Very sad to stop bf but think I have to

[mama9]

Hi All,

I started a thread a while ago about my DS's issues and progress. I'll post a link here if you want any background info on what we've been going through. I started this new thread as this is a new situation/decision that's come up.

I've been eating a grain free, dairy free, soy free, egg free, nut free diet with some limitations on the kinds of fruits, veggies and meats I can have, in order to breast feed my son. He's 6 months old in a week from now.

Without grains he is a different baby - SO much better. He has a bowel movement twice a day instead of once every two days. It looks normal too. I can have some white rice every few days or so and brown rice is a no.

He is eating butternut sQuash and zucchini - please excuse my capital Q's as DS peed on my keyboard and my keys are all messed up lol - ECing is fun . Those solids are going well for him and he loves to eat those.

He also looks great and is thriving.

So what is my problem? I feel ill, I have no energy and I'm not fully functioning. I have always done well with grains and after one month without grains I'm just getting worse. The thing that tipped me over the edge was the result of my cervical smear test this week. First time I've ever had abnormal cells. I know intuitively that I'm run down from the pregnancy, the breastfeeding on a restricted diet, etc. At my last kinesiology session the practitioner tested me on my own milk and concluded that it is very hard on my body to make milk but very good for my son. Neocate tested weak on him. He also detected a problem with my pituitary gland which is giving me hypothyroidism - something I've always suspected.

We had an appointment with his very good ped today and she supports my decision to continue bf but is very concerned for my health although I didn't tell her about my cervical issue. She said one thing that caused me and DH to rethink our decision - that as she suspects DS of having multiple food allergies and I as am continuing to bf, I could be unknowingly exposing him to some allergen that is keeping his immune system overly sensitised for too long and that could cause even more issues along the way.

I don't know if he still has a dairy issue - grains are still a big problem, but if it isn't an issue anymore I will make my own formula with raw milk and take the recipe to our kinesiologist to test each ingredient. If it's all good I would rather feed him with that.

Please chime in with your thoughts, ideas and experiences and thanks so much. xxxx

[kittywitty]

I've also gone forever on restricted diets with my kids.

Sometimes it does get better and some parts do go away. Is there any way you can be tested for allergies? It could be the restricted diet, but I also know a lot of people who feel the same way you do when they go off of gluten if they are allergic to it or have Celiacs. It takes awhile to get out of your system and then they feel better once it's through. It might be worth testing to see.

[mama9]

Originally Posted by kittywitty

I've also gone forever on restricted diets with my kids.

Sometimes it does get better and some parts do go away. Is there any way you can be tested for allergies? It could be the restricted diet, but I also know a lot of people who feel the same way you do when they go off of gluten if they are allergic to it or have Celiacs. It takes awhile to get out of your system and then they feel better once it's through. It might be worth testing to see.

Hi Kittywitty, thank you so much for your input and I really needed that hug too

That is very interesting what you said. The kinesiologist did say to me that I don't tolerate English wheat very well as it's heavy on the gluten but can handle Italian wheat, French wheat, German wheat... I want to get myself tested again to double check - is there a special way to test for this? I gluten intolerance or celiacs something that could be hereditary?

Thanks again xxx

[dannic]

Celiacs is genetic, so yes, it can be hereditary. Gluten intolerance can be too...we used enterolabs for our celiacs/gluten intolerance testing. I would think that if one form of gluten bothers you, all forms would.

It's true that if you have a leaky gut, some of your son's issues could be from that. The flip side is true as well--your son could get worse after you quit. My dd was 18 mos old when we quit bfing because I was pregnant and her cascade of problems got much worse afterwards--tho it wasn't until afterwards that we figured out that it was food intolerances causing them!

All that said, your health is important too because it takes energy to care for and seek answers for your children.

Another idea would be to give him something else for a week or two while pumping to see how he does...

GL! It's so difficult making these types of decisions!

