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A New Food “Allergy” of Infancy: Food Protein Induced Enterocolitis Syndrome (FPIES)

My oldest daughter, Grace, had horribly bad reactions to cow’s milk protein as an infant, which included vomiting, chronic diarrhea with mucus, irritability, reflux, and poor growth. Her first reaction occurred shortly after getting her initial supplemental bottle of formula. She was predominantly breastfed at first, but I did have to supplement her due to milk supply issues (which, looking back, I believe were a result of my undiagnosed Celiac Disease). She went through a series of formula changes (from regular to soy to Alimentum and Nutramigen), and it was not until she was started on Neocate, an amino acid based formula, at 2 months, that she began to grow and thrive. Looking back, I am pretty sure that she had food protein induced enterocolitis syndrome, which is also called FPIES.

FPIES is a severe food sensitivity/intolerance which causes digestive symptoms in infants. Although it is considered by many to be an “allergy,’” it does not involve the formation of IgE antibodies like other food allergies. The most common triggers for FPIES in babies are cow’s milk and soy proteins, although rice, oats, barley, fruits, and vegetables have also been documented as triggers for older infants who have been started on solid foods. Based on recent studies it is believed that 0.3% of infants have an FPIES reaction to cow’s milk. This is in addition to the 3-5% of infants who have milder non-IgE reactions (allergies) to cow’s milk protein during the first year of life.

Infants with FPIES have symptoms shortly after consuming cow’s milk and/or soy proteins, usually within 1-4 hours. The usual trigger is a cow’s milk based formula, but breast fed infants can react to milk proteins in their mother’s breast milk as well. Symptoms can include projectile vomiting, chronic diarrhea with blood and/or mucus, low blood pressure, lethargy, irritability, and/or an elevated white blood cell count. 50% of infants with FPIES who react to milk will also react to soy.

It has recently been recognized that older infants can develop FPIES after solid foods are introduced during the 2nd six months of life. Rice is the most common trigger, followed by oats, barley, chicken, turkey, egg whites, green peas, peanuts, and potatoes. I recently learned that 80% of infants with one solid food trigger will have reactions to at least one other food, and that it is common for infants to have FPIES reactions to multiple foods.

Diagnosing FPIES is difficult because there are currently no blood tests that can be used in detection. This is because the immune reaction of FPIES does not involve the formation of IgE antibodies against the offending foods. This is much different than the IgE-mediated immune reaction that occurs in older children with food allergies. IgE allergies can be detected by blood and/or skin testing.  If a baby has adverse reactions after multiple exposures to the same food, FPIES can be diagnosed clinically. If the diagnosis is unclear, an oral food challenge (OFC) should be performed. It is recommended that an OFC be performed under close medical supervision (i.e. doctor’s office), as there is a risk for low blood pressure and/or dehydration to develop during a food challenge. In the worst cases an infant can develop shock. In some cases infants may need IV fluids after a reaction. Steroids are sometimes needed in severe cases. Based on what I have read, it seems that reactions to trigger foods may get more severe with time, i.e. it may take less and less of the offending food to trigger a reaction.

Research has shown that FPIES to milk and/or soy protein resolves by 3 years of age. It is recommended that children with FPIES get oral food challenges every 12 to 24 months. My oldest daughter is now 7 years old and she has no problems with dairy products (she eats yogurt, cheese, and ice cream) but she has refused to drink plain cow’s milk and has a tendency to avoid soy as well.

Reading and learning about FPIES led me to have many questions and concerns:

1. Why are so many infants born with this problem and why is it increasing in severity? Is it somehow related to their moms having undiagnosed Celiac Disease, and/or some other process causing “leaky gut” while pregnant?

2.  Is this the same disease process which those of us who have multiple food intolerances are experiencing, only babies are getting sicker and having more severe reactions since their immune and digestive systems are less mature?

