Very sad to stop bf but think I have to - Page 3

[mama9]

DS and I have BOTH been feeling terrible these few days. The symptoms are tummy pain and gas and nausea for me, and he's having screaming fits and is very unsettled. He does seem to be sleeping so much better though now that I am eating our 'baseline' diet. Right now I am living on lamb, onion, courgette, squash, raspberries, kiwi, olive oil, parsnips. He was weighed recently and is still in 25th centile and the curve has been steady since his birth.

Today I had a blood test done on myself for possible celiacs. My entire history is studded with classic symptoms now that I am looking back at my health and it seems that every day I remember something else that screams 'celiacs'. If my result comes back neg I would be VERY suspicious of the accuracy of it.

So, my thoughts are to write a list of the pros and cons of continuing to bf and to try and unmuddle my head because right now it's all tangled up and confused. I must have some wedges of gluten lodged in my cranium or something

I am still yet to investigate vit/min supps, I haven't done that yet. I am still not on any probiotics. I have tried sauerkraut, but every time I eat even a tiny bite, DS reacts. Kefir was not happening either but haven't tried water kefir yet.

I will get my blood test results next week along with DS RAST results. I am not introducing anything until I get those back although I have a sneaking suspicion that nothing will be detected on those tests. I haven't consumed any gluten for months, I did have a little a few weeks ago but I'm concerned that it will impact the results. The doc didn't think so but I've read differently. Also, DS is still so young at 6 1/2 months old and I'm thinking that it's possible the test won't detect anything. I guess I'm preparing myself for being left in the shadows when it comes to showing myself any evidence - or more about showing the allergist who doesn't believe in allergies coming from substances within breast milk.

With all of the foods he can't tolerate, it seems to me that he just can't digest anything too starchy and too fatty. I could be totally off, but that could be why he can't tolerate bananas, grains, etc. It's even some of the gluten free grains.

Okay, I'm rambling again and will go off and do some more research and jot down my thoughts some more - but on paper this time
xxx

[mama9]

So my poor DS has a virus and his temperature is a little high. It got higher today. I took him in again for the doc to check him over. No rattling in his lungs and no green mucous or anything like that. Just runny eyes, nose and a temp. He has these tummy attacks at night where he doubles over quickly and screams. Thing is, these started since I trialled the dairy a couple of weekends ago, accompanied with bad gas, so maybe the virus is making his tummy worse, I don't know. I feel like crap myself, my throat is dry and rough and my head feels hot. I also had gas when I trialled the dairy. Never happened before - perhaps I'm making less lactase now that I'm not eating dairy.

After having a week with no bone broth, I had some yesterday after slow cooking it for 24 hours and my eye twitching and heart palps have gone, thank goodness for that as I could hardly see straight through it all and deal with an extremely cranky little one. As much as I can't stand the taste of it, broth is my lifeline right now it seems.

Waiting patiently for DS RAST results and my celiac results....

The doctor, a different one, told me today that my celiac test is worthless whatever the result because I've been off of gluten for too long, something like two months with a couple of trials in between. I did ask the doc who ordered it for me but he didn't seem to think it mattered. Thing is I can't exactly have a sandwich and go have a blood test because I'm bf DS so when will I ever be able to eat gluten and have a blood test?

I'm DYING to trial those organic local free range eggs that are sitting in the fridge for DH to eat. I got them from our Saturday farmer's market. Thing is there is no way I will knowingly trial something whilst DS is downQ like this. I was waiting to hear back from the RAST results too but seem now I will also be waiting for the virus to clear fully.

I did write out the pros and cons of breastfeeding and did some more online researching etc. It totally shocked me to see how small the pros were compared to all the cons. I'm hanging on to the breast is best mentality like a mad woman, but I can see how it is not the end of the world if he was on something else that works for him. What that something is is totally up for debate and I am forever having an internal debate about that. My mummy instincts tell me that he could definitely use some more of something and have a break from whatever it is my breast milk is doing to him.

Elemental formulas - they are loaded with rubbish this I know, and I will only use them if I had no other choice to honest. My choices are limited right now though. I want to eat myself well right now but can't. I was waiting to see if I needed to modify my diet for life due to celiacs but I can't test that right now either because I can't get gluten into my system due to bfing. I would make my own formula but he may be allergic to dairy. I have a theory about the dairy issue but I'll wait for another post before I go into it.

Okay, I will mull on this some more...

xxx

[changingseasons]

Unfortunately, that is true about the celiac test. You have to be eating gluten daily for weeks before having the test done. Enterolab has a stool test that checks for celiac (although most doctors probably won't take that as conclusive proof), and you just have to have eaten gluten within a year or two.