[mamafish9]

What are you eating? It sounds to me like you need more starches and fats - can he tolerate you having coconut milk/oil, sweet potatoes? Did you find any good vitamins (liquid vitamins might be a choice, they don't have the rice fillers). Also, do you have compounding pharmacies in the UK? They can mix up whatever you want, with any ingredients left out that you need.

I support whatever choice you need to make for your health, but I'd be concerned about your son on either neocate (corn based = grain) or homemade dairy formula if he's sensitive to dairy. If he's not sensitive to dairy, then you could add butter, another great fat source for your diet.

So first I'd try adding things to your diet. You could also trial him on a bit of formula, so that you have an idea of how he'd react, before you make any final decisions.

You might also trial more grains - I know rice and millet don't work. Have you tried sorghum, buckwheat, etc? Also, coconut milk & oil are great if he tolerates, and you can bake with coconut flour. I just made some coconut zucchini muffins for my son, they're quite good and might satisfy some of what your body needs.

I have huge empathy - I do best on a mostly vegetarian diet, lots of grains and veggies, and my son is a carnivore and was reacting to most grains & veggies. It's hard to eat what doesn't feel right for your body! However, you're also only a month in to the hardcore restrictions - and that's about at the point where it did start to get easier for us, as I found some things that did work to add back in, and figured out how to satisfy myself better on the things I could eat. Good mineral & vitamin support is also essential - nutrient deficiencies can trigger all kinds of problems for you, and make you feel really depleted.

[mama9]

Originally Posted by dannic

Celiacs is genetic, so yes, it can be hereditary. Gluten intolerance can be too...we used enterolabs for our celiacs/gluten intolerance testing. I would think that if one form of gluten bothers you, all forms would.

It's true that if you have a leaky gut, some of your son's issues could be from that. The flip side is true as well--your son could get worse after you quit. My dd was 18 mos old when we quit bfing because I was pregnant and her cascade of problems got much worse afterwards--tho it wasn't until afterwards that we figured out that it was food intolerances causing them!

All that said, your health is important too because it takes energy to care for and seek answers for your children.

Another idea would be to give him something else for a week or two while pumping to see how he does...

GL! It's so difficult making these types of decisions!

Thanks so much Dannic for sharing. I was very concerned about the possibility of DS getting worse after Quitting. I had insight today, even though he is my first baby, that Quitting is definitely not going to necessarily solve his problems and that we could end up with a whole batch of new ones. From what you are saying, I must be right about that possibility.

I haven't tried any probiotics yet, so this is another thing that could help save our bfing. Our kinesiologist was going to prescribe us some at our next session after some healing has happened within the gut first - he's on holiday at the moment though. Perhaps whilst I am waiting for him to return from his hols, I can try a test where I make myself some homemade raw yogurt and things like kefir. I don't know much about kefir, etc, so I will read up on those. DS may even do better on the raw dairy versus pasturised. This is another possibility I haven't tried yet.

All of the results I have stumbled across led me to discover traditional foods so naturally I have been thinking about trialling fermented, soaked, sprouted grains/lentils to eat in various forms such as homemade flour to bake my own bread, etc, but if we both have a possible gluten issue then would it be true to say that no amount of 'traditional treatment' would help us? Would it be possible that if we didn't have a true gluten issue and it was just the leaky gut giving us the appearance of gluten issues, then these treatments could be useful to us?

Sorry for the tons of Questions....

My brain is a bit frazzled and I may have missed things out to ask you but I'll post as things come to mind. Thanks again xxx

[mama9]

Originally Posted by mamafish9

What are you eating? It sounds to me like you need more starches and fats - can he tolerate you having coconut milk/oil, sweet potatoes?

