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When my daughter was born, she was everything I could have wished for. Her perfect fingers, tiny toes, kissable nose and adorable dimples made me melt. Those first days were a beautiful haven of getting to know our newest addition.
Unfortunately, that blissful feeling wore off after a few days when everything started changing. Within the first week, I knew something was off. She was overly fussy and seemed to always have tummy issues. She was all around an unhappy child and she needed to be held or bounced or rocked every minute of the day. She stopped sleeping at night and I was exhausted.
At one point my husband gently pointed out that everytime I looked at her, I had a stern expression on my face and I broke. I realized that I was not enjoying this baby. I was completely unable to bond with her.
I loved her, of course, and I would do anything to make her feel better, but she was miserable – and so therefore I was miserable too. We were in complete survival mode, just plodding through one day at a time and I felt like a failure. I felt like I must be doing something wrong. I felt like I was letting her down. I knew something had to give.
(Note: This post was originally written when we were 5 months into our journey. We are now 17 months in and I have adjusted a few things in this post based on our experiences. There is a final update at the bottom of the post)
Looking For A Solution
I pulled myself out of my funk long enough to realize that she was suffering from pretty severe silent reflux (like spitting up but doesn’t make it all the way out) and the acid burning up into her throat every 5-10 minutes was making her miserable. On top of that, she had horrible, mucus filled diapers and tons of tummy issues. She cried all day and woke up dozens of times every night. It was a nightmare.
Since my older daughter had a dairy sensitivity as a baby, I had suspected that the new baby would too and I quickly cut dairy out. I was very careful to cut all hidden sources of dairy too, to make sure it was all gone. I was so sure this was the problem but after a few weeks (it can take on average of 3-4 weeks for dairy to be out of mom and baby’s body) we were still having problems.
Some of the ladies in my local mom group suggested that I try cutting out acidic foods like tomatoes and citrus, so I did. Cutting the acidic foods helped. A lot actually. She was still refluxing but she no longer screamed and arched in pain.
I figured that it must still be a sensitivity so I went “Top 8 Free” – top 8 being eggs, fish, shellfish, wheat, dairy, peanuts, tree nuts, and soy. This was so difficult and I cried at the thought of missing out on all these foods but I was ready to do what it took to make my baby feel better. I figured I could live without these things for a few months and it wouldn’t be too bad. Unfortunately, several weeks into that, we still had all of the same problems. They were slightly less terrible but still there.
So I did the only thing I knew to do. While stuck on the couch resting and nursing, I spent hours on the internet researching, determined to find the answer. And what I found was the TED diet – a Total Elimination Diet.
The TED diet saved our breastfeeding relationship. Actually I think it saved my entire relationship with my daughter and with myself. And it definitely saved her health. But a TED diet can be overwhelming, frustrating and difficult to navigate and my hope with this post is to help moms who are in this position to get setup for success.
The Total Elimination Diet
Now before we jump into this, I want to point out that I am NOT a medical professional in any way. I’m just really good at researching and learning and all of this has been done under the watchful eye of our doctors. For the most part, I came prepared with my research and my doctors only needed to sign off on what we were doing. When it comes to baby’s nourishment and health, its vital to make sure we get it right and I always recommend doctor supervision.
I also want to state that while breastfeeding is biologically normal and breast milk is undeniably the best nutrition for babies, there can be extenuating circumstances. Please do not fall into the trap of feeling like breast milk is the only option and that you are somehow a bad mom if you are struggling with breastfeeding. That is simply not true! We live in a very broken world and sometimes that means our babies have issues that require creativity or outside intervention. If you are struggling I would encourage you to find a support group or find a knowledgable IBCLC (lactation consultant).
Having said all that, I was not going to give up on breastfeeding my daughter until I had exhausted all options. So I decided to do the TED diet.
There are two ways to determine food sensitivities. You can either cut out foods one at a time until you find the problem or you can cut everything, get to baseline and then add things back in. She was so miserable and I didn’t want to spend the next 6 months removing one thing at a time while she was still feeling so awful. I made the choice to take the leap, cut as much as I could and then build up from there.
