E4 with her allergy rash cheeks |
I read an in December. So much of it hit a chord and rang true with me for E4! She continually became intolerant to foods that we would have regularly, she and I weren't healing, etc. I've tried SCD (Specific Carbohydrate Diet), I've tried just eating paleo, I've tried lots of stuff, but I always end up back to eating 6-7 things. I'm tired and can't continue eating that way for several more months. Weaning E4 isn't an option, because I'm still about 90-95% of her food source. At least she's getting antibodies, vitamins and minerals from my breastmilk. She is now 13 1/2 months old and I'm happy to continue breastfeeding her until she's ready to eat enough to support her body.
We've tried allergy testing. First, we did the regular blood test at our pediatrician's office. It came back negative for everything for E4, but E3 tested positive to being allergic to egg whites. I expected E4 to be allergic to eggs, as she had gotten hives on her face right after eating eggs the three times she had them. So, we went to a local chiropractor who is knowledgeable in nutrition. Dr. Mallory Rupp performed an IgG ELISA test for E4, which I blogged here. It helped some, but since it will show negative for foods that we haven't consumed in the previous three months, when we tried some of the non-reactive foods, E4 still reacted. With the egg allergy concern, we took E4 to an allergist. Dr. Jeff Nelson, at Midwest Allergy and Asthma, is such a wonderful guy. He's kind to the kids and really listens to my concerns and my ideas on how to proceed, as well as telling me his opinion and offering any help he can. He did a scratch test on E4's back and she came back allergic to eggs (I wasn't surprised). He gave us a prescription for Epipen Jr, just in case.
Finally, I read the article on Nourishing Our Children, and I wrote to Anne Fisher Silva that night! I was praying that she would be able to find us some answers, but I was also very cautious and not convinced it would help, as nothing else had solved E4's problems. I had a couple very hard periods, where I didn't want to keep nursing, but I couldn't stop, since E4 couldn't eat anything except chicken and honey. Anne wrote back a few days later and asked me to give her a call. I called and we talked for about twenty minutes. She thought she could help. She wanted to test me, as well as E4, since I'm nursing her. She explained in our call yesterday (the one with results) that because my body is sensitive to certain foods, it can't cope and ingesting my sensitivities, along with hers makes my toxic load too big and spills into my breastmilk. This is what I had been thinking all year, but I still believe that my breastmilk is better than anything else I could have given her, since everything else has some of her allergens or intolerances in them. We did try a special formula, but she wouldn't drink it and it turns out that she's very intolerant to some of the things in it. I was going to try to make her the Weston A. Price formula with goat's milk, but I had a hard time finding the goat's milk, then wouldn't have enough of a supply to keep making it regularly.
The foods that I had been regularly eating for the last month are chicken, garlic, honey, peanut butter, chocolate, occasionally lemon juice for Garlic Lemonade, and bananas (but only every other day or less). E4 was only able to eat chicken and honey, without having sleep disturbances, but she was having facial rashes and hives. I was unable to pinpoint what was causing her rashes in the last couple weeks.
Our appointment was scheduled for February 4, at 5:30pm. She said it would probably take a couple hours, so I planned for my husband to be around to play with the kids, while I was on the phone downstairs. A couple weeks ago, I wrote to her in desperation, asking if it was at all possible to move the call up, because I was barely hanging on with being so limited. She had a time that was available, so yesterday at 3pm, it was finally time to go over our test results.
She ordered the MRT (Mediator Release Testing) for E4 & me, and the GI Health Panel for me. These tests were expensive, but for us - completely worth the cost. On the GI Health Panel test (it tested stool over three days and saliva on the last day), the only thing that wasn't right was my mucosal lining in my intestines. The normal range is 400-880. Mine is 14. That is not good, folks! No wonder I have trouble digesting foods! Anne said that usually the reasons for such a low number are bacterial infection or food sensitivities. I tested negative for bacteria, so it had to be food sensitivities.
Next, we looked at the MRT test, which showed any food sensitivities, and isn't limited to only things I've consumed in the last three months. It turns out that I'm sensitive/intolerant (I'll use those interchangeably) to almost all dairy (goat, cow), Black Pepper, Scallops, American Cheese, Hops, Clam, Mint, Cola, Peanut, Cottage Cheese, Pistachio, Cow's Milk, String Beans, Dill, Sweet Potato, Blue #2, Tomato, Green #3, Turmeric, Grapes, Vanilla, Hazelnut, Whey. I'm not surprised by the grapes or peanuts, but pretty surprised by a lot of the other things.
E4's results showed that she's sensitive to: Asparagus, Maple, Banana, Quinoa, Buckwheat, Sesame, Corn, Shrimp (I suspected), Cow's Milk, Almond, Hops, Apricot, Onion, Broccoli (wondered), Raspberry (not surprised), Chicken (WHAAAAAT? But explains her facial rashes), Sweet Potato, Cottage Cheese, Tea (Black & Green, no more kombucha :( ), Garbanzo, Walnut, Goat's Milk, Yellow Squash, Hazelnut.
E4's IgG ELISA test showed that she was intolerant/sensitive to: Apple, Green Beans, Cashew, Eggplant, Grapes, Grapefruit, Lemon, Oranges, Peaches, Pears, Sweet Potatoes, White Potatoes, Black tea, Avocado, Bay Leaf, Iceberg Lettuce.