3. How under-diagnosed is this problem? I had never heard of it 7 years ago when my daughter had it (and I was in my pediatric residency at the time). What are the real numbers?

4. Do infants with FPIES go on to develop Celiac Disease or gluten sensitivity when they are older? Is FPIES, even though it resolves, some sort of marker for the future development of food issues in a patient?

5. Is this somehow linked to the dramatic increase in autism over the last few years? Do the FPIES episodes have some sort of effect on the developing brain of an infant?

6. Does the microflora of the gut play a role? Would probiotics prevent and/or ameliorate the problem?

7. I was going to speculate a bit about GMOs, but I am not sure that I am ready to write about that yet…

I suspect that we are going to hear a lot more about this problem in the future. I wrote this article to share the little which I know about FPIES with you, in hopes that we can learn about it together.

References:

1. American Academy of Allergy, Asthma, and Immunology website: www.acaai.org/allergist/allergies/Types/food-allergies/Pages/food-protein-induced-enterocolitis-syndrome-fpies.aspx

2. Medscape Pediatrics. “FPIES: The ‘Other” Food Allergy.” Dr. Anna Nowak-Wegrzyn, MD. Published online April 3, 2013.

3. Curr Opin Pediatr. 2012 Dec;24(6):739-45. Clinical diagnosis and management of food protein-induced enterocolitis syndrome. Leonard, S. and Nowak-Wegrzyn, A. www.ncbi.nlm.nih.gov/pubmed/23042254

4. Clin Exp Allergy. 2012 Aug;42(8):1257-65. A multicentre retrospective study of 66 Italian children with food protein-induced enterocolitis syndrome: different management for different phenotypes. Sopo, S., et al. Department of Pediatrics, University of Sacred Heart Agostino Gemelli Rome, Rome, Italy. www.ncbi.nlm.nih.gov/pubmed/22805473

 

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23 thoughts on “A New Food “Allergy” of Infancy: Food Protein Induced Enterocolitis Syndrome (FPIES)

  1. jennifer

    Thank-you for your article and for spreading the word about FPIES. My 3 year old son was diagnosed with MSPI and GERD at 3 weeks old, and only after seeing multiple specialists in pediatric GI and Allergy was he diagnosed with FPIES a few months ago. He lives solely on neocate splash, and we are struggling to find safe foods he can eat. Besides milk and soy, rice, carrots and sweet potatoes were his most severe reactions. His reactions are less severe now, but still obvious. He has been on probiotics most of his life and we only trial non-GMO/organic foods. Hoping that more research can be done on this syndrome that affects us daily.

    1. Jess Post author

      Hi Jennifer,
      Thank you for sharing your story. After learning more about this diagnosis I can’t help but wonder how many little ones must be out there who have yet to be diagnosed. Have the probiotics seemed to make a difference at all? Do you have resources which you would recommend for other parents whose babies and toddlers have FPIES? Thank you! Jess

  2. Kate

    I am in the process of getting a Celiac diagnosis now. (Fairly certain I have it. I self diagnosed 3 years ago and stopped eating gluten. I’m at the end of an 8 week gluten challenge now to be officially tested and I have many real symptoms back again–won’t get into the details!) Anyway…my son had this issue with dairy, even when he was exclusively breastfed in the beginning. Interesting to think there may be a connection. Thanks for this piece and taking the time to write this blog!