Eliminating foods one at a time is a great option if your baby’s issues aren’t severe or if you have reason to believe it’s certain foods. Most of the time when I’m talking to moms who have babies with tummy issues I suggest to cut dairy first, give it 3-4 weeks and see if that takes care of the problem. If that doesn’t help, cut wheat and soy also. The vast majority of babies with food sensitivities have problems with those three and that will take care of things. If baby still doesn’t respond to those three, then I would suggest eliminating the top 8, which includes dairy, soy and wheat, plus eggs, peanuts, tree nuts, fish and shellfish. Some other common triggers are citrus, spicy foods and caffeine.
However if you have a baby that is up all night screaming, throwing up everywhere, has extreme eczema or has blood in their stool, I highly recommend something more immediate, like the TED diet. The goal of the TED diet is to eliminate all the foods that are causing issues and get the a baseline. A baseline is simply a normal, healthy child. No reflux, mucus diapers, eczema or other issues.
You start with 4-5 low allergen (this list is a good start) foods and give it about 3 weeks to allow all the foods to get out mom and baby’s system. Hopefully after 3 weeks, baby will have reached baseline (most babies will show improvement in just a few days.) Once baby has reached baseline, you add in one food at a time and give 4-5 days to see if a reaction occurs. I personally chose to eat the trial food once, wait 24 hours and if no reaction then eat it again and wait another 48-72 hours. If still no reaction then I considered it a safe food.
If after 3 weeks, you still haven’t reached baseline, or if your baby gets drastically worse, you can switch up your foods. Its possible that one of the TED foods you are eating is actually one of the trigger foods. You can either switch up all your foods or try swapping out one food at a time. When I started my TED, I did quinoa, sweet potatoes, cassava flour, pears and olive oil. I diced and oiled the sweet potatoes and roasted them, tossed them with cooked quinoa and then made cassava flour tortillas. It was not tasty, I promise. Unfortunately for us, my daughter got terrible diarrhea and I strongly suspected the quinoa so I switched it out with some local grass fed, grass finished lamb. Within a week, the major diarrhea and reflux were GONE. I was in shock.
Our pediatrician also noticed the change immediately. After a few weeks on TED, my daughter became a joyful, chatty, content baby. She was no longer up all night, no longer screaming, no longer miserable. She still had some digestive issues and slimy diapers so I knew we weren’t in the clear yet. It took almost 6 months to reach full baseline where all of her problems were gone and I attribute that to just needing time to heal her body.
Planning for the Long Term
Once you reach baseline (or sorta-baseline, in our case), the journey is just beginning. Now you have to come up with a long term plan. Once you reach baseline and are ready to add foods in, its important to add the most nutrient dense foods that you can. You also have to choose items that are low risk. Its quite a challenge! My TED foods, which include salmon, sweet potatoes and eggs are all incredibly nutrient dense. No wasted calories here.
My recommendation is to sit down with a pen and paper and look up the nutritional content of your TED foods. (There is also an app called “Cronometer that will do this for you) Write out every single nutrient they contain and the totals found in the amount you are eating daily. Add up all your foods and then check against the FDA’s recommended daily allowance charts. This is important to identify nutritional deficiencies in your diet to determine what foods you should attempt to add. Alternatively, you may consider consulting with a nutritionist to monitor your foods.
Note: you most likely will not be able to take any vitamins or supplements while trying to reach baseline on your TED. If you take daily medications, you’ll need to account for that as many medications contain ingredients that baby may be sensitive to. Please DO NOT stop taking any necessary medications or vitamins without first talking with your doctor, but if you are having trouble reaching baseline, an ingredient in your medication may be a culprit. You may need to try a different type/brand or you may need to have it compounded by a pharmacy. To give you an example of this, my daughter is VERY corn sensitive and I took a homeopathic OTC cold remedy and she started refluxing right after nursing. As it turns out, the medicine had corn starch as a stabilizer. So this is something to keep in mind.
