Help Wanted {Wisdom Wednesdays}

I take my kids to a big pediatric practice that has about six different doctors. I’ve mentioned to two of them that I think August has a problem with gluten. Neither has shown any interest in following up on this report.

I am not a parent in a rush to give my children a life-long illness. I already have one like that and it’s plenty of work. Plenty. I can’t, however, ignore the growing list of symptoms that seem to indicate some kind of dietary issue. Probably most importantly, I’d like some help figuring out whether or not just gluten is an issue or if we have other issues as well.

  • The child is skinny, skinny skinny, and he eats all day long. He eats fruit, vegetables, gluten free grilled cheese sandwiches, cheese puffs, popcorn, beans, soups, stews. He has always eaten more than his twin brother, but his twin brother is bigger and heavier. I can see all of his ribs through his back, but he often has a big belly.
  • He has dark circles under his eyes that come and go. Whenever I see these I know he’s going to be distant and difficult.
  • Warning, poop talk ahead: He is always constipated. He goes regularly, but it’s usually what my husband and I call “rabbit turds.” I just don’t believe that can be healthy.
  • He eats weird stuff. Mostly, he eats cardboard. Now, I know that Pica can be a sign of Autism, but this habit dropped to 10% of what it was when I eliminated gluten. Now, it comes and goes with less frequency, which again, I think it’s being caused by something he’s eating, but I don’t know what.
  • We have a family history of digestive disorders including Chrons and IBS.

I don’t know what to do. I know gluten is an issue, but I’m not completely sure how to handle that–does that mean no gluten in my house at all? Should I never eat things with gluten either? Is it like a peanut allergy or different?

I also think that there may be other problem foods, but I’m not sure exactly what. Maybe dairy? If dairy, what are good substitutes for bottles? (I know they should have bottles at this age, but with a nine month old in the house, they will get a bottle one way or the other, so it’s easier to just give them to them.)

Ideas? Suggestions? I’ve already tried banging my head again the wall and that was no help at all.

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Comments

  1. I honestly recommend taking him to a naturopath instead of a pediatrician.

  2. Katy, he is sooooo cute. I know nothing about gluten tolerance issues but I know I feel much better when I eat less gluten, in general (eating a low carb veggie and lean meat diet). I think that the doctors are feeling a little “meh” about all the gluten hoopla so you may have difficulty finding someone to find you seriously, even when it is called for. I might change my verbage to say IBS or Chrohn’s to have them take note. As one of my son’s doctors told me, gluten sensitivity is the diagnosis “du jour.” Maybe try a GI? Here’s a (((hug))) and I hope you find some good guidance.

  3. He should been seen by a pediatric allergist. My son was allergic to milk and eggs an we went to a pediatric allergist to get help. They will be able to test for food and environmental allergies. Poor guy needs some relief, he must feel yucky:( Kinda surprised your pediatrician didn’t refer you to an allergist already…..

    • I don’t think I made a big enough deal out of things–I tend to downplay stuff especially after Charlie who spent nine month with very serious health issues. Seems silly to worry too much about smaller things, but I know that’s wrong! They are not small things for August!

  4. Maybe also talk to a nutritionist? They probably see more people with food sensitivities than a pediatrician would….

  5. I went to a talk by a very good Occupational Therapist from Florida recently and she said very simple… we need to test our children for allergies. It would clear up all the questions and allow you to know how to proceed.
    That being said… my son has been gluten and casein free for almost 10 years now. And I have seen where he has been the better for it. (No I didn’t do any allergy test)

    You don’t have to make the whole household gluten free but in the beginning it may be easier for you so that you don’t slip and give in to weakness and feed him some tasty gluten morsel like cake. Fortunately in the US there is a whole lot of gluten/casein free products available so you probably wont miss it.

    Doctor for the most part don’t believe in food allergies. Those who do have been affected by or interested in food allergies.
    If you think that milk and gluten are bugging your children by all means keep them out of their diet because they don’t need them. Just my 2 cents

    By the way OMG I thought that was Charlie standing there! Louis is like the stamp of Charlie. 😀

    • Nope! Not Charlie. Funny, I always think August is the one who looks like Charlie, but it’s mostly just the coloring–they don’t actually look that much alike.

