Er Visit For Our Little One After Being Glutened

Nehring · May 27, 2013

This is my very first time posting. My husband and I have been keeping our son on a gluten free diet for about 6 months. A year ago he had an mri with sedation, so they did a celiac panel at that time. It came back negative, but his constipation was crippling his potty training and making him terrified to have a BM. I could just tell that something wasn't right about the way his body was working. We had tried a gluten free diet for a short time before to help with autism, but then returned to a normal diet. After the constipation came back with a vengance, we got him back on the diet and have seen major improvements.

Our Family Practitioner refered us to a pediatric GI Specialist, and discussed the possibility of him undergoing an intestinal biopsy. The GI specialist ordered a huge list of blood tests and did not find any wheat allergies, nor casien, but he did say the test picked up a possible soybean and peanut allergy, which is strange because he ate peanut butter every day. He advised us to continue with the gluten free diet, and that he obviously has a sensitivity to gluten. At this time it was a month before our wedding, and we asked him if he could possibly cheat for just one day, to have a piece of wedding cake with us. He said that it should be fine, that some symptoms might come back but it wouldnt be harmful to his body.

After pricking both of his arms to get two huge vials of blood we treated him to a chicken nugget happy meal. Later that night he got an insanely itchy rash that spread from the backs of his knees throoughout his whole body. He was miserable. We gave him some benedryl and it seemed to work immediately.

Cut to our rehearsal dinner last friday...after staying late at the venue in unsesonably cold weather, we arrived at the restaraunt (and amazing bakery) starving. We let our little guy have some saltines, mozerella sticks, french fries (probably fried in the same oil as gluten products) grilled chicken and he ate the frosting off of a cupcake. That night I got him to take a little benedryl, he slept well but woke up at 4:30 in the morning. He played and ate some bananas and juice. my brother took him to my in laws so I could get ready for our wedding, and about an hour later, my mom in law called saying he had thrown up all over her and had started to have bad diarrhea. He continued to throw up and have diarrhea all through the wedding. It was too much for such a short period of time. Then he started to get listless and lethargic. He wouldn't open his eyes, and was pale, with no color in his lips or cheeks. We have several nurses in the family so we decided to take him to the emergency room. I slipped out of my dress and we drove an hour away to the hospital closest to our home. He slept the entire way, but had barely woken up when we got there. They ordered an IV, but he was able to start drinking normally and drank about 20 oz of juice. His blood tests checked out, and he was able to take some zofran. He threw up one more time that day, had terrible gas and had diarrhea for a little longer.

The er doctor told us that he reacted to the gluten, since he has had reactions before. It scared us so badly we are terrified of giving him an opportunity to cheat ever again. He had gotten sick from accidental gluten before, but never to this degree. My questions are....

-Isn't this a serious reaction to gluten for just a sensitivity?

-do we need to do further testing for celiac disease?

-There is no way Im giving him gluten to prep him for the intestinal biopsy...What else can we try?

-Should we see another GI Specialist?

-Please share any advice!!!

frieze · May 27, 2013

What more evidence do you need?

pricklypear1971 · May 27, 2013

Yes, this can happen from gluten. Reactions can (and do) worsen the longer a person is gluten-free. There is NO WAY to predict how a person will react, and it is not unusual for reactions to turn to hideous without warning.

Celiac testing us notoriously unreliable in children - they say its because they haven't had enough time to build up antibodies. So, that may be why tests were negative.

So, now you know he can't cheat. Now you know he can't consume gluten for testing. Now you know to be vigilant to prevent cross contamination. Now you know.

Do NOT assume, as many do, that a dx of NCGS is a "lesser" evil. There are people with even worse reactions than your son, people with crippling neurological symptoms - who are technically NCGS. The truth is that no one knows what NCGS is or does. They don't know what small exposures do to the body, outside of the reaction that follows.

Do what you think is best regarding the doctor. See what happens when you refuse further testing. If Doc refuses to treat him without it, you know he's worthless. If Doc refuses to acknowledge the need for autoimmune monitoring - worthless. You get my point.

Congratulations in your wedding. Sounds like y'all had a wild day, and I'm glad your little guy is doing better.