Thanks so much mamafish9 for your input here. I'm eating bone broth, lamb, sQuash and zucchini, shiitake mushrooms, onions, olive oil, natural salt, red peppers, lettuces, cucumber, tomatoes, corriander, strawberries, kiwi, blueberries, garlic, chicken, white rice every few days but it does disturb his bowel pattern. I can't remember what else at this moment. I tried coconut milk but there is always some kind of reaction - I'm not totally clear on this but I've never eaten it without something going on afterward. Haven't tried coconut oil and will order some this week. He can't do any potatoes at all. I'm getting most of my fats though lamb, chicken and olive oil - I have been taking green pastures cod liver oil with high vitamin butter oil. It is a big risk as it has the dairy but I'm going on the notion that it is raw and may pass for him. I tried salmon once and he had blood in his poop but this time I tried wild salmon and so far no blood. It could be the pink dye that I learned recently they add to farmed salmon. I've been reading Nina Planck's book, 'Real Food' which lead me to try the wild stuff. I was a new woman this morning after eating it last night. Must have needed something in it - could be the omega 3.

Originally Posted by mamafish9

Did you find any good vitamins (liquid vitamins might be a choice, they don't have the rice fillers).

After reading Nina's book, I held off on the vit/min supps, especially since DS reacts to some of them that I have tried. I am trying to get them mostly from foods and by trying to add more foods. Saying that I am taking some vits in the supps from our kinesiologist. I never thought about the liQuids - such a great idea.

Originally Posted by mamafish9

Also, do you have compounding pharmacies in the UK? They can mix up whatever you want, with any ingredients left out that you need.

Never heard of that before but have now - thanks to you. I will look into this once I'm ready to go ahead with supps, etc.

Originally Posted by mamafish9

I support whatever choice you need to make for your health, but I'd be concerned about your son on either neocate (corn based = grain) or homemade dairy formula if he's sensitive to dairy. If he's not sensitive to dairy, then you could add butter, another great fat source for your diet.

Yes, I would not use the Neocate if we go down the elemental formula route as I am weary of it due to the corn and due to the weak testing result. The homemade dairy formula frightens me due to the possible dairy issue. I believe it may take him over two weeks to show up with dairy reactions but then again I was eating gluten at the time so I have never trialled dairy without the gluten. Also as you say, if he's okay with dairy then I could just add things like butter to my diet to get good fats in there.

Originally Posted by mamafish9

So first I'd try adding things to your diet. You could also trial him on a bit of formula, so that you have an idea of how he'd react, before you make any final decisions.

I'm with you on that - thank you for the reassurance mamafish9. Which formula are you thinking - the elemental or the homemade? And if/when I trial the homemade, would goats milk be a better option? I was thinking to trial the homemade first by breaking down each ingredient and getting each one tested with the kinesiologist, as well as testing him directly if it passes those tests. It could take a while to see a reaction so it's hard to know but I could even hold off until I've tried some probiotics so that our guts are at least in better shape first. What do you think?

As for adding things back to my diet, I'm tempted to have a go at eggs as I've been egg free for a few months now. I think though I may start with dairy - well, I have already I guess, as I'm currently taking the fclo/hvbo.

Originally Posted by mamafish9

You might also trial more grains - I know rice and millet don't work. Have you tried sorghum, buckwheat, etc? Also, coconut milk & oil are great if he tolerates, and you can bake with coconut flour. I just made some coconut zucchini muffins for my son, they're quite good and might satisfy some of what your body needs.

Buckwheat doesn't work but I haven't heard of sorghum, I'll look that up. Will have to retry the coconut milk/oil/flour as I'm suspicious of coconut. Your muffins sound divine and if the coconut works I'd love your recipe

Originally Posted by mamafish9

I have huge empathy - I do best on a mostly vegetarian diet, lots of grains and veggies, and my son is a carnivore and was reacting to most grains & veggies. It's hard to eat what doesn't feel right for your body! However, you're also only a month in to the hardcore restrictions - and that's about at the point where it did start to get easier for us, as I found some things that did work to add back in, and figured out how to satisfy myself better on the things I could eat. Good mineral & vitamin support is also essential - nutrient deficiencies can trigger all kinds of problems for you, and make you feel really depleted.