The very first thing I added after we reached semi-baseline was ionic magnesium. Its literally water and magnesium. Magnesium is one of the most important nutrient to the body and I knew my TED was sorely lacking in magnesium. The next thing I added was a whole food vitamin C source. This was tricky as most Vit C supplements contain corn (which is what 99% of ascorbic acid is made out of) so it took us several weeks, and many fails, to find one that worked for us. Finally I found an acerola cherry powder that she tolerated.
Give it time. Some worsening of symptoms initially may actually be detox from the drastic diet changes mom is making. It also takes some time for these things to work out of baby’s system. The biggest frustration I see moms have with this is that they are at it for 2 or 3 days and there is no improvement. Its going to take time. Even now that we’ve been symptom free for over a year, if I eat a trigger food, we usually deal with the repercussions for a few days. Patience is hard when your baby is miserable but you gotta give it time.
No TED diet looks the same. I had some very high risk foods like fish and eggs that are safes and I have no idea why my daughter tolerates them but can’t handle quinoa – which is a safe for most people. Don’t get hung up on other people’s safe foods. There are no rules to food sensitivities.
A food journal is absolutely critical to find the connections. There are often foods that are connected to other foods. For example, bananas and avocados both have latex. If baby has a problem with one grain or nut, she’ll probably have a problem with others. If she struggles with several animal proteins, you may need to go plant based.
There are no totally safe foods. I’ve talked to many moms who have said something like “Oh, I lived on sweet potatoes and quinoa for a month and it never got better so I just quit.” but remember, quinoa was a big trigger for my girl and sweet potatoes are a trigger for a lot of kids. Just because most people can tolerate something doesn’t mean your baby can. Don’t fall for some “safe food list.” If its not working, then change it.
Your baby can be allergic to anything. My daughter literally reacted to toothpaste that I brushed my teeth with. Really! I had to brush with water only for awhile before I found a solution. So it can be literally anything. It could even be a lotion that you are rubbing on your body that is absorbing into your skin. So when you try anything new, you need to count it as a trial.
Be aware of hidden triggers. I paid a ridiculous amount of money for 100% grass fed lamb and wild caught fish that has never been fed corn because my baby is so sensitive to corn so if you are trialing meat, make sure its high quality. Also things like ground beef can actually be cross contaminated either with corn at the processor (mixing with other ground beef that was grain fed) or I have heard that ground beef can contain pieces of the mammary glands which can trigger a dairy sensitive baby. We failed ground beef pretty bad even though it was grass fed and that’s when I learned it can be contaminated.
Also Many foods contain ingredients like citric acid or ascorbic acid. Sometimes cheap olive oils are blended with cheap vegetable oil and its not on the label. We failed cod liver oil because it has rosemary oil as a preservative – I was told that rosemary oil often has soy oil in it! And I can’t take any supplements in a capsule form because of the capsule and also because of the fillers used to encapsulate. Moral of the story? Read every single label and be aware of every single ingredient, even ones that may be hidden. (And be sure to continue reading labels because companies change ingredients all the time and may add something to a previously safe food.)
How Long Will It Last?
You can continue until you decide to quit or baby outgrows it. There is no right or wrong answer here. I have been at this for
five long months 17 months and it’s exhausting. Its depressing. My family eats regular food around me (because no need in everyone suffering!) and sometimes I just want to cry. Fortunately for me, we have some decent safes and I’m the type of person that is ok with eating the same thing day after day. I also have the nutritional aspects covered. And most importantly, my baby is healthy.
But if you do not have good safes, you are not healthy, baby is not thriving (gaining weight and happy), if the TED is contributing to PPD or PPA (postpartum depression or anxiety), or if you need to be on medication that does not have a TED friendly option, these are all good reasons that you may consider stopping the TED and switch to donor milk or formula. I would never recommend for you to completely sacrifice your health and sanity for your baby. There are other options.