    1. Jess Post author

      Hi Kate,
      I can’t imagine having to do a gluten challenge at this point, you are very brave and I hope that you don’t feel too atrocious.
      That is fascinating that your son had this issue when he was exclusively breastfed. From the reading that I did it does happen though (and you and your son are proof!) After my daughter’s initial issues with milk protein after her 1st supplemental formula feed, she did start to react to dairy in my breast milk as well. It took a while to figure out what was going on. I did remove all dairy from my diet to the best of my ability, and she tolerated my milk much better than any of the formulas (with the exception of Neocate) but I think that a little milk protein did slip into my milk from time to time. How old is your son now? Have you re-introduced dairy to him?
      Jess

  3. Amy

    Thank you so much for your post and your insightful questions — many of the same questions have kept me up at night. I am the mother of two boys with FPIES, ages 3 year and 11 months. My older boy is nowhere near outgrowing FPIES, but like Jennifer’s son, his reactions have transitioned from acute to more chronic. He recently developed fructose malabsorption so we have a new set of foods to avoid! But I will say that my younger son is thriving after an early diagnosis. He has yet to have a classic FPIES episode, but he has many food sensitivites through breastmilk. It’s amazing how FPIES becomes a part of daily life. We are thankful for a supportive FPIES community and the work/resources of IAFFPE — both are lights in the dark!

    1. Jess Post author

      Hi Amy,
      Thank you so much for sharing your experience with FPIES and the resources of the IAFFPE. I just learned that they are going to be distributing information about FPIES to all pediatrician who are part of the AAP which is going to be a huge step toward increasing awareness in the medical community.
      I posed the question, “Is there a link between cow’s milk protein intolerance in infants and maternal celiac disease?” on celiac.com a while back and there were several women who replied that their children did have issues with cow’s milk proteins during infancy…I am not sure if any of their babies actually had FPIES or a milder form of a milk protein allergy. As of now there has been no research that has investigated a link between the 2 problems.
      If you are GF (not sure if you are but I am assuming you are), then I am assuming there would not be gluten in your breast milk. Have either of your sons had adverse reactions to gluten (if they have been exposed?) What have been the main trigger foods for both of your boys?
      My oldest who did have FPIES, but is now 7, does not seem to have problems with gluten, but she is still young. Our household is GF but my kids do eat gluten at birthday parties, school events, etc. so I keep a close eye out for reactions when I know they’ve consumed gluten outside of the home.
      Jess

      1. Amy

        Yes, IAFFPE is the strong voice our FPIES community has needed — I’m excited about their efforts. FPIES seems to be at the more serious end of the milk protein spectrum — our pediatrician has seen a dramatic increase in milk protein issues but had never heard of FPIES until we came along.

        My boys have both been sensitive to wheat through breastmilk (blood/mucus in stool) but have tested negative in blood tests for Celiac and IgE. Their most significant common triggers have been dairy, soy, and rice, but they each have their own distinct list of sensitivities to foods like apples, buckwheat, avocado, eggs, etc. It’s a maze!

        So glad to hear your daughter has outgrown her dairy sensitivity and has avoided problems with gluten. I love success stories!

        1. Jess Post author

          Hi Amy,
          I work with newborn babies and it seems that the numbers who are born with milk protein allergies (non FPIES end of the spectrum) are skyrocketing. What I’ve also noticed is that more and more of the babies are reacting to milk proteins in their own mothers’ breast milk. There has to be an environmental factor playing a role in this.
          I have encountered many medical practitioners who do not believe in the diagnosis of a milk protein allergy, because it did not “exist” 15 to 20 years ago when they were trained. It is similar in a lot of respects to Celiac Disease, as it was rarely tested for 15 to 20 years ago.
          I really appreciate that you have shared your experiences with FPIES on here. Thank you so much!
          Jess

