may have a pollen allergy?

This could have something to do with it, too. Yesterday we were stuck inside because it was raining (darn Oregon weather) and I was trying to get some deep cleaning done. I wondered if somehow the dust could have made his allergies act up, too. Dust mites are his biggest allergen, but I was trying to be careful by using a wet cloth for gathering any dust. (actually he started the sniffles prior to my cleaning). I don't think he has any outdoor allergens. The doctor said they tested for indoor/outdoor, but who knows how many they did. We will definately have to hit the park. The sun is out today!

[frieze]

I wonder if this could be it? His regular fruit snacks have no artificial flavors or colors, these ones have Red 40, yellow 5, blue 1, and red 3. They also have artificial flavor

and pies, cereals, candies and snack foods, are FD&C Blue 1 and 2; FD&C Green 3, Orange B, FD&C Red 3, FD&C Red 40, FD&C Yellow 5 and 6.

this is the list i found, every one of the ones you mention is there....

[MitziG]

Food coloring makes my boy CRAZY hyper and gives him panic attacks. Red is the worst.

[Lfrost]

I had never noticed a change in my son's behavior because of artificial colors before! We are good so far today (his little hyper 'horns' have not appeared yet). This just amazes me! I was NEVER one to check food labels before my son started getting sick. I have always taken for granted that we are a 'naturally skinny' family (albeit a bit underweight). I always told people I must just have a high metabolism. I never thought I would be a 'food label checker' before.

I have been reading "Living Gluten-free for Dummies". I teach 3rd/4th grade and I have joked with a friend that this book should be a required read for all parents in my class! Heck, it should be handed out at hospitals to any pregnant mother! . I never knew the effects of what we put into our (and our children's) bodies--besides the usual food pyramid type stuff that is!

I am just amazed!

[1desperateladysaved]

The book The Feingold Diet for Hyperactive Children shaped my views. I watched a close aquaintance go on the diet and he had a drastic personality change. He went from hyper and tempermental to docile and humorous If he ate something artificial, we could figure out that he did so by his behavior.

Back in high school this had a profound effect on me. It began me on a thirty year quest in natural health care.

[Lfrost]

So while my son's behavior has improved today, we now have strange rashes.

Open Original Shared Link

Any ideas? I wonder if he might actually have celiac? His bloodwork was negative, but I haven"t pushed for a endoscopy since we thought the allergies were it. My main reason for worrying is the extremes of his reactions (to going gluten free--good, and developing rashes--bad). Keep in mind, his allergies by bloodtest came back LOW. His wheat allergy is only .49 (Low is .35-.70).

His milk, soy, egg white, peanut, and fish are all below .35 (clinical relevance undetermined).

I don't get it! I know I haven't deliberately fed him gluten and we try hard to avoid the other allergies. I wonder if there is cross contamination? My girls are not great about wiping up after they eat or make food. I just can't figure this out. His allergies are supposed to be low. His doctor wasn't even very concerned. Originally he said we didn't have to change his diet at all if we don't want to since the allergies are so mild. So even with cross contamination I wouldn't think there would be a reaction unless he ingested large amounts. Help!

[squirmingitch]

There could easily be cc from the girls. There could easily be cc from almost anywhere. And YES, it might just be celiac rash. And YES, it can come when gluten-free especially if there's cc. You see, after going gluten-free celiacs tend to have much more severe reactions when exposed to gluten, even trace amounts. I'm going to give you a couple links with photos of dh. I warn you that in the first link some of the photos are pretty severe. Look at the ones of the arms, legs & flanks; they appear more like you sons. Very cute BTW!

Open Original Shared Link

This second link is one we are working on right here on the board in the dh forum. It is new & not many photos yet.

https://www.celiac.com/forums/topic/94056-dh-photo-bank/

The hallmarks of the rash are intense itching, especially at night, often waking you up or keeping you up. Also, it often tends to present bilaterally but not always. Watch for it appearing on say one calf & then the other calf at the same time or within days of each other. One forearm & then the other. One side of the belly & also the other etc.....

And if he gets tiny, clear fluid filled blisters then you will have no doubt. But he may not have it that bad yet. Hopefully not!

[Lfrost]

Thank you squirmingitch. I really have no idea what this is! His rash does look similar to some of the second link. So far nothing has shown up on the other calf, but I will keep a look out. I do know that it itches like crazy (he won't leave it alone) and that it burns (he didn't want me to even touch it when I wanted to clean it up for a picture--that is why I couldn't wipe off the fresh blood smear on the leg picture). Also, the rash on his chin cleared up within 4 days of gluten free. I told my husband we just might need to cut everything processed (even homemade) out of his diet and go with just fresh fruit/veggies and meat, then slowly introduce things one at a time to see what is bothering him in case it is an allergic reaction. It is really crazy. I tell you, this boy is keeping me on my toes for sure!

[squirmingitch]

YVW. Oh, yeah, it burns too & stings. 12 -24 hrs. before it appears it will sting/burn like a fire ant bite but you look & there's absolutely nothing there.