Nehring · May 27, 2013

Yes, this can happen from gluten. Reactions can (and do) worsen the longer a person is gluten-free. There is NO WAY to predict how a person will react, and it is not unusual for reactions to turn to hideous without warning.
Celiac testing us notoriously unreliable in children - they say its because they haven't had enough time to build up antibodies. So, that may be why tests were negative.
So, now you know he can't cheat. Now you know he can't consume gluten for testing. Now you know to be vigilant to prevent cross contamination. Now you know.
Do NOT assume, as many do, that a dx of NCGS is a "lesser" evil. There are people with even worse reactions than your son, people with crippling neurological symptoms - who are technically NCGS. The truth is that no one knows what NCGS is or does. They don't know what small exposures do to the body, outside of the reaction that follows.
Do what you think is best regarding the doctor. See what happens when you refuse further testing. If Doc refuses to treat him without it, you know he's worthless. If Doc refuses to acknowledge the need for autoimmune monitoring - worthless. You get my point.
Congratulations in your wedding. Sounds like y'all had a wild day, and I'm glad your little guy is doing better.

We knew almost immediately that it was a reaction to what he ate. We were just suprised and terrified that it was so strong. We usually are extreemly strict with his diet, but the GI made it seem like the gluten free diet was more of a prefrence than a medical need. I absolutely hear you. Now we know how serious it really is. He actually does have nuerological symptoms. He has high functioning autism, which is what lead me to investigate Gluten-free Casein-free diets in the first place. The first time we tried it we noticed a change in his digestional issues, but no signifigant with autism, so we felt it wasn't worth it. It was maybe 6 months later that we were desperate for a change in his constipation. Going gluten-free helped immediately. He has improved at school, and has generally felt better, so that helps with his autistic symptoms.

Do you know anything about a genetic blood test that we could use? Can you further explain to me what autoimmune monitering is? I have to wait until after the holiday to speak to my Doctor so I'm a little desperate for insight.

pricklypear1971 · May 27, 2013

We knew almost immediately that it was a reaction to what he ate. We were just suprised and terrified that it was so strong. We usually are extreemly strict with his diet, but the GI made it seem like the gluten free diet was more of a prefrence than a medical need. I absolutely hear you. Now we know how serious it really is. He actually does have nuerological symptoms. He has high functioning autism, which is what lead me to investigate Gluten-free Casein-free diets in the first place. The first time we tried it we noticed a change in his digestional issues, but no signifigant with autism, so we felt it wasn't worth it. It was maybe 6 months later that we were desperate for a change in his constipation. Going gluten-free helped immediately. He has improved at school, and has generally felt better, so that helps with his autistic symptoms.
Do you know anything about a genetic blood test that we could use? Can you further explain to me what autoimmune monitering is? I have to wait until after the holiday to speak to my Doctor so I'm a little desperate for insight.

A genetic test can show you if he has the most commonly known genes linked to celiac. It doesn't prove or disprove he has celiac disease - only that he's genetically predisposed. Some doctors use it to exclude celiac if the most common genes aren't found; however, there are dxed Celiacs with the "wrong" genes - so genes aren't all there is to it. If you do gene testing, make sure the lab is one that reports ALL genes - not just says "yes/no" or reports only which Celiac genes are found, or just the alpha/beta sections where celiac genes are found (basically half the genes). LabOne reports all genes.

Since you know he has a reaction to gluten, and his testing was inconclusive - you don't know if his reaction is autoimmune or not. He needs to be closely monitored for other AI diseases like diabetes, thyroid, arthritis, etc. If he starts to develop any other disease the pendulum will start to shift more to Celiac than NCGS.

Gene testing may show other AI genes. I carry strong autoimmune disease genes - but I have two half celiac genes - they call me low risk for celiac but here I am....I do also have Hashimotos Thyroiditis, another AI disease.

wmramsel · May 28, 2013

We actually just tried a gluten trial with my daughter after being gluten free for 6 months. We also ended up in the ER. Within 15minutes of ingesting 2 slices of bread she had: 102* fever; 2 different kinds of spreading rash that was painful, blistering, and itchy; projectile vomiting; and irritability. The next morning she had a 3rd kind of rash that had developed, still had a fever, and her mood swings were INSANE! It took her over a week to completely rid of the fever, and her moods are still evening out over 10 days later. We are now dealing with the rashes again after being accidently glutened after sitting in the same high chair that her brother was in eating cheerios.

We now have appointments with an allergist and a pediatric GI because we don't know if it is Celiac or an allergy. This thread has been helpful to me as well!

Nehring · May 28, 2013

I'm so glad this thread was helpful to somebody. Does anyone have any advice about helping him recover from this type of gluten reaction? I've been thinking of going back to the first stage of the simple carbohydrate diet, which follows a strict protocol for a few weeks. If I remember correctly its eggs, broth and bananas only for the first few days, with increasing food options once they begin to tolerate it. The website is pecanbread.com if anyone is interested.

