My TED Story: How We Beat Acid Reflux!
My baby had bad acid reflux (and I suspect esophagitis). It was so painful, he refused to eat every time I tried to feed him. He would only eat when sleeping, or at the end of the day when he was so starving, the hunger pain hurt more than the reflux pain. He developed a breast aversion from the pain while nursing, and I had to pump and bottle feed. He refused every bottle. I was lucky to get 12 oz a day into him, which is half of what a healthy baby eats. Every day was a fight to keep him hydrated because he wasn’t drinking enough fluids. He wasn’t getting enough calories either, obviously, and fell from 88th percentile for weight to the 38th percentile.
We saw a pediatrician and a GI, both of whom briefly asked about my diet (diary free, low gluten), and then prescribed Prevacid, assuming that dairy free and low gluten was enough, and that it wasn’t a food problem. The PPI helped a little–it ended his excessive hiccups–but didn’t take away the pain. He was on proper dosing or higher for almost two months. We went up to 7 mg above proper dosing per dose. He was still in pain and refusing to eat.
I hadn’t wanted to do TED (Dr Sears’ Total Elimination Diet) because it sounded so extreme, and going dairy free was hard enough for me. But when nothing else worked, I figured it was worth a try. I saw no change the first couple weeks of TED, but the third week he made drastic improvements. He stopped fighting the bottle. His milk intake started going up. By week 4 of TED, he was a whole different baby. His reflux was completely gone. It was amazing. He started drinking a whole bottle at a time, 24 oz a day. His cheeks, which had gotten thin, started to get their chub back.
After a few more weeks of TED I weaned him off his PPI. He was fine. It turned out his acid reflux (and suspected esophagitis) were caused entirely by food triggers in my diet. He reacts terribly to dairy, goat milk, and several other common foods. We’re now adding foods back in one at a time to figure out which ones are safe for him, and which ones cause a reaction.
More about TED:
Everyone’s TED is a little different, because babies have different food sensitivities. For my baby, at the beginning of TED I eliminated all foods except turkey, potatoes, sweet potatoes, quinoa, millet, pears, yellow squash, zucchini, and water. The reasoning behind these foods is that they are very low on the allergens chart. The Joneja Allergen Chart basically takes all the foods and lists them in order of how likely they are to cause a reaction. TED picks the foods from each food group least likely to cause a reaction (or that are very low on the chart). I also used salt, pepper, and olive oil. (Have to make sure the olive oil is 100% olive oil, since some companies add corn or soy oil to their brands. Trace amounts do not have to be listed in the ingredients.)
I almost lost my milk the first week I was on TED. One of the biggest problems with a nursing/pumping mom doing TED is that you’re doing it so you can feed your baby breastmilk, but because TED is so restricted, it’s very easy to lose your milk from not getting enough calories. My supply crashed one week after I started TED, and I had to learn not to let myself go hungry (at all). Now I cook almost everything in olive oil. I eat every time I feel hungry at all. I add oil to every meal. Stir fry is a good meal! Fried potato wedges are a good snack.
After my baby’s reflux symptoms were gone, I started adding foods back in, one at a time. It’s very important to keep a food diary, even just really brief notes to jot down if you tried a new food, or if there was anything else going on that might affect it your baby has a reaction of any kind. There are several different ways to trial foods. The way I picked is to just add in moderate amounts of the new food each day for several days in a row and watch for a reaction (my baby has reflux flare and often slightly green-ish, mucousy poops when he reacts to a food). If his poops are good, he’s eating well, not overly fussy, and none of the reflux symptoms show up, it means the food passed. If any of those symptoms show up, I take the food out, wait a few days for things to improve, then try a different food.
The pediatrician didn’t think there was a problem with my baby not eating; It’s crazy! People would say things like “maybe he’s just not hungry.” Excuse me: he’s getting half the food he should be, and you think the problem is he’s not hungry!???!?
If you are interested in doing TED, or learning more about it to help your reflux baby, here are some tips:
–Join the TED Mamas support group. TED is hard, and support from other women who are doing the same thing is immensely helpful.
–Check out the Joneja allergen chart. It lists foods in order of how likely they are to cause a reaction.
–Eat, eat, eat! Don’t let yourself go hungry. One of the biggest problems with a nursing/pumping mom doing TED is that you’re doing it so you can feed your baby human milk, but because TED is so restricted, it’s very easy to lose your milk from not getting enough calories. Cook your food in a (safe) olive oil, or whatever oil works for your baby. (California olive Ranch brand is 100% olive oil without any corn/soy/etc. added.) Add oil to most of your foods. If you lose too much weight too fast, your milk supply is likely to be compromised.
