Gluten Reaction 4 Hrs Later?

[sugarsue]

Hi everybody...I've been gone for a while since my kids have been diagnosed with PANDAS (autoimmune condition associated with Strep bacteria) and I've been researching and learning about that. But recently I've been getting back onto the Celiac path and have a couple of questions for you.

Both my girls have low normal IgA and elevated AGA IgG. Their new peditrician believes that since they are having a poor IgA immune response but a high AGA IgG immune response, that this does mean that they have Celiac. It doesn't really change anything for us, if it's true since we are gluten free and my younger dd is highly sensitive.

My older dd (8) has been having a really tough time recently and our doc thinks it may be from hidden gluten. Since she does not get the immediate diarrhea that my other dd gets, it's harder to tell and honestly I'm not as careful with her (before thinking it may really be Celiac).

Today we went to a restaurant where my dd8 had the ribs with the BBQ sauce that does have gluten in it. It took 4 hours but she became sick to her stomach like she was going to throw up, had gas pains but also was laughing like a crazy person, explosive emotions, falling down a lot and kept asking for more and more food. Since strep exposure causes her to act nutty I first thought she was exposed to strep but then I remembered I made the mistake with the BBQ sauce. Does all that sound like gluten exposure to you? Can it take 4 hours before symptoms appear?

Thanks!

Susan

[nu-to-no-glu]

Hi everybody...I've been gone for a while since my kids have been diagnosed with PANDAS (autoimmune condition associated with Strep bacteria) and I've been researching and learning about that. But recently I've been getting back onto the Celiac path and have a couple of questions for you.

Both my girls have low normal IgA and elevated AGA IgG. Their new peditrician believes that since they are having a poor IgA immune response but a high AGA IgG immune response, that this does mean that they have Celiac. It doesn't really change anything for us, if it's true since we are gluten free and my younger dd is highly sensitive.

My older dd (8) has been having a really tough time recently and our doc thinks it may be from hidden gluten. Since she does not get the immediate diarrhea that my other dd gets, it's harder to tell and honestly I'm not as careful with her (before thinking it may really be Celiac).

Today we went to a restaurant where my dd8 had the ribs with the BBQ sauce that does have gluten in it. It took 4 hours but she became sick to her stomach like she was going to throw up, had gas pains but also was laughing like a crazy person, explosive emotions, falling down a lot and kept asking for more and more food. Since strep exposure causes her to act nutty I first thought she was exposed to strep but then I remembered I made the mistake with the BBQ sauce. Does all that sound like gluten exposure to you? Can it take 4 hours before symptoms appear?

Thanks!

Susan

[/quote

I know for me, personally, it varies day to day (I'm definitely not an expert as I'm just researching like you, but have high suspisions of celiac for myself and son). Anyway, my reaction can be instantaneous one day, several hours the next, or sometimes even a day later. If you dig around here and look at others symptoms, you'll see that everyone reacts differently and within different time frames. Also, you'll se many siblings who have celiac, so if one daughter is responding well to gluten-free, there's a good chance your other little one could as well...and both have unique sets of symptoms. Hope others can shed some light for you as well.

[ang1e0251]

You mentioned she wanted to eat and eat. That's one of my main symptoms when glutened, insatiable hunger. I can't stop eating even when my stomach feels full.

[Roda]

Hi everybody...I've been gone for a while since my kids have been diagnosed with PANDAS (autoimmune condition associated with Strep bacteria) and I've been researching and learning about that. But recently I've been getting back onto the Celiac path and have a couple of questions for you.