      At this point i don’t care what the test says–this kid CANNOT have gluten. It makes everybody’s life terrible.

  6. As to the constipation increasing how much water he drinks should work and I have two friends who have their children on a daily dose of mineral oils that helps ease it… you can ask about that.

    • OK! I have some constipation tricks, but I’ve been worried that if I get things moving, but don’t figure out what caused it in the first place that I might not really be helping as much as I could.

  7. Going to a pediatric gastroenterologist may help–especially given the constipation and other issues. Bertrand’s pediatric GI sees kids with any and all of the issues you just named. Also, it may be easier/faster to get in to see a GI doc than an allergist. Allergists (and ENTs) around here are so booked that they require referrals. I can make a GI appointment myself, without a referral.

  8. Along with other commenters, I think an allergist and/or a GI is in order.

    This is one to appraoch with a pediatrician as, “we have a family history of X, these are the things we see (poop, eating things, poor weight gain, etc). Who should we be following up with to resolve the issues I’ve mentioned? I know gluten issues are the new popular diagnosis, but removing gluten has improved behaviors A, B, and C, so we’re wondering if there’s something else we’re missing”

    • You’re so smart! I should probably say something like that rather than just launching right into my suspicions about gluten. Mentioning gluten probably makes me look like I’m chasing the new “cool” diagnosis.

  9. Tina Stracener says:

    There is an alternative type of test called IgG testing. It is somewhat alternative and may not be covered by insurance but it looks at different antibodies produced in response to certain foods. So while someone might not have an immediate allergic response to a certain food over time these antibodies build up and can be detected. We did this test for my daughter (through a naturopath) and found that she is highly allergic to milk as well as some other foods. Our doctor told us to make sure that the lab is a well respected lab as that is where most of the errors and the controversy in this test lie. I hope this helps.
    Tina

  10. Okay, something just happened to a super long comment I just typed up. Rats! The gist: (1) preorder the second edition to Kelly Dorfman’s book on Amazon (Cure Your Child with Food: The Hidden Connection Between Nutrition and Childhood Ailments). All moms need this IMHO. From reading the first edition, casein intolerance may be in play, as you suspect. and (2) Go see a doc with a biomed approach (i.e. a D.A.N. doctor). Fletcher’s new ped is one (you can see what types of services she offers and generally the flavor of things by looking at her website http://www.wholechildwellness.com), and I couldn’t be happier with our initial consult the other day. Obviously practices like hers are the exception, not the rule, probably even moreso places that aren’t crunchy Northern California. We can talk more specifics any time if you’d like, but I gotta run now. Good luck!

    • Second recommendation for Dorfman in an hour–another one came via email. I guess I gotta get her book, huh?

  11. I can’t offer any suggestions, but I’d consider going to a different doctor. By the way, what a beautiful picture!

  12. For constipation and a healthy gut: probiotics. I can recommend 2 brands but it is helpful to go to a health food store and talk to them/naturopath. I also put 1/4teaspoon in his coconut milk of soluble fiber and about 1/2 teaspoon of psyllium rusks ( natural fiber) in oatmeal. Gluten intolerance certainly causes a bloated tummy. A friend of mine has a son who had the allergy but has outgrown it at age 3, prior she was very strict with foods in the house. All treats we’re gluten free and though she still cooked gluten items, there was always an alternative for him. I’ve read studies and have met parents of kids with autism that control their autism through diet, meaning there is a lot of literature out there linking autism and diet/unhealthy gut. Just something to put out there for (more) reading material.

    • I have read a lot about the gut/autism connection, so I’m with you on that one.

      I’ve got a pretty good probiotic I think–now i just have to remember to administer it!! I’d say we’re 75% on our way to a gluten free household. Charlie still gets traditional pasta, but no one else eats that, and everyone is on gluten-free snacks and bread at this point.

  13. My son was having similar issues including the same poop thing.we knew he was lactose intolerant but we were referred to a pediatric allergist and found out he’s allergic to soy,eggs, and peanuts as well as outdoor allergies. A week into our new diet – he is a changed kid … And poops normally. They dd one blood test and we got so much info. Might be worth reaching out to an allergy doctor to have it checked. Best of luck.