Formula can help sometimes..... but it doesn't always work, so you need to keep that in mind. Even elemental formulas contain allergen derivatives, like corn, coconut, sunflower, etc. If a baby is sensitive enough, they can react to an elemental formula, and then you have to figure out how to get them back on the breast (and hope your milk hasn't dried up) or keep trying different brands of formulas, hoping that one works. I don't want to sound like a downer or formula-basher, but I do know that they don't work for everyone. (And in case you're curious how I know , I ate nothign and drank an elemental formula for 2 weeks and continued to breastfeed my DD.... initially she seemed better, but soon she started reacting to it- through my breastmilk. )

[mama9]

Originally Posted by changingseasons

Unfortunately, that is true about the celiac test. You have to be eating gluten daily for weeks before having the test done. Enterolab has a stool test that checks for celiac (although most doctors probably won't take that as conclusive proof), and you just have to have eaten gluten within a year or two.

First, congratulations for your pregnancy! Thanks so much for your reply. What a shame that my celiac test will be invalid. I will just go look up Enterolab to see if they do overseas...I can't find any info so I may call or email them to ask. I also discovered that here in the UK there is a home test now available to diagnose celiac that costs 20 quid. It's supposed to be quite accurate but like the regular blood test, it won't work well on a gluten free diet.

About the formula, that's okay, you don't sound like you are formula bashing at all, you sound like you are being objective and helpful, thanks for that. I do know that my baby is very sensitive indeed. I am really not keen on trying him on elementals for this reason. I don't know still if he is really corn sensitive because there was butter on the corn and I still have to trial it but haven't because it is not worth it nutritionally right now, in case he is reactive to it - not worth the pain it will cause. So, I am treating things as if he 'is' corn sensitive for now. I am amazed at the two week test that you did and that your little one still reacted to it. That says a lot about how elementals are great for some but not an answer for others.

My fear is drying up whilst pumping as back up and to keep my milk going during a formula trial also. I would of course need to keep all allergens out of my diet and milk during his trials, if I go this route.

He seems to be reacting to one or more of our limited safe foods right now, through the thick of his virus too. I just don't know how I can figure out what one it is. He'll be a year old before I figure this out I'm sure! I'm too scared to trial dairy again any time soon on him so that rules out homemade dairy formula I guess. I don't know about the meat based formula but milk or meat, if it's homemade I will need to trial all of the individual ingredients so it's a long way down the road if I was to choose that route too. It is hard enough just trying to get one new food in iykwim.

DS is cranky tonight and I am so tired so I think I will go join him and sleep.

Thanks again!! xxxxxxx

[mama9]

p.s. another reason why I don't want to try the elementals is because I can't trial all of the individual ingredients. Feeling stuck between a rock and a hard place right now xxx

[changingseasons]

It is hard. We're still figuring out DD's diet, and she's almost 3yo! (although we have it down for the most part, it's just failure after failure when we try to introduce more foods.)

[mama9]

Thank you for the sorely needed hug changingseasons. You mamas are so wonderful, with your own problems to deal with, your little one's and their food issues, whilst helping us on the boards to help ourselves and our own little ones. Thanks so much for your support and time Your little ones are so lucky to have you all as mamas xxxx

[mama9]

Okay, I'm getting there slowly...

I went through my thread again and I searched online all night....found myself some supps...I ordered probiotics for myself and probiotics for babe...got myself some b complex and trace minerals...also digestive enzymes.

I will go slowly on it all to monitor DS.

Just spent beyond what I can afford but I'm praying it will help.

The trace mins has magnesium but I am currently not taking any calcium supps. I've been relying on the bone broth but I wonder if I should supp with the cal too as I'm not eating dairy. Will have a think about it.

I was totally forced to trial other foods today and more than one unfortunately. DS has been reacting to all of our safe foods and I had to practically scrap our diet. It's like starting all over again but I'm really, really, really thinking that most of his issues are enzyme/digestion related because there is such a strong commonality between what he can't deal with - they are usually very starchy, sugary or fatty.

His RAST came back today all NEGATIVE for a whole range of foods - a long list. I asked the allergist's secretary and she said it was all tested for IGE and she couldn't see any results for IGG, so I'm waiting to hear back from the allergist. I knew it didn't I.

I haven't heard back from my celiac test. I reckon that will fail as I am gluten free. Still need to email that lab to ask if I can ship my doo doo across the pond for a celiac test. I wonder if fedex would require extra insurance for that sorry, gotta make myself laugh sometimes