  4. Katy

    As a mom to a 12-mo-old just diagnosed with FPIES this week, I was happy to read your article and know that doctors are thinking through these issues. Thank you! I pray there will be a breakthrough soon. You might be interested in my son’s history. Samuel developed moderate eczema, then a MRSA infection, and then severe eczema, head to toe, at 4 mo. Several dermatologists told us that changing my diet (he was exclusively breastfed) probably wouldn’t help him. He was pitiful, and I wasn’t coping well. Finally, at almost 6 mo, we saw an allergist, and he tested + for IgE to egg, milk, turkey, chicken, and fish. After I cut those from my diet, his skin cleared beautifully within 3 weeks. When we introduced solids, he seemed to do ok until maybe the 4th time he had avocado – and he vomited 2 hours later for about 2 hours. We thought it was a stomach virus. He had the same reaction the next time we fed him the tiniest crumb of avocado, then again when he had cheerios (2nd time with cheerios), and oatmeal (1st time), and when someone accidentally fed him an animal cracker (wheat – 1st time). I read about FPIES online, and our pediatrician, whom we love, had never heard of it. Our allergist said it could be FPIES or eosinophilic esophagitis. We did a blood test, which came back + for avocado, wheat, oat, and almond allergies. Those were all new in Nov, that he didn’t have when tested in June (except for possibly avocado, which they hadn’t tested for before). And he never had almond directly, just through my breastmilk. We decided to get a 2nd opinion from a pediatric allergist in a large city, and he did another skin prick test, which turned out + for new allergies: peanut, walnut, pecan. These must’ve been acquired through my breastmilk, too. I’m not a scientist, but my fear is that there’s some link between his FPIES reactions triggering IgE allergies. Our new allergist was hopeful Samuel could outgrow FPIES by 18 mo, but I don’t know how many FPIES patients he’s treated…need to ask next time. He said to begin reintroducing solids (I’d stopped after the 5th FPIES reaction) and to start EleCareJr. I wish there were some data suggesting that delaying reintroduction of solids would let them outgrow FPIES, and I would keep exclusively nursing as long as possible…even though I’m not sure how what I’m eating is affecting the development of new allergies. I’m uncertain of eating anything now. I’ve never been tested for celiac but have a history of IBS with spastic colon. I always thought there was probably nothing to the GMO hype, but now I’m not sure. Surely if this were merely genetic, we would’ve known stories about babies in our families that were never able to eat solid foods and couldn’t survive.

    1. Jess Post author

      Katy,
      Thank you for so bravely sharing your story about Samuel. I think that there are a lot of us mothers who are independently trying to figure all of this out, and I wish that there was some way that we could all get connected and really put our heads together.
      First of all, is you have a history of IBS and haven’t been tested for celiac disease, it may be worthwhile to go through the testing now. Dr. Alessio Fasano, who is the director at the Center for Celiac Research at Mass General in Boston (you can find his research and articles on pubmed.gov) has been doing a ton of research on zonulin, which is a protein that is linked with the development of “leaky gut,” or increased intestinal permeability, in people with both celiac disease and other autoimmune diseases. When one has elevated zonulin, the tight junctions in the small intestinal tissues loosen, and large food proteins are able to cross into one’s bloodstream. In adults with celiac disease, this can lead to food intolerances and early research is showing a possible link with the development of IgE mediated food allergies in those with leaky gut.
      There is not enough research yet to show whether or not the food proteins in the bloodstream (i.e. milk proteins) can cross the placentas of pregnant women and cause in utero sensitization, but I suspect that this must happen. In just the last 2 days I have had 2 of my newborn patients get very ill on their first days of life to exposure to formula with cow’s milk protein (they must have been sensitized in utero, otherwise there is no logical explanation for them being born with allergies).
      I am also starting to wonder if some of the babies with milk protein allergies/FPIES also have increased intestinal permeability going on from the get go. It’s becoming pretty clear that there is a large transfer of bacteria from mother to baby during a normal vaginal delivery (and that the bacteria that a baby receives forms his/her intestinal micro biome). I’m wondering that if those of us with digestive issues, such as IBS, Celiac, Crohn’s, etc, who are high risk groups for having an overgrowth of “bad” bacteria, inadvertently cause our babies to start life with less than optimal microbiomes.
      These are just a few of my hypotheses based on what I have learned about celiac disease and leaky gut, and what I see on a daily basis in my practice as a neonatologist. I hope that others will eventually read our comments and pipe in with their thoughts. Perhaps we can figure all of this out together! Thanks again for sharing your story!
      Jess