    • Definitely will try to get a test–there are so many possible problem foods–seems like you could be allergic to almost anything.

  14. Paulette says:

    You might try an allergist, but just know that it is not straightforward, and even if all allergy tests come back negative, that doesn’t mean he can eat a certain food. Personally I do not think a “gluten intolerance” diagnosis is necessary. I agree with finding a naturopathic doctor or a DAN/MAPS autism doctor. Yes, mainstream pedis will not be too concerned, neither will most mainstream allergists. If he has a true IgE allergy to gluten, that is a different story, they will pay attention then. IgG testing is controversial and not well understood, and its accuracy is questionable. We just did IgGs on my daughter, and 74 foods came back positive- this kid has no signs of food allergies (as opposed to my food allergy kid). I think a better way for you to determine food sensitivities and intolerances is with a food diary followed by an elimination diet. If you think he is gluten-intolerant, go with it, and remove the gluten-containing foods from your home. If you think you can still have foods w/ gluten in your house and keep him from exposure- great. We were not able to do that, especially if family & babysitters, etc., are not in the same page. It’s easier to remove the food in question from your house and not risk exposure, in my opinion.

    • Um Wow. 74 foods? Are there any foods left?

      Exposure is going to be a problem with gluten I think. People aren’t feeding him gluten, but now that I’ve cleaned him up so much, I’m even seeing some lower-level reaction to cross-contamination. Sigh

  15. What about adding flax to things? One of my adoptive mama friends wrote a post about nutrition and how she fattened up her baby girl with Down syndrome prior to open heart surgery. SHe teamed up with another adoptive mama who had adopted a very malnourished little guy! They’re also gluten free! She swears by bone broth. Here’s the posts with some healthy super foods. recipes

    http://hopefulheartadoption.blogspot.com/2013/04/the-great-big-nutrition-post-final-part.html

    http://hopefulheartadoption.blogspot.com/2013/02/the-great-big-nutrition-post-part-4.html

  16. Looks like you have gotten a lot of good suggestions. While you are finding/waiting for medical appointments I have a few ideas. Since you can tell glutton is a problem but sometimes the symptoms reappear anyway, are you sure that even tho he is glutton free his food hasn’t become cross contaminated with glutton in your kitchen when it is being prepared? Even a tiny bit of an allergen can impact some folks. For the constipation, have you tried milk of magnesia? We had to give it to our son daily for a year or two until his bowels matured, it did trick and he liked the taste. We also feed him tons of berries and watermelon which also helped (but was pricey in the winter). Finally, there are a lot of nondairy milk products which might work if he has a dairy allergy (soy, almond, etc.), however, as they each bring their own potential allergies I might wait until you have testing. Good luck.

    • Oh yes I meant to recommend Milk of Magnesia as well.
      Sometimes food you would never think of having gluten in it include it so be very diligent with labels.

    • I’ve switched the boys over to Almond milk or Almond/coconut blend for their bottles and this seems to have eliminated the constipation. Kind of crazy.

  17. I’m going to vote Pediatric Gastroenterologist too. Children’s has a half dozen on staff.
    I definitely think at least meeting with one would be the first way to go.

  18. no dairy.

  19. Lorena (@lamaschida) says:

    That kid is so cute! Having had a horrible experience with my hospital’s dietician/nutritionist just two days ago, I wouldn’t recommend wasting your time with that. They aren’t trained beyond the food pyramid. My friends strongly recommend natropaths. I have done some research and have found some good info. Check out this website from this clinic in Chicago. It has tons of great info in the knowledge base. http://www.wholehealthchicago.com/

  20. Thank you for sharing that resource, Lorena! I’m definitely trying to do as much reading as possible on all of this stuff.

  21. Love your new look and congrats on writing your book however you decide to do it! That’s a huge and cool accomplishment especially with everything else that you’ve got on your plate! In my humble opinion if you think your son is gluten intolerant, I’d just keep him on the diet. I don’t know much about gluten intolerance treatments , but what else could be done for it besides the diet? Doctors can be jerks and sometimes think mothers are ignorant idiots, but we know better. Mothers are the experts on their own kids! Blessings to you and your lovely little man family!