Yes, it's like DS is my polar opposite when it comes to food. And with my current health scare, I am terrified that I don't have enough time to get myself back to health. My body needs me right now and I need to get back on form so that I see good results for my next cervical smear. Who knows if my pituitary issue is making it hard for me to make this milk for him and I'm run down from just bfing and the diet isn't even the main issue. So much is possible and I'm scared that I am not helping myself. If it weren't for that, I wouldn't hesitate about continuing to bf. If I can, I will pass this one-month sticking point, get some supplementation and try to add stuff back in whilst keeping my milk in good order for DS. I'm just so scared about my abnormal cells in my cervix. xxx

[mamafish9]

First off, take a deep, deep breath about the abnormal cervical cells. They are common, often misdiagnosed, and can be resolved quite easily if necessary. I know it's really scary, but it's something that happens quite often after pregnancy - it may have nothing to do with your current food issues.

Second, ferments are a great idea to try. I'd try fermented raw goat's milk first if you can - when my son wasn't tolerating any dairy, that was the first thing he could handle, and it was very good for him. I'd do it for you, see how that goes for your son. Then you might trial a very few drops of it with him, and see how he reacts. You seem to get quite quick reactions, so I'd be surprised if it takes days/weeks to see a dairy reaction. The other way to trial dairy might be adding butter to your diet, and see how that goes - buy grassfed butter if you can, or get raw cream and make your own (you can culture that as well). If salmon made you feel far better, then you may just need more fat, and butter is a wonderfully tasty source of that.

When you've trialed coconut milk in the past, has it been PLAIN coconut milk? Many coconut milk cans here have preservatives or thickeners in them, and those often cause issues.

I'm a big fan of traditional foods - AND supps. If you have any nutrient deficiencies, or your son does, addressing those through foods, especially on a really limited diet, will be exceedingly difficult. Even more difficult if either of you have any digestive issues (which means that no matter how high quality the food you eat is, you can't always absorb the nutrients from the food). The first thing I would look for is a good trace minerals supplement & a B vitamin - maybe get one from the compounding pharmacy so there are no fillers.

[mama9]

p.s. I could trial him on some amaranth?

[kittywitty]

Sounds like some good advice. I don't know about amaranth, but I would be wary of coconut oil. I have mild reactions to coconut milk and oil and the two seem to go hand in hand in my family for reactions.

[mama9]

Originally Posted by mamafish9

First off, take a deep, deep breath about the abnormal cervical cells. They are common, often misdiagnosed, and can be resolved quite easily if necessary. I know it's really scary, but it's something that happens quite often after pregnancy - it may have nothing to do with your current food issues.

Second, ferments are a great idea to try. I'd try fermented raw goat's milk first if you can - when my son wasn't tolerating any dairy, that was the first thing he could handle, and it was very good for him. I'd do it for you, see how that goes for your son. Then you might trial a very few drops of it with him, and see how he reacts. You seem to get quite quick reactions, so I'd be surprised if it takes days/weeks to see a dairy reaction. The other way to trial dairy might be adding butter to your diet, and see how that goes - buy grassfed butter if you can, or get raw cream and make your own (you can culture that as well). If salmon made you feel far better, then you may just need more fat, and butter is a wonderfully tasty source of that.

When you've trialed coconut milk in the past, has it been PLAIN coconut milk? Many coconut milk cans here have preservatives or thickeners in them, and those often cause issues.

I'm a big fan of traditional foods - AND supps. If you have any nutrient deficiencies, or your son does, addressing those through foods, especially on a really limited diet, will be exceedingly difficult. Even more difficult if either of you have any digestive issues (which means that no matter how high quality the food you eat is, you can't always absorb the nutrients from the food). The first thing I would look for is a good trace minerals supplement & a B vitamin - maybe get one from the compounding pharmacy so there are no fillers.

I didn't see this