Cutting processed food is a very good idea as salicylates can be a factor & processed foods are high in salicylates (sals).

[mikyraso]

Hi everyone :-> It has been a long time since I posted anything and I am VERY stumped. I need some MAJOR advice here. I DON'T KNOW WHAT TO DO. My 7 yr old daughter was diagnosed with celiac disease in Jan of 2011. The house has been gluten-free since her Dx. I was Dx in May 2011 with IBS. She has been doing really good. with the gluten-free change. There has been a couple of set backs but we have learned how to get through them. NOW I have come across something I don't know what to do. In June my youngest daughter developed "bumps" on the back of her neck along with a very itchy scalp ( no bumps just itching. Then I developed the same itchy scalp with bumps on back of neck down to my shoulder blades. I also have itching all over my arms and face. Then by the end of June my other daughter (she has confirmed celiac disease) also developed the same itching and a few bumps on the back of her neck. It is not Lice or Scabies and the pediatrician had not suggestions other than she wasn't sure what it was and we should see a dermatologist.

I did look at the photos of DH and what I have looks like some of the photo's. I went to a Dermatologist. She took a Biopsy of two spots. She also said that they see a lot of DH and it looks very similar. My question for everyone here what to do about my girls? Could we all develop DH around the same time? My husband doesn't have any of our symptoms so I don't believe it is am allergic reaction to anything. I just am so stumped. ANy advice would be GREATLY appreciated.

[squirmingitch]

Okay, first mikyraso, the biopsy the derm did on you will turn up negative --- well, let's say if it turns up positive then I will fall off my chair right here & now. The reason being is that the medical literature says that you MUST be actively consuming gluten EVEN for the dh biopsy PLUS even then there is a 30+% false neg, rate. And you have been gluten-free since May. However --- did the derm take the biopsies ON the spots or of a clear area ADJACENT to the spots? The biopsy MUST be taken from a clear area adjacent to the spots & not directly on the spots. Now, having said that --- your one daughter is already a confirmed celiac so there is no need to worry about a dx of dh for her as it would be a moot point. I know, I know, you're wondering if it IS dh so you can rule OUT the possibility of it being other things. Okay, it IS strange that all 3 of you got the rash in the same places at mol the same time. Question --- is your youngest daughter gluten-free or is she still eating gluten? Weird as it may be for all of you to get the rash in the same places at the same time --- I've heard stranger things in my life & you are all related sooooo..... A couple more questions ----

Have you changed shampoo or conditioner lately? Did you check to see that the newest bottles have the same ingredients as the last bottles? Did you mention this with your daughters & that 1 is dx celiac to the derm when you saw her?

Another thought. If your biopsy turns up neg. & your youngest is still eating gluten then you could get her rash biopsied.

As to you & the dx'd daughter getting the rash if it is dh being as you are both gluten-free ---- the antibodies which cause the rash take up to 2 years or more to get out of the skin & until they do then a flare of the rash can happen at any time. It can come & go during that time or it can come & make you miserable almost continually. Sorry --- have to be honest here --- hope none of you have to deal with a continual happening for that long but.......

Can you take photos of the rashes on all of you & post them on the dh forum? It would help a lot I think.

Now, it's also known that celiacs have skin problems/sensitivities. They have eczema, psoriasis, dermatitis & all kinds of stuff. I know, I'm not helping much by saying this.

[mikyraso]

Okay, first mikyraso, the biopsy the derm did on you will turn up negative --- well, let's say if it turns up positive then I will fall off my chair right here & now. The reason being is that the medical literature says that you MUST be actively consuming gluten EVEN for the dh biopsy PLUS even then there is a 30+% false neg, rate. And you have been gluten-free since May. However --- did the derm take the biopsies ON the spots or of a clear area ADJACENT to the spots? The biopsy MUST be taken from a clear area adjacent to the spots & not directly on the spots. Now, having said that --- your one daughter is already a confirmed celiac so there is no need to worry about a dx of dh for her as it would be a moot point. I know, I know, you're wondering if it IS dh so you can rule OUT the possibility of it being other things. Okay, it IS strange that all 3 of you got the rash in the same places at mol the same time. Question --- is your youngest daughter gluten-free or is she still eating gluten? Weird as it may be for all of you to get the rash in the same places at the same time --- I've heard stranger things in my life & you are all related sooooo..... A couple more questions ----

Have you changed shampoo or conditioner lately? Did you check to see that the newest bottles have the same ingredients as the last bottles? Did you mention this with your daughters & that 1 is dx celiac to the derm when you saw her?

Another thought. If your biopsy turns up neg. & your youngest is still eating gluten then you could get her rash biopsied.

As to you & the dx'd daughter getting the rash if it is dh being as you are both gluten-free ---- the antibodies which cause the rash take up to 2 years or more to get out of the skin & until they do then a flare of the rash can happen at any time. It can come & go during that time or it can come & make you miserable almost continually. Sorry --- have to be honest here --- hope none of you have to deal with a continual happening for that long but.......

