I've been advised to repost this here from the breastfeeding problems forum as someone kindly suggested people here might be ale to help me.
I have lurked for quite a while on these forums and am hoping that someone can help me as I am nearing the point of stopping breastfeeding but desperately don't want to.
Apologies for the long post but wanted to give full background. My DD2 was diagnosed about 10 days ago with breast milk colitis. At around 10 weeks she began to have increased stool frequency and increased mucus (her poos always seemed a bit sticky since the first ones) then she had blood and we had a month of very bad poo with mucus, occasionally streaked with tiny flecks of blood in the mucus) and dark green stools with dark green flecks. The smell was very sulphur like too. After the first episode of blood flecks I gave up dairy (so around 10w 4days) and saw very little improvement after a couple of weeks, so essentially went on a total elimination diet at around 13 weeks).
At 14 weeks, we finally got to see a Ped Gastroenterologist (we're in London UK) who diagnosed breast milk colitis and immediately told me that the only thing I could do was put her on Neocate. I was reluctant to do that as I felt that her poo was slightly improving at that stage with the elimination diet (they had returned to a better more yellow color) and the smell was a little better and I really wanted to continue to breastfeed - my DD2 breastfeeds to sleep and I believe most of the time it's a comfort to her. He reluctantly said that he would refer me to a dietician the next day and let me continue for 2 weeks and then if there was still mucus and blood then I would have to stop feeding her. I was also given antihistamines for her to take 2x a day.
I went to the dietician who was more supportive, but told me to avoid Milk, Egg, Wheat & Soya as my diet was too restricted and unsustainable. These would be the likely causes of the allergy and that I should introduce more foods into my diet (at that time I was restricting myself to rice, ricemilk, a couple of types of meat, potato, banana, plums, and salad leaves such as spinach, lettuce,cos, lollo rosso but no seeing improvement. I expanded my diet with a couple of foods (fruit juice and nectarine, more meats inc. pork, chicken, but DD2 immediately got worse) I am now eating just lamb, quinoa, potato, banana, pear, pure allergen free sunflower spread, salad leaves, avocado and occasionally a rice cake.
We are still seeing no improvement and we are at almost 16 weeks. She has still had mucus and occasional blood flecks on and off even after following the very restricted diet now. I am also struggling as I don't think I'm getting the nutrients I need and am losing a lot of weight. Can anyone give me advice or help - am off to the doctors again today and I know they will try to push the neocate route and I don't feel like I'm getting any support to continue BF her.
Thanks and sorry for the long post.