I just realized that DD hasn't grown in the past four months at least, maybe longer. She was born in over the 80th % for height and weight, but is below 15% now. She is allergic to soy and dairy. She has had terrible dental decay, resulting in having to have the top four front teeth pulled. She has always slept terribly. Worse when she consumes dairy or soy, but in general, awful. As in, will not sleep without me there, wakes up every 20 minutes to 2 hours (ONE time slept 8 hours straight, ever). Her stool frequently has undigested food, is extremely foul smelling and irregular in frequency and consistency. She always has bags under her eyes and is frequently congested. I suspected gluten was an issue last year, but the ped and my BIL (a physician) blew me off and so I thought maybe I was reading into things. :(
Does this sound like celiac or gluten intolerance? I have Hashimoto's disease and am going in to be tested for food allergies and celiac next week. We have an appointment with a new ped next week. Should I be pushing for testing for her as well? What else could be the cause of all these issues? What testing should we request?
Thank you so much for your time.
I hope you don't mind my replying to you with a bunch of questions first. That's the nice thing about this forum rather than just one Q and one A : )
How old is your daughter? How long did she keep that 80 percentile? How did you determine the dairy and soy allergies? How does she wake up during the night (every 20 mins to 2 hours as you say)? Does she awaken with screams or cries? or just with nudges to nurse or wanting a bottle? Does she have much gas? Tell me a little about her diet right now.
As you are suspecting, gluten intolerance and Hashimotos often go together. Either the same body disturbance causes both, or the antibodies to gluten and also milk may play a role in causing the antibody attacks of Hashi's.
Lets get a little bit figured out here together before you go in for your new ped appointment.
Thank you so much for your reply. I am consumed with this and so frustrated. I appreciate your input!
DD is 32 months.
I honestly couldn't tell you when she dropped percentiles. (Stellar parenting, I know.) I called her old ped's office today to get the numbers, they haven't called back yet. I know the first year at least she maintained well above the 50th.
We determined the soy and dairy by cutting them out one at a time when we started seeing terrible sleep, bags under the eyes, red ring around the anus, congestion, and inconsistent bowel habits.
We cosleep. She wakes up either crying or asking for me frantically.
She is fairly gassy. I wouldn't say extremely so, but probably more than normal.
She was vegetarian until about six months ago, when we added in (mostly) grassfed beef, organic chicken and wild salmon because of our concerns about her tooth decay. She eats lots of smoothies, a few eggs a week, nuts, fruits, veggies, rice, lentils, cereal, quinoa, some homemade baked goods, popcorn and coconut ice cream. She drinks a little bit of juice, but not a whole lot. She gets some soda on the weekends with DH. (Trying to break them of that.) Until recently she ate plenty of gluten in bread and cereal, along with oats.
OK, so she's a little old to be awaking that frequently, unless it's just for a quiet nursing request. That's a great diet and doesn't suggest any reasons for problems. Yes, with all that you describe, I would want to find out about gluten intolerance for her, as a starting point. I think it's a good call. There are certainly many who have gluten intolerance without displaying the blood indicators that doctors have learned to associate with a diagnosis of Celiac disease. It's a little "scary" to ask for the test, depending upon the attitude of the doctor. Some docs will read a negative test along with a complaining mom as a case of a kooky mom and tell other family members that you are being unreasonable and that food avoidances can be dangerous, bla bla bla and this attitude can spread, to the detriment of the child's potential health challenges. On the other hand, if this doctor is more reasonable, it might be worth testing, as a positive result can be very informative and can also bring medical cooperation. Just remember that a negative test doesn't mean that there are no reactions --- you'd just be right back where you are now.
I see you have learned how to remove foods and watch for symptoms, and you know where gluten is. SO, for your own knowledge and the health of your child, I recommend for now that you rather play it by ear with the doctor but that you do your own dietary testing, for sure. That's the real diagnosis. You will want to be 100% with the gluten and oat avoidance, and 100% with the dairy and soy avoidance, otherwise some tiny exposure can cause symptoms and muddy the entire picture; keeping you from learning what you wish to learn. If you feel as though you see some certain improvement in your child, but continue to see symptoms of concern, you may eventually wish to perform a full elimination diet, where you bring your daughter's diet down to just a handful of "safe" foods and then add others in one at a time.