–Other supplements like calcium and probiotics are a good idea, too, but again, make sure they are safe (some probiotics are grown in a dairy base).
—Keep a food diary and write down any new or different foods you eat. That way you can see what it likely to be bothering your baby.
—If your milk supply drops, there are several supplements that can help boost milk supply. Shatavari, malunggay, and blessed thistle are all great at boosting milk production. Other things that help are galactagogues like oatmeal, brewers yeast, and flax meal. Watch for reactions, though. Some babies may react to certain supplements or galactagogues. (My baby reacts to raw brewers yeast.)
—Be patient. Some babies may respond quickly; others may take a few weeks. It took 3 weeks for me to see an improvement in my baby. Some may be faster; some may take longer.
—If you don’t see an improvement after a few weeks, consider changing some of your base foods. Rice is a base food that many people eat when starting TED, but some babies react to rice. (Quinoa and millet are both lower on the allergen chart, so that’s why I chose those over rice.) Some babies may react to white potatoes, or non-organic meat.
TED Meal Ideas:
Stir fry (turkey/chicken/safe meat, zucchini, yellow squash, safe vegetables)
Two-Ingredient Quinoa Bread
Pumpkin/Sweet Potato Muffins
Ground turkey burgers
Rice pasta with sautéed squash and zucchini
Sweet potato pancakes
Fried chicken/turkey nuggets made with a safe flour
Roast turkey and mashed potatoes
Hain baking powder is safe if you’re trying to avoid corn
Questions & Answers & C (comments):
Q: can you add how you know foods are a fail…would he refuse to eat again or what? I’m always curious
A: He gets fussy and uncomfortable — reflux symptoms return. He also gets greenish, mucousy poops with really bad fails (dairy and goat milk products). He gets very bad gas pains with apricots and uncooked brewers yeast.
C: Similar to my story…I’ve been on a TED for 6 months now but we’re still on Prevacid because reflux still flares up when we try to get off of it and when he reacts to something I add to my diet.
For mommas who are afraid to go full blown TED, just know that it gets better! You will eat again! For me, the anxiety from not knowing what was triggering his pain made it so much better to start from square one and add to it. I can now eat over 60 foods and he is on #10. We wouldn’t have found his reactions to spinach, chicken, or avocados if I would have just eliminated top 8 allergens.
Q: How did you figure out chicken? I thought chicken was basically one of the most bland foods?
A: Because for the complete TED, you are down to eating only a few foods. So when you add a food back in, you can see the reaction. This mom added back in chicken and other things and the baby could not handle it. For me, I could not eat tuna, eggplant, citrus, or tomato products.
A: It’s apparently pretty common and may be because they are fed soy but I’m not really sure. For us it’s not about bland…he’s fine with me having all sorts of hot peppers and hot sauces!!
Q: This info is of great help! Thanks a lot for sharing. Have you started with all the things from the meals idea? Have you cocked yourself the muffins? What about the bread?
A: The muffins are really yummy! I’ve made them several times and right now they’re one of my snacks to grab when I’m hungry. Here’s the recipe below. Here’s the link to the quinoa bread. I have made that once and plan to make it again. (I’ve made most of the other foods I listed, except lamb chops, because I’m not really a fan of lamb. But lamb is low on the allergen chart and safe for most babies.)
C: TED was a life saver for us! Having a baby who reacts to soy and dairy and later to corn just made formula impossible (even if we could afford it or find a safe formula here in South Africa, breastfeeding wasn’t something I was willing to quit unless it was life or death). By the end we discovered she reacted to: dairy, soy, egg, beef, gluten, all grains (including rice, quinoa) and the worst of the worst was corn so we have 0 safe foods that aren’t cooked by me. She reacts to every probiotic I have tried and also to garlic and onion. So we have started on the GAPs diet and it has been amazing; introduced kraut into her diet and it took a few days for the die off symptoms to pass, but now only a week later she is loving it and has slept through the night for 4 nights in a row, the first time this has happened in her life (almost 2,5 years)!! Her silent reflux is also improving slightly so I am hopeful that all the work and lifestyle changes will be worth it and she will heal and be able to include at least dairy back into her diet ) I never would have discovered her specific food intolerance’s without TED and, I have discovered some of my own in the process, as well through weaning her and starting to eat my pre-ted diet. So it’s a win for my own health as well because I sure as heck would not have the commitment to do a TED just for myself
Q: I just noticed the rice milk I used has sunflower oil/canola oil and some other stuff. Is that safe? I started being obsessed with labels, everything has lot more than what I expect.
A: I think sunflower oil and canola are usually not too likely to cause a reaction. If you have some and baby reacts, maybe try a different rice milk. Or a different milk if there’s a chance baby might react to rice.