  5. Teri Simpson

    I really think my Grandbaby has FPIES. There have already been a couple trips to the ER after eating certain foods. The first was baby food with oatmeal in it. The last one was from eating whole grain baby cheese curls. Now we are afraid to give her anything. She is breastfed and formula fed and doesn’t seem to be any allergy there. Or at least not as great as the throwing up and lethargy. It doesn’t seem like the Pediatrician is too interested. My daughter has tried changing doctors, but with Medicaid no one wants to take new baby patients. She has also had some rashes. Once from Raspberries for sure. Its very scary and frustrating. I am so glad to see other people post about this, and please keep posting!

    1. Jess Post author

      H Teri,
      I am sorry to hear about your grandchild’s possible diagnosis of FPIES. Is she on a special formula to supplement her breast milk, or is she able to handle a regular cow’s milk protein based formula?
      If she’s gotten ill from oatmeal and other foods with whole grains, you may want to consider having her evaluated for celiac disease. It is possible for infants to react to gluten, even when they are pretty small.
      Anyway, I hope that you are able to find answers. Please encourage your daughter to breast feed as long as possible too. It sounds like she is lucky to have you as a grandmother.
      Jess

  6. Liz Knight

    HI Jess! Just happened upon your blog today and thank you for writing this! My 3 y.o. son has IgG allergies to cow’s milk, eggs, yeast, honey, mushrooms, & pineapple. You may be interested in seeing the research that is listed on the Great Plains Laboratory’s website. This is where we got our testing done. Dr. Shaw has studied this a lot and has a lot of tests and info. http://www.greatplainslaboratory.com/home/
    Since we’ve removed these from his diet, he is a new kid!! I hope to create more awareness about this other food allergy type so that more people will understand and no go undiagnosed for as long as we did. We went from Dr. to Dr. trying to understand his violent ADHD & poor sleep habits. It was exhausting, scary, & painful. I would not wish this on any family. Many people do not understand the gut/brain connection. Have you read the GAPS book yet by Dr. Natasha Campbell-McBride? http://www.gutandpsychologysyndrome.com
    Anyway, I just started a FB group to help parents like me who have kids with this type of allergy. A Little Gut Feeling-Food Allergy Gut/Brain Connection. I have shared your blog post with that group and others. :-) Thanks! https://www.facebook.com/groups/ALittleGutFeeling/

    1. Jess Post author

      Hi Liz,
      Thanks so much for introducing yourself. I have love meeting new people through having this page. I am very interested in autism because my 24 yr old brother is on the autistic spectrum, so I will check out Dr. Campbell-McBride’s book. We are actually in the process of figuring out if my 2 year old daughter has a cow’s milk protein intolerance (she was breastfed and I then kept her off of milk since we had so many issues with my oldest who I wrote about in the post), so I will check out Dr. Shaw’s page as well. Would you mind if I share your FB group on my FB page for others who may benefit?
      Jess

      1. Liz Knight

        Yeah, Jess, check it out. Dr. Shaw’s research is really interesting. He has a LOT of info on Autism. And of course I don’t mind if you share my FB group on yours! I really want to bring awareness and help others who may be struggling like we did, and still do. Thank you! https://www.facebook.com/groups/ALittleGutFeeling/
        Also, I just started a blog, so here’s that, as well. http://alittlegutfeeling.blogspot.com/
        Stay tuned for some good stuff there. :-)
        Again, thank you for your work and the time that you put in to this blog so that all of us can benefit. (and our families!)

  7. Claire

    Jess,

    Thank you for posting this! It has been truly enlightening.

    I have Celiac disease and I have been eating gluten free for the last eight years. For the last couple of years, I have had problems with my gut. I keep thinking that I should be feeling better! An endoscopy and colonoscopy three years ago said that I was looking great, but I wasn’t feeling that way. Is it possible to have a leaky gut that doesn’t show in those procedures?