GFinDC · May 28, 2013

Hi Nehring,

Welcome to the forum! I never did the SCD myself, it has a lot of diary in it so it didn't work for me. It should be safe to stick to basic foods though, like meat, nuts, fruit and veggies. Notice I left dairy out of that list. Dairy is known to cause constipation for many people. Also it can cause intestinal bleeding in people with casein sensitivity. Instead of dairy use things like almond milk or rice milk. Avoid soy milk as it is not good for many reasons. Avoiding gluten means not eating anything with wheat, rye or barley in it. About 10% of us react to oats also, and most oats are cross contaminated with gluten grains anyway. So oats should be avoided as well, for at least 6 months to a year. If they are challenged at that point they may be ok. A challenge should be eating the test food each day for a week and noting any changes, good or bad. The diet you would be following with him is the GFCFSF diet, gluten free, casein free and soy free.

Don't expect instant improvement in all areas from a diet change. Nuerological improvements take time as nerve cells grow and heal more slowly. When I went gluten-free, my gut pain took about 9 months to go away. Nuero issues can take more like18 months to improve.

It is important to get a good gut bacteria established in children. He should be taking a quality pro-biotic . Jarro makes some but there are others. Culturelle is well thought of.

People can have food intolerances (IgA, IgG) to any food. Some of us react to quite a few more foods than just gluten. And food intolerances don't show up in allergy testing (IgE). But a person can have both food intolerances and allergies at the same time. Fun stuff!

Watch out with nuts as they do sometimes have gluten added during processing. So always read labels. Kraft (Planters) has committed to always labeling for gluten in their products. That doesn't mean they don't put in gluten in some products, but they do label it. Labeling in the USA is voluntary at this point.

Nehring · May 28, 2013

Hi Nehring,

Welcome to the forum! I never did the SCD myself, it has a lot of diary in it so it didn't work for me. It should be safe to stick to basic foods though, like meat, nuts, fruit and veggies. Notice I left dairy out of that list. Dairy is known to cause constipation for many people. Also it can cause intestinal bleeding in people with casein sensitivity. Instead of dairy use things like almond milk or rice milk. Avoid soy milk as it is not good for many reasons. Avoiding gluten means not eating anything with wheat, rye or barley in it. About 10% of us react to oats also, and most oats are cross contaminated with gluten grains anyway. So oats should be avoided as well, for at least 6 months to a year. If they are challenged at that point they may be ok. A challenge should be eating the test food each day for a week and noting any changes, good or bad. The diet you would be following with him is the GFCFSF diet, gluten free, casein free and soy free.

Don't expect instant improvement in all areas from a diet change. Nuerological improvements take time as nerve cells grow and heal more slowly. When I went gluten-free, my gut pain took about 9 months to go away. Nuero issues can take more like18 months to improve.

It is important to get a good gut bacteria established in children. He should be taking a quality pro-biotic . Jarro makes some but there are others. Culturelle is well thought of.

People can have food intolerances (IgA, IgG) to any food. Some of us react to quite a few more foods than just gluten. And food intolerances don't show up in allergy testing (IgE). But a person can have both food intolerances and allergies at the same time. Fun stuff!

Watch out with nuts as they do sometimes have gluten added during processing. So always read labels. Kraft (Planters) has committed to always labeling for gluten in their products. That doesn't mean they don't put in gluten in some products, but they do label it. Labeling in the USA is voluntary at this point.

He loves almond milk, and we don't really give him any cheese. Maybe ice cream once in a while since it doesn't seen to bother him. We also give him kefir and culturelle to help with the probiotic issue. The first time we went gluten free with him we tried SCD. It was REALLy in depth and there were even more restrictions than with Gluten-free Casein-free. I remember getting a juicer and making fresh juices to help with vitamin absorbtion. I knew soy milk was not an option, and then was surprised when we found the soy allergy. If we would have known this type of reation would happen we never would have tried cheating. We expected maybe a rash or some irritability. It was his first ER visit and we were shocked. That's why I am not sure what else we can find out. I'm wondering if we should just settle at a gluten sensitivity dx and treat it as celiac or should we push to absolutley rule out celiac?

pricklypear1971 · May 28, 2013

He loves almond milk, and we don't really give him any cheese. Maybe ice cream once in a while since it doesn't seen to bother him. We also give him kefir and culturelle to help with the probiotic issue. The first time we went gluten free with him we tried SCD. It was REALLy in depth and there were even more restrictions than with Gluten-free Casein-free. I remember getting a juicer and making fresh juices to help with vitamin absorbtion. I knew soy milk was not an option, and then was surprised when we found the soy allergy. If we would have known this type of reation would happen we never would have tried cheating. We expected maybe a rash or some irritability. It was his first ER visit and we were shocked. That's why I am not sure what else we can find out. I'm wondering if we should just settle at a gluten sensitivity dx and treat it as celiac or should we push to absolutley rule out celiac?