Oh, as to the weights. Her first year sounds quite normal. Most kids do go through short periods, maybe a few months, of a flat line on their growth curve. Some stop gaining a bit when solid foods are first being introduced and others stop gaining when they begin scaling furniture, as the increased exercise burns off baby fat. Maybe your child has become more active lately? There can also be strange moves in children's growth charts when the doctor's office transitions from measuring length (laying down) to measuring height, as shoes are on or off, clothing on or off, and then bladders, bowels, and tummies can lead to at least a few pounds of difference by her age, if all empty versus all full. It may be true that she's not gaining because of some intestinal food reactions but I don't want you to have too much concern over what that says about her health potential. If this were in the first six months, I'd be very concerned. At this stage, you can be observing her developmental stages and expecting her to be a bit ahead of the averages in some behaviors and a bit behind in others. Overall, if you are associating with other children of similar age or are used to young children in your family, you know if your daughter is doing OK developmentally. My guess is that she's fine and that you're doing a great job by making these observations, asking these questions, and exploring your options.
To help heal her gut, yes, that's the ultimate goal, in hopes of reducing or eliminating food sensitivities and providing a healthier base to hopefully avoid or reduce future Hashimoto's, that she may have some genetic tendency towards. Avoidance of anything that causes the gut to react is very important so that you are keeping it out of an angry, inflammatory, reactive state; keeping it off of the defensive mode so that it has the opportunity to heal. Very often, when allergenic foods are avoided strictly for long periods, the gut becomes much less reactive to them or totally loses its reactivity. Be aware that later re-introductions might work fine the first time or two or few, but that reactivity can re-develop over time. Your good observations will tell you what to do.
Next, there are the things that "we" are all learning now that most of us have been missing as a whole for many decades, such as vitamin D (sun, liver, skins of meats/fish, eggs from outdoor-raised chickens, fats from outdoor animals -- all things we've been avoiding), DHA & EPA (fish oils, organ meats), and iodine (kelp, seafood, non-depleted soil-raised crops -- we've even cut back on the table salt used at home that's had it added for good reason. Commercial foods generally don't use iodized salts). There are vegan ways to get all of these of course, but I'm just presenting what's changed in the modern human diet. Olive oil is another great oil to include in diet. It has a low smoking point which means you can cook with it only at very slow/low temps or you can just use it in a dressing or as a spread. I'm sure you are already avoiding trans fats (partially hydrogenated vegetable oils).
Beyond these, daily probiotic use has been shown to be highly beneficial in keeping the gut healthy and in reducing allergic reactions. I like to pick one that has many different kinds of bacteria in it as they all have a little different action. Those that just say non-dairy often have tiny traces of milk in them as the bugs are fermented on milk or lactose. Those that say "no milk" are the ones you're going to want to go for, for now anyway, to keep the picture as simple as possible.
L-Glutamine (it sounds like but is not at all mono-sodium-glutamate), a natural amino acid, has been shown in many studies to be quite intestinal healing. It's often given to premature babies. Recommended doses go as high as 40 grams for an older child or adult, which is like 10 teaspoons/a lot of stuff, but that's high-end for very sick gut of larger person. Even a fourth of that is a lot tablets to be taking, but I'd try to get 3 or 4 grams per day into your child for a short healing period, if possible, and then try to keep up with one a day. It's quite neutral tasting if you want to crush it into applesauce or add to smoothie or such. I've seen chewable tablets at GNC.
Strong anti-oxidants can be anti-inflammatory and otherwise healing. Resveratrol is one good one, found in peanut butter, grape skins, and grapeseed extract. Bioflavanoids are another (but can't be used in those avoiding citrus), found in skin and white stuff of citrus fruits. They're often found in vitamin C supplements. Vitamin C is a weaker anti-oxidant but a good supplement for the gut anyway. Kiwis have about the highest amount of fruits. Acerola or rose-hips are good in vitamin C supps for those who can't have citrus. Turmeric (curcumin, a curry spice) is one of the most powerful anti-oxidants. It's hard to get a therapeutic dose from diet alone, especially with a child's palate, while I know that the supplements might not be very swallowable now. Cinnamon, all of the Italian herbs, and truly most all herbs and spices except for black pepper are great anti-oxidants and gut healers, when tolerated. Obviously I'm not wanting you to provide big supplement tablets of all of these every day. It gives you lots of options though to get some good stuff in every day, knowing that a young child isn't going to be swallowing a bunch of big capsules. All fruits and vegetables have varying kinds of great healing factors and good fiber that feeds the healthy gut bacteria so those are your major target. White cabbage is one that has some very good studies behind it specifically towards intestinal healing (and may be gas-forming at first so go up slowly in dosage if deciding to use it). It works great in smoothies. Aloe vera is very healing for an angry digestive system and can be found in flavored liquid forms so it's more usable with young children.