    I ask because my daughter (10 months old) has had severe reactions to the cow’s milk protein that was being passed through my breast milk. She has shown lesser, but still quite noticeable, reactions to eggs and corn. However, there seems to be something else wrong. From your posts, I’m wondering if it is the soy that is hidden in many store bought products? Do you have any thoughts? She has also just started eating some solids, all of which I am making at home. She doesn’t seem to have any serious reactions to those yet – just a facial rash which may be from teething.

    Finally, I am very concerned about re-introducing dairy. Do you have additional recommendations on how to perform an oral food challenge with dairy? You suggested going to a doctors office, any suggestions on how much dairy or what form (yogurt, milk, etc.)?

    Thanks for your help! So glad to find this blog!

    1. Jess Post author

      Hi Claire,
      You have some really great questions that I will try to answer to the best of my ability…
      I am working on an article about non responsive celiac disease (NRCD) for a large GF magazine right now. NRCD is when people with celiac disease either have continued symptoms after being on the GF diet for more than 6 months, or, have symptoms recur after a long period of time of feeling better on the GF diet (which sounds like you!) The most common causes of NRCD are chronic gluten cross-contamination, IBS, small bowel bacterial overgrowth, fructose malabsorption, and lactose intolerance. I was reading that in many of these conditions, the small bowel mucosa will look normal or almost normal. So it may be possible that you have one of these problems going on.
      Since writing the post about FPIES last year I learned that my ongoing IBS/leaky gut symptoms were from untreated mast cell activation disorder (MCAS). I have also learned that in other countries, such as Germany, that 10-15% of the adult population has mast cell activation syndrome, so I suspect that this problem is affecting a lot of women both during pregnancy and while breast-feeding (and causing intact food proteins to cross to fetuses via the bloodstream and to babies via breast milk). I am also suspecting that maternal MCAS is playing a role in the skyrocketing rate of rise of food allergies in the pediatric population (it can explain, in part, why the bulk of infants and kids with food allergies have been breastfed, which is supposed to be protective).
      Milk protein and soy protein intolerances often coexist, so I would not be surprised if your daughter is having problems with soy. I just attended the International Conference on Nutrition and Growth in Barcelona last month and I believe one lecturer stated that 60% of infants who cannot tolerate milk also have soy protein allergies/intolerances.
      I have to be honest that it has been a long time since I’ve actually seen on oral food challenge take place (last time was when I was a pediatric resident rotating thru an allergy rotation and the toddler took small bites of a piece of cheese pizza over a 2 to 3 hour period). With my daughter Grace I believe that we just started with small spoonfuls of yogurt, then moved on to pieces of shredded cheese, ice cream, etc. She always refused sips of cow’s milk. The earliest we started the yogurt was around 2 because that is what her pediatrician suggested nd she did not have any issues. We had her on Neocate until she was 12 months old and then she was on soy milk until age 2 (she has always been able to tolerate soy). Since then we’ve given her a calcium and Vit D supp everyday (we do this for all 4 of our kids) and try to encourage calcium rich foods. She is a really healthy, active 8 year old now.
      I hope that this helps. We are really in a gray area right now and there is no exact science to any of this, which can be frustrating at times. I always encourage moms and dads to trust their instincts when it comes to their kids, which is seems like you’ve been doing,
      Good luck and feel free to write at any time!
      Jess