But if you can continue on, then do so. Your breast milk is still the very best thing for your baby. Many children outgrow these allergies/sensitivities by the age of 2, some sooner. And keep in mind, most moms are able to add many new foods to their diet over time so dont look at this and think you’ll need to eat the same 4 foods for 2 years.
Is There Any Way to Cure This?
Yes and no. It really depends on the cause of the problems. If its reflux or eczema, there may be medication for it – that’s not a cure but it is a short term solution and may be necessary for your situation.
In the past year and a half I’ve done a ridiculous amount of research and in my opinion it comes down (most of the time) to gut health. Damaged gut and microbiome is what makes this tick. I wont go into how to heal that – because that is not my field of expertise – but I will say the more I have worked on getting both of us healthier, the better things have gotten.
Additionally, I think sometimes time can be the best healer. Removing those foods that were causing inflammation in both of us allowed our bodies to so what it needed to do. We’ve taken all kinds of supplements – some helped and some didn’t – but I truly feel time is the greatest healer.
A few things that I feel were most noteworthy to our healing journey:
Probiotics. I’m actually not a huge fan of probiotics. I think they are overhyped (they are not the fix-all they are claimed to be) and I think there are too many cheap ones that dont do anything, or worse, make things work. However I do believe in – and we had great results with – GutPro Infant and also MegaSpore. So check into those!
Homeopathy. I know this is a little woo-woo for some people but I really feel like this was a game changer for us. We worked with a qualified Homeopath to get a “constitutional remedy” for my daughter and myself and the changes were obvious. In hindsight, I wish we would have tried this sooner. Homeopathy works by helping to re-align some the “energy” in the body and help remove some of the “catches”. We worked with a lovely lady I was referred to and I have recommended her to everyone I know. If you would like her information, you can visit her website.
Less stress. Stress is actually inflammatory to the body. Working on my emotional responses and simplifying my life went a long way in helping with this. Best of all, this method is free!
Hazelwood Necklace. This is a temporary help in those early days for reflux. The hazelwood supposedly lessens the acidity of the reflux coming up. I don’t have any idea how it works but I know for us it did indeed work and it was a lifesaver until we could find a long term solution. We used this one.
17 month Update
We have now been on this journey for 17 months! Wow! Our current list of foods is close to 50. I batch cook my food and eat the same meals for breakfast, lunch, and dinner – mostly because its difficult to have a “variety” in meals with so few ingredients. We have not had a major fail in a very long time and I suspect that the only real issue she has left is a corn allergy – but I have yet to test this theory.
We had a brief period of constipation after one exceptionally awful reaction where it burned for her to go and then she determined she was never poo’ing again, and that delayed our introduction of any new foods until we get that resolved.
I’m ready to get back to eating normal foods and we haven’t had a reaction in many months as we pass new foods with ease. I could probably just go back to eating regularly but she is so traumatized by trigger foods that I can’t bring myself to risk too many new additions at once. We are currently trialing new foods daily with no hangups!
The really cool thing about all this is that its brought so much healing for me. I had no idea how many low level reactions I, personally, was having to foods until I cut them out. As difficult as this is, I am more than thankful to have gone down this journey for my own healing.
How To Survive
Really, the best thing is support. You need your family to be supportive of your new diet, you need a pediatrician who supports your desire to continue breastfeeding (and doesn’t try to push you into formula) and you need a community of moms who understand what you are going through. I am a part of several Facebook groups that have been so helpful in encouraging me to continue on – plus Ive learned a lot of tips and tricks to make this work. I recommend the TED Mamas Facebook Group and also the Corn Allergy & Intolerance Facebook Group (if corn is one of your triggers.)
At the end of the day its your baby, your body, your life. Only you can make the decision to continue breastfeeding through food sensitivities/allergies. I did it because I firmly believe in the benefits of breastfeeding and I’m determined to do it if at all possible. I hope this post encourages you in your decision and/or your journey!
Are you considering starting a TED diet? Have you ever been on a TED diet? Do you have questions or suggestions? If you have anything that might be helpful for moms on this journey, please leave me a comment and I will update the post (or make a new one!)