Susan

I know this is a little sidetracked but I read this that you were researching PANDAS and it caught my attention. I did a little reading on it and I think I may be on to something with my oldest son. What are your kids behavior like when they have strep or after they are exposed? My oldest son was plagued with one strep infection after another from age 3-4 with tonsils removed at 4. Then he started with strep sinus infections. We are again having problems (he is 8) and he has already had three infections this year and I am again suspecting another. The weird thing is I always would tell the ped that I knew when he had strep by way of his behavior. There is a pattern to it. One minute he is happy, loving and compliant and the next thing you know he is going off the deep end over something insignificant. His behavior lately has been a lack of focus in school and defiant behavior towards me because he does not want to do his homework. He wants to do his thing when he wants to and does not want me telling him what to do. His last outburt was a complete melt down with yelling, crying, kicking/throwing toys which sent him to his room. He then ended up hitting/kicking the door/walls and throwing objects. Afterwords he came to me crying and was genuinely sorry and does not know why he gets like this. He has had various form of these "hissy fits" since three years old. This behavior is how I always knew he had strep so I would take him and low and behold he was usually allways positive. I can't believe noone has seen this connection. He does not have any tics or ocd type behavoir that is associated with it just the mood swings. I have also toyed with the notion of putting him on a gluten free diet since he has allergies and asthma. He is also a little small for his age (not too bad) and had chronic constipation issues till three. He had a total Iga and a ttg done last Nov. He is not Iga deficient and the ttg was normal. However, they did not do the whole pannel so I am going to take him back and request it. I hope it's not too much to ask but what are you doing for the PANDAS and are they gluten free because of celiac/gluten sensitivity or for the behavioral issues or both? I wonder if there is a connection. Thanks for any info.

[sugarsue]

I wonder if there is a connection. Thanks for any info.

Hi, thanks for reaching out. Not many people know about PANDAS, doctor's included so it can be difficult. I had never heard of it until March of this year and my girls have had it since age 1! Check out this forum, it's the best as far as experienced PANDAS parents. You can read through the posts to see if the symptoms speak to you. You can also find out if there is a doctor in your area who is familiar with PANDAS from this website or by posting a question to the parents.

Open Original Shared Link

My first post there said that I was sure this was not us and when they heard our symptoms, they said, Uh, yes! Symptomatic symptoms to strep do scream PANDAS to me so your story sounds like it is a possibility. My girls do not have tics or tourettes but they do show OCD behavior which I did not recognize until I started reading up on it. The behavior you describe, associated with strep infections, getting better, getting worse is something we all see over and over. If it is PANDAS, you are lucky in the way that many of these kids are really, really sick.

Here's one other really good website

Open Original Shared Link

I have also found that there is a connection between gluten/Celiac and PANDAS somehow although they don't really know yet but I'm seeing a lot of the kids with PANDAS and Celiac or at the very least do well on a gluten free diet.

I hope this is helpful and good luck!

Susan

Oh, PS... the iniital treatment is daily antibiotics until the strep is gone (6 weeks at least) and then a weekly dose to try to keep the strep away.

[sugarsue]

You mentioned she wanted to eat and eat. That's one of my main symptoms when glutened, insatiable hunger. I can't stop eating even when my stomach feels full.

Oooh, interesting, I put that on there just to name them all but I will pay attention to see if I notice it again.

Thanks.

[sugarsue]

I know for me, personally, it varies day to day (I'm definitely not an expert as I'm just researching like you, but have high suspisions of celiac for myself and son). Anyway, my reaction can be instantaneous one day, several hours the next, or sometimes even a day later. If you dig around here and look at others symptoms, you'll see that everyone reacts differently and within different time frames. Also, you'll se many siblings who have celiac, so if one daughter is responding well to gluten-free, there's a good chance your other little one could as well...and both have unique sets of symptoms. Hope others can shed some light for you as well.

Thanks, she has been gluten free since December and she really improved a lot. I never put her existing symptoms in with gluten though and now it really is seeming like it's related. Thanks a lot!

[Roda]

Hi, thanks for reaching out. Not many people know about PANDAS, doctor's included so it can be difficult. I had never heard of it until March of this year and my girls have had it since age 1! Check out this forum, it's the best as far as experienced PANDAS parents. You can read through the posts to see if the symptoms speak to you. You can also find out if there is a doctor in your area who is familiar with PANDAS from this website or by posting a question to the parents.

Open Original Shared Link

My first post there said that I was sure this was not us and when they heard our symptoms, they said, Uh, yes! Symptomatic symptoms to strep do scream PANDAS to me so your story sounds like it is a possibility. My girls do not have tics or tourettes but they do show OCD behavior which I did not recognize until I started reading up on it. The behavior you describe, associated with strep infections, getting better, getting worse is something we all see over and over. If it is PANDAS, you are lucky in the way that many of these kids are really, really sick.