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  10. Karin Kennedy

    I came across your website today searching for fpies and celiac connections. My sons story is so convoluted it’s hard to know where to start. My son is 7 and his history includes a tendency toward anxiety. Issues as an infant and toddler with diarrhea, gas, loose stools which was chalked up as milk protein sensitivity. Never tested for food allergies and exclusively breast fed, started solids at 6 months but still nursed with no milk until one year. We went off cows milk around 3 yo and tried soy and goat with no luck and finally ended up on almond milk and the digestive stuff went away. So at age six is diagnosed with FPIE from Haddock. The allergist at CHOP said the milk was probably the same thing but he had likely outgrown it by now. His anxiety like behavior, which was only evident with trying new things or routine changes, lack of sleep etc, had worsened last summer. Started becoming increasingly violent for brief spurts in an overreaction to an event or comment. Never like a temper tantrum, not in response to something he couldn’t have or do. Always seemed overblown and out of proportion but very scary. He has two younger sisters as well. So we did therapy and were assigned to a social worker. Saw her four or five times in the fall. Coincidentally, went gluten free because my mom has a gluten intolerance. As we did it at home, I noticed a change in his behavior. Weekend were awful after pizza night at grandparents and soccer snacks, etc. he had the allergy appt coming up for the FPIES so we tried exclusively gluten free for two weeks prior and it was a new child. No anger, no fighting, no violence. It’s been six months and whenever he acts out I can always trace it to gluten. So last week I start letting him buy milk at school to use up his account money. Inadvertently had a gluten exposure early last week and had a rough week. Friday bought milk and Sunday had a violent meltdown but in public (at church) for the first time. I thought it was still the gluten withdrawal combined with lack of sleep from the weekend. Monday he had milk and then two milks on Tuesday. Tuesday night (yesterday) he had another meltdown and we videotaped it. We have to physically restrain him for almost an hour when it happens. I emailed our homeopath and he sent me a link to an article about milk and behavioral reactions in children. But I started thinking about gluten withdrawal and read some blog posts on FPIES sites and saw an overwhelming number of mothers mentioning these violent behaviors from their children during a FPIES episode. Both diseases are non IgE mediated responses but you hear little connection made. So say my son doesn’t have an extreme case of FPIES but DOES have the behavioral withdrawal symptoms associated anecdotally with FPIES and Gluten. Both are reactions to food protein and those reactions are almost identical. Research that I’ve read only does radio graphic studies of the gi system. There needs to be research done on the neurological response of the brain to the food presentation and then withdrawal. There must be a link. Every FPIES blog mom says the allergists have passed the behavior portion off as unrelated. Obviously as moms, there’s so much concern for the physical illness, that it’s easy to overlook the behavioral side or chalk it up to feeling miserable. But I’ll tell you that no misery would drive a child to try to hurt themselves or others on purpose. There must be chemical brain changes occurring and some CT scans would show that. I am on a mission to find someone who can and will do this research. I plan to email every member of every FPIES research team currently putting out publications. If you have any leads, please share them.

    1. Jess Post author

      HI Karin,
      Thank you so much for taking the time to write and share your experiences with your son. I agree with you that there seems to be a group of children who are both gluten and milk protein sensitive (some seem to have celiac and others non-celiac gluten sensitivity) and have behavioral and/or neurological problems. I just wrote a new post about neurologic signs and symptoms of gluten sensitivity in kids. It seems like this problem runs in families and is often in families who have other family members with environmental allergies and/or autism. I’m starting to think that overactive mast cells are somehow playing a role in this (that in certain kids that gluten and milk proteins are triggering mast cells to release too much histamine, which then wrecks havoc on the brain and nerves), but this is all speculation. Since writing this post last year I was diagnosed with mast cell activation syndrome, in addition to celiac disease, and it seems like there’s a link between FPIES and mast cell activation. As far as I know the medical research into all of this is scant, and I have just been trying to put the puzzle pieces together a little at a time.
      I hope we can keep the conversation going through here. Thanks again for all you shared.
      Jess

  11. Kim Evans

    Hello Jess,

    My son is almost 14 months old and was diagnosed with FPIES on Friday. He was born at 39w but had to have a 5-day round of IV antibiotics at birth due to chorioamnionitis (byebye all bad and GOOD bacteria!). He had a long list of ailments in his 1st year: chronic constipation that led to delayed gastric emptying, severe reflux that was diagnosed as Sandifer’s Syndrome w/o neurological complications (he would hold his breath until he turned purple – nightmare!), milk and soy MSPI “allergy” that had us first on Alimentum and then to Elecare when his constipation and eczema would not go away, “failure to thrive”, constant ear infections that led to tubes at 7m, etc. At 13m my pediatrician decided to do the blood-based allergy testing, and everything came up negative. She then sent us to an allergist who did skin testing (surprise – all negative). However, he did say that he felt that my son has FPIES, and after some research a light bulb finally went off in my head. It explained so much!