I don't know how else to say this...so here goes.

You want black and white - and you are in a grey area. You will always be in a grey area unless they come up with new testing methods for Celiac Disease that don't require the subject to eat gluten for a long period (or at all).

Stop worrying about if it is Celiac, and concentrate on developing a safe menu of foods that he doesn't react to. Obviously gluten-free and sf, and it sounds like cf?

You must stop waiting for a doctor to tell you what "is and isn't"...obviously they don't "know it all" because one already gave you some bad advice, right?

Just move forward with what you do know, and adapt as needed. Sometimes that's all we can do.

Nehring · May 28, 2013

I don't know how else to say this...so here goes.
You want black and white - and you are in a grey area. You will always be in a grey area unless they come up with new testing methods for Celiac Disease that don't require the subject to eat gluten for a long period (or at all).
Stop worrying about if it is Celiac, and concentrate on developing a safe menu of foods that he doesn't react to. Obviously gluten-free and sf, and it sounds like cf?
You must stop waiting for a doctor to tell you what "is and isn't"...obviously they don't "know it all" because one already gave you some bad advice, right?
Just move forward with what you do know, and adapt as needed. Sometimes that's all we can do.

You're right. I guess it's just a quest for answers when your child is sick, but you just have to take what you know and go with it. I might never find all the answers but I can try to do what is best for him in the meantime.

pricklypear1971 · May 28, 2013

You're right. I guess it's just a quest for answers when your child is sick, but you just have to take what you know and go with it. I might never find all the answers but I can try to do what is best for him in the meantime.

I know exactly how you feel. My son has been through testing - came up negative...and yet there are signs pointing that direction.

My husband and I have to make a decision...and it is difficult. Very difficult.

GFinDC · May 28, 2013

He loves almond milk, and we don't really give him any cheese. Maybe ice cream once in a while since it doesn't seen to bother him. We also give him kefir and culturelle to help with the probiotic issue. The first time we went gluten free with him we tried SCD. It was REALLy in depth and there were even more restrictions than with Gluten-free Casein-free. I remember getting a juicer and making fresh juices to help with vitamin absorbtion. I knew soy milk was not an option, and then was surprised when we found the soy allergy. If we would have known this type of reation would happen we never would have tried cheating. We expected maybe a rash or some irritability. It was his first ER visit and we were shocked. That's why I am not sure what else we can find out. I'm wondering if we should just settle at a gluten sensitivity dx and treat it as celiac or should we push to absolutley rule out celiac?

Hi Nehring,

The typical thinking people seem to have is that gluten sensitivity is not as dangerous as celiac disease. We don't really know that is true. Until last year the medical community didn't consider it real. Then some researchers did a study that proved it exists and causes real symptoms. In some people, symptoms just like celiac disease causes. There are no long term studies of the consequences to the health of a person with non-celiac gluten sensitivity (NCGS or NCGI) who continues to eat gluten. There are also no standard tests to detect NCGI. The study did find that it seems to be an innate immune system response vs and active immune system response. Some people think Crohn's disease is an innate immune system response also. So, that could mean it is not something to take lightly. Since nobody really knows, it is a crap shoot with a person's health at this point. Either way, celiac disease or NCGI, the safe route is to avoid all gluten. Maybe in 20 years they will have answer about NCGI, but right now they (doctors) don't know it's ramifications. If they tell you it is no problem, ask them to show studies proving that. They won't be able to.

Has the doctor suggested an EPI pen for his reactions? If he has allergies, they sometimes can get suddenly worse and require quick action. An EPI pen is the usual way to deal with those reactions. I am wondering about allergies since he responded to Benedryl. There is a website called allergy and anaphylaxis network or some such that has good info.

These 2 articles talk about the recent study results.

Non-celiac wheat sensitivity article

https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases

https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

There is a coconut ice cream called "So Delicious". I think they make coconut yogurt too.

And since we have lots of lonely threads that need reading...

Helpful or interesting threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/