Here's one other really good website

Open Original Shared Link

I have also found that there is a connection between gluten/Celiac and PANDAS somehow although they don't really know yet but I'm seeing a lot of the kids with PANDAS and Celiac or at the very least do well on a gluten free diet.

I hope this is helpful and good luck!

Susan

Oh, PS... the iniital treatment is daily antibiotics until the strep is gone (6 weeks at least) and then a weekly dose to try to keep the strep away.

Thanks for the links. Can you maybe post the first link again? I cant get it to work. Thanks!

[sugarsue]

Thanks for the links. Can you maybe post the first link again? I cant get it to work. Thanks!

Try this... Open Original Shared Link

I logged out, maybe since I was still logged in it didn't like that link. I find it interesting that you have hashimoto's. I do too.

Susan

[Roda]

In mid July was when my son had a complete meltdown over trying to write a cursive letter and thats when I knew he had strep/sinus infection. I took him and he did and they put him on a 10 day antibiotic. Within about 5 days he was back to his old self. Not even two weeks after finishing the antibotic his mood swings were back. I just figured it was his allergies and I have been letting it ride its course. He is coughing pretty good now so I know his sinusus are acting up. He is allergic to dust mites, cockroaches, and a whole slew of fall weeds ie ragweed, mugwort, hemp, lambs quarter, russian thistle etc. I think I am going to put a call in to his allergest/immunologist for a sick visit and ask about the PANDAS and get him the whole celiac panel again. I was able to log in after a bit. I found some of the info interesting with a lot of the kids having allergies/sinus problems/asthma and a family history of autoimmune issuse, allergies and rhumatic/scarlet fever. Well it's stacked against him. I have two autoimmune diseases and had scarlet fever twice as a child, my brother has an autoimmune disease (sarcoidosis), grandparents hx of asthma/allergies, and paternal aunt/granfather/greatgrandmother with psyciatric issues (bipolar). So I don't think I'm crazy to at least entertain a link. Thanks!

[sugarsue]

In mid July was when my son had a complete meltdown over trying to write a cursive letter and thats when I knew he had strep/sinus infection. I took him and he did and they put him on a 10 day antibiotic. Within about 5 days he was back to his old self. Not even two weeks after finishing the antibotic his mood swings were back. I just figured it was his allergies and I have been letting it ride its course. He is coughing pretty good now so I know his sinusus are acting up. He is allergic to dust mites, cockroaches, and a whole slew of fall weeds ie ragweed, mugwort, hemp, lambs quarter, russian thistle etc. I think I am going to put a call in to his allergest/immunologist for a sick visit and ask about the PANDAS and get him the whole celiac panel again. I was able to log in after a bit. I found some of the info interesting with a lot of the kids having allergies/sinus problems/asthma and a family history of autoimmune issuse, allergies and rhumatic/scarlet fever. Well it's stacked against him. I have two autoimmune diseases and had scarlet fever twice as a child, my brother has an autoimmune disease (sarcoidosis), grandparents hx of asthma/allergies, and paternal aunt/granfather/greatgrandmother with psyciatric issues (bipolar). So I don't think I'm crazy to at least entertain a link. Thanks!

Oh yeah, the deteroriation of hand writing is a very clear sign. He sounds very much like my girls. I think you are on the right track. Don't get discouraged if your doc's don't agree. Keep on looking for a good doc who will really look into this. The long term antibiotics is what will help protect him!

Susan

[OptimisticMom42]

I'm not sure how to do this without sounding harsh so let me just put this out there. I didn't recognise my son's illness. He would be volatile then incredibly remorseful. He had a hissy fit and intentionally crashed into an empty parked car while taking steroids and antibiotics for strep. But instead of being 8 yrs old like your son, he was 17. He was sent to prison last Wednesday. He will be there for 2 1/2 to 10 years. I'm thankful that nobody was physically harmed and that we now know he has celiacs not bipolar disorder or worse but my heart is broken just the same.

Please take you child's behaviour and reactions as seriously as you possibly can.