Additionally, slippery elm, DG licorice, various mints, chamomile, and marshmallow root are soothing to the digestive system. Isn't it interesting that early candies and treats were made out of so many of these things, maybe even mixed with honey (another healer), while now they're all just corn syrup and artificial flavorings.
Thank you for all of the information! My husband wanted me to ask a couple of questions. How accurate is each test - for gluten intolerance, for celiac antibodies, the genetic testing? Is she too young for the testing to be very accurate? Also, do you know of any leading Celiac experts in the field right now. In the event that our ped won't do the testing (our big fear) he would appreciate any other leads for us to follow. :) Thanks again!
The genetic testing is interesting as it can tell a person's risk, even if they don't have active "disease." I doubt that those with a positive gene test should be eating gluten now and just waiting until they get sick enough to stop. Of course, in your daughter's case, a positive genetic test would simply coincide with her symptoms and your current concerns. It's not very likely to get a true false positive with the gene testing or even with the antibody tests. There are those who could be tested and found to be positive, who never recognized any disorder to their health but who could suddenly feel much healthier if convinced to avoid gluten. One way to receive a false negative test for the antibodies is to be on a gluten-free diet when getting tested. If gluten isn't regularly in the diet, the antibody levels can drop greatly. That makes this a good time to test your daughter --- go ahead and keep some gluten in her diet until testing. The genetic test would not have this kind of false negative -- it won't matter whether she's been eating gluten or not.
The antibody tests are pretty self-fulfilling in medical minds, in that medicine uses these antibodies to define the disease. No antibodies, no celiac disease. However, this does not mean that one isn't reacting to wheat or to all glutens by some other immune process. Basically, if a food causes negative symptoms, it's not healthy to consume. There are those who think they have problems with gluten but continue to eat it because of negative antibody tests, only to become positive on tests years later (and years sicker). These are more likely to have positive gene tests. Some who react to glutens will never develop those certain antibodies. There are hundreds of immune, hormonal and neurological components and processes involved in oral antigen recognition and intestinal food processing. A negative test only means that you need to work harder on elimination dieting, and investigate other potential causes, until you find the source of undesirable symptoms. One can try IgE and IgG testing at the same time, or if celiac results are negative, but these can have both many false negatives and false positives, and remember that any food that has been well avoided will not create a positive antibody result. These two tests are also less often positive in very young children who are clearly exhibiting food reactions. So again, negative results are of no help while positive results on these may give you some ideas of other foods to watch out for. There's no need though to avoid every positive food on these tests, as some might be totally fine.
I guess I don't know of any leading experts. I'd just be Googling around, as you would. I know a few local people I'd refer you to in San Diego but you'll want someone in your own area. You could ask around in healthfood stores and maybe local playgroups, or you may have some luck just trying a pediatric osteopath. I do have a favorite website though: Celiac.com. They have various authors but I like the overall attitude. This page http://www.celiac.com/articles/22483/1/Gluten-Can-Cause-GI-Symptoms-in-People-Who-Dont-Have-Celiac/Page1.html gives some good info on gluten sensivity without gluten antibodies and this page http://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html gives you the labs, good info on the tests, and tells how you can order your own tests from home. Some autism websites are even better than the actual celiac sites as they include milk and more. You can also call one of the labs that does the celiac tests and ask for docs in your area who regularly use them, or call Genova Diagnostics, a lab that does lots of great intestinal health and immune testing, to ask for docs in your area. These might be my favorite docs. Sometimes these labs give names of docs who've only ordered once or twice. These are likely doctors who were convinced by their patients to order certain tests and don't really know what's going on (but are at least somewhat open to them), so ask for ones who regularly use these labs.
Some docs will want an intestinal biopsy if other test results are muddy. While I see no big reason not to allow this, I also see no big reason for it. This is only to look further for "official" celiac disease for doctors who don't believe there's any other reason to avoid gluten. For yourselves, if you find that gluten is a definite trigger to negative symptoms in your child, you don't really need a golden certificate to prove it.