    Right now our list of adverse reactions is relatively short compared to many – dairy, soy, almonds (almond milk), peas. He is also gluten free (since birth) because I have celiac disease and was told that he has a 25% chance of developing it as well. As far as I know I have been gluten free for a number of years (including pregnancy), but cross contamination is always a concern. I also had gastric bypass surgery 5 months before (accidentally) getting pregnant. I would not be surprised if I do have a leaky gut. I have put it through a lot! :)

    As far as the rate of misdiagnosis, we have seen multiple different pediatricians, a pediatric ENT, pediatric GI, allergist, etc and finally have a FPIES diagnosis on 7/18. I am extremely persistent, and I strongly believe that is the only reason we finally have some answers. I imagine that the number of children with FPIES is probably several times that of the number actually diagnosed because not every parent will keep searching for answers (or have finances/insurance that will allow them to do so).

    I would be interested in hearing what evidence you have seen about the link between maternal celiac disease/leaky gut and future diagnosis in the child. My allergist wants for me to introduce gluten to my son for the sole purpose of doing a blood test to check for celiac. I’m extremely reluctant to do that at this time because he has been through so much. He is finally a happy, healthy, growing boy, and pointless challenges do not seem to have any added benefit at this time.

    Any information that you can provide (or need from me) would be very much appreciated! :)

    1. Jess Post author

      Hi Kim,
      It is nice to “meet” you. I really appreciate that you’ve felt comfortable sharing all that you’ve been through with your son, and I agree with you that you probably would never had found the answer had you not persisted.
      I unfortunately have no scientific evidence or research to support that maternal celiac disease (with the concomitant increased intestinal permeability) contributes to FPIES, as no one has yet done research into this. I have a hunch that it’s the case with my daughter, and I’ve interacted online with many other moms with celiac disease and NCGS who have babies with FPIES, but for right now we are just a series of “case reports.”
      There is good research to support that all of our kids are at risk of celiac disease, and depending on the study, the risks of celiac disease in 1st degree relatives of celiacs (parents, siblings) is 5-20%.
      If your son has been GF since birth and is happy and healthy, then he doesn’t have celiac disease (from what we learned at the International Celiac Disease Symposium last fall, 3 things have to be present for celiac disease to develop: genes, an environmental trigger–i.e. viral infection, overgrowth of bad bacteria, etc., and exposure to wheat). If he’s had a few exposures to wheat then I guess that it would be possible, but unlikely at this point. I would be really hard pressed to put a happy healthy GF toddler through a gluten challenge right now if you plan on him continuing to be GF. Also, there is a new blood test in development that looks really promising that will require only a 3 day gluten challenge…it should be available in a few years and this is the route that I plan on going with my 3 oldest gluten-light kids. We just put my youngest GF because she began to have fevers and diarrhea after gluten exposures, and even though her celiac tests (antibodies and then small bowel biopsy) were normal, she clearly is on the gluten-sensitivity spectrum and I’d like to prevent her from developing full-fledged celiac.
      So, I’m not sure if I’ve answered your question, or babbled, but I’d love to keep the conversation going. If I could re-do my medical training again I would have gotten training in peds GI and I’d be up in Boston researching all of this stuff in babies (FPIES, gluten sensitivity, the microbiome, etc). Instead I’m a neonatologist in a community setting!
      Jess

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