Can you take photos of the rashes on all of you & post them on the dh forum? It would help a lot I think. Call me slow but are you saying you DO think it could be DH for my celiac disease daughter? Even if you are gluten-free can you devel. DH? We have been on vacation this summer and she might have had some CC but I don't know if she was since she didn't present any other symptoms other than the bumps.

Now, it's also known that celiacs have skin problems/sensitivities. They have eczema, psoriasis, dermatitis & all kinds of stuff. I know, I'm not helping much by saying this.

A BIG THANK YOU for responding so quick.I have had eczema (in my ears) for over 40 YEARS and have had NO relief. My celiac disease daughter had problems when we started solids but it seemed to subside after taking her off rice cereal.

My biopsy was taken on a spot AND a clear area. My youngest is not on a gluten-free diet. I haven't used anything new, in terms of shampoo's conditioner, or any type of soap. We haven't even tried a new food. I am a creature of habit and once I find a product the kids will eat then I don't change. Sad to say but I have not checked to see if any of our products formulas have changed . I use baby shampoo and soap on the girls and dove for myself and sometimes the girls.I have used the same products all along but I have read that companies do change their ingredient from time to time. I will do that TODAY. Thanks for the suggestion. I tried taking pictures but with my dig. camera they are too bright and you can't see the rash. I am going to try again when my H gets home.

[squirmingitch]

I think it's possible all 3 of you have dh but it's also possible all 3 of you have some kind of gluten related rash. Your having eczema for 40 years is telling as far as possible celiac for you goes.

Tell me, when your dd was dx'd did they do a genetic test on you & your hubs or your youngest dd? The dx'd dd HAS to have gotten the gene from either you or your hubs.

Is your youngest dd gluten LIGHT b/c of you & the dx'd dd? If she's not then there is a really good chance of getting her rash biopsied.

I'm trying to figure the best, fastest & easiest way for you to get the youngest dx'd if she has celiac also & then from there if both dd's were dx'd & you were the one who passed along the genes then it could be possible for you to end up with a dx if a doc or derm considers all the evidence as a whole. You see where I'm going with this?

And yes, dx'd dd can turn up with dh even though she is gluten-free. It would be more likely if she got cc'd. Well, there's another factor --- celiacs with dh tend to have less GI issues & even the ones they do have tend to be less severe in presentation AND there are "silent celiacs" who display no GI symptoms at all. interesting to note that quite a few dh'ers are silent celiacs. It's possible that you caught her celiac just before she had a dh outbreak & headed it off at the pass by going gluten-free but then every time she gets cc'd it makes antibodies build up in her skin & finally they break out in dh. It's a complicated subject & some of what I'm proposing is conjecture on my part but I'm trying to cover the possibilities. I state when I know something to be true but I say maybe or might when I'm just theorizing. I think you understand how I'm thinking anyway. I just don't want someone coming along & saying I SAID this or that --- you know?

Oh, & did you mention the history & dx'd dd to your derm when she did the biopsy?

Go ahead & see if you can get photos when hubs gets home & maybe try a bunch of different lightings.

[mikyraso]

I think it's possible all 3 of you have dh but it's also possible all 3 of you have some kind of gluten related rash. Your having eczema for 40 years is telling as far as possible celiac for you goes.

Tell me, when your dd was dx'd did they do a genetic test on you & your hubs or your youngest dd? The dx'd dd HAS to have gotten the gene from either you or your hubs.

Is your youngest dd gluten LIGHT b/c of you & the dx'd dd? If she's not then there is a really good chance of getting her rash biopsied.

I'm trying to figure the best, fastest & easiest way for you to get the youngest dx'd if she has celiac also & then from there if both dd's were dx'd & you were the one who passed along the genes then it could be possible for you to end up with a dx if a doc or derm considers all the evidence as a whole. You see where I'm going with this?

And yes, dx'd dd can turn up with dh even though she is gluten-free. It would be more likely if she got cc'd. Well, there's another factor --- celiacs with dh tend to have less GI issues & even the ones they do have tend to be less severe in presentation AND there are "silent celiacs" who display no GI symptoms at all. interesting to note that quite a few dh'ers are silent celiacs. It's possible that you caught her celiac just before she had a dh outbreak & headed it off at the pass by going gluten-free but then every time she gets cc'd it makes antibodies build up in her skin & finally they break out in dh. It's a complicated subject & some of what I'm proposing is conjecture on my part but I'm trying to cover the possibilities. I state when I know something to be true but I say maybe or might when I'm just theorizing. I think you understand how I'm thinking anyway. I just don't want someone coming along & saying I SAID this or that --- you know?

Oh, & did you mention the history & dx'd dd to your derm when she did the biopsy?

Go ahead & see if you can get photos when hubs gets home & maybe try a bunch of different lightings.

No they didn't do any Gen. testing on any of the fam. We have all had blood tests and they ALL were negative. The funny thing is that my dd who was Dx with celiac disease had a Endo BEFORE the blood work. The Endo was pos. and we were surprised to find the blood work was NEG.