She's minimally intolerant to Carrots, Cauliflower, Celery, Cocoa, Cucumber, Green Olives, Onions, Oregano, Green Pepper, Spinach, Strawberry and Tomato.
I will be cross referencing all four lists to come up with one list of foods I can't eat, and use the foods that showed little sensitivity in the MRT tests to try out.
Anne said that there will probably be some residual reactions leftover from the foods she's intolerant to getting out of our systems. My friend, Holly, preemptively reminded me not to freak out if E4 had any detox symptoms, and to stay calm and ride the wave. Love her. Anne also said that we don't know how much any one thing is affecting her, so we're keeping these foods out for six months. Anne wants me to make bone broth with good bones and the veggies that are ok for us both. Bone broth is very healing, and will help my mucousal lining grow back. Since I won't be able to have wine, she suggested a brand of vodka, Tito, to try with unsweetened cranberry juice & stevia.
I'd like to talk about Anne for a minute. A lot of care providers (drs & nutritionists) do their best to support us and are kind, but they don't truly understand. I've also encountered many providers who had been dismissive of my symptoms and issues (8 years ago). I didn't know what to expect from Anne. I was so appreciative to find her kind and sensitive, willing to truly listen and work with me. I've had to become an expert on E4 and me, I haven't been able to trust anyone else to know what's going on with us or usually have much helpful advice. It was so nice to have someone to talk with that understood my concerns, what I was talking about and have some helpful information and action plan. This was our last resort. I had nowhere else to turn and nothing else to try. I am so thankful the Lord provided the Nourishing Our Children's blog post and for Anne and her experience. I teared up several times yesterday towards the end of our call and was positively GIDDY the rest of the day! We have a plan! Help is available!! Praise the Lord!!!
After all we've been through, I would've paid three times as much to have answers. I wish we'd known about this three years ago!
Girl, I am bookmarking your site to dive into deeper later! My youngest has had problems since about 6 months (he'll be 2 on Mon)... even got slapped with the label 'failure to thrive' for about 6 months or so... I took out gluten & he improved! Then dairy became a problem, so I took that out & he thrived! Then all beans became a problem... I think he's still got some issues we need to find, but I am so thankful that he has grown since we've made his dietary changes!!
ReplyDeleteI hope it helps!
ReplyDeleteWould love to hear how you both are doing. And, just a note- as a LEAP Therapist, stevia is NOT allowed on a LEAP diet until about 4 weeks into it! It, like anything, can also cause symptoms. Or, maybe you just did "avoidance" and not a full LEAP diet? You might check out a couple similar stories where LEAP helped. (There are many great RDs that are Certified LEAP Therapists - that course is 30+ hours just to be "entry level" to do this work.) Anyway, check out my pinterest page, www.Pinterest.com/LEAPMRT and check out the "testimonials" board with the kid with the rosy cheeks! Cleared up with good LEAP diet. Later learned that salmon was a trigger as well as either thyme or rosemary (I forget). Another great story about LEAP reversing FTT - Scroll down and check out the "My son's story" here: http://elizabethyarnell.com/FoodSensitivities.htm . It IS sad that so many people don't know about the MRT test or LEAP Protocol yet. I've heard so many similar stories to yours - people that take YEARS to find the right person to work with.
ReplyDeleteThanks for sharing Mary! If you need assistance implementing the MRT test, you can contact Oxford Laboratories for a referral to a Certified LEAP Therapist in your area, or phone consult is available as well. We are dietitians/nutritionists that have been trained in food sensitivities, especially in the implementation of the MRT test. We have several pinterest pages with recipes that contain only MRT tested foods to make cooking easier. Here is the main LEAP pinterest page: http://www.pinterest.com/leapmrt/ and this one is mine http://www.pinterest.com/dietitiansusan/ and this one is Emily Fonnesbeck's: http://www.pinterest.com/emilyfonnesbeck/ Also, keep in mind that in order to reduce inflammation completely, the MRT/LEAP protocol is not designed to figure out what foods to avoid. If you do that, you will continue to eat foods that were not tested and also potentially reactive. The MRT test was designed to give you a temporary (4 weeks) list of foods to eat - and only those foods (except salt, baking soda, carbonated water). My own grandson developed eczema after his 4 month old vaccine and MRT has helped tremendously. You can see his before and after pictures here: http://www.pinterest.com/pin/321092648402697755/ Best wishes to you.
ReplyDeleteI wasn't following LEAP protocol. We were trying to survive. I believe this test and Anne saved our lives.
ReplyDeleteI've since developed adrenal fatigue and am now dealing with that, as well as recovering from malnourishment due to having had to be so restricted for 4 years to make safe milk for my precious girls.
Susan, I can't help but feel that you didn't really read my story and therefore don't understand that 1. we were not doing well, 2. we had no idea what else to do and è. our quality of life was not good.
ReplyDeleteMy nutritional therapist, Anne, gave us the support we needed. We did this test as a last resort to figure out for sure what my baby and I were intolerant to. And it did just that.
To come on to someone's blog and try to direct business away from their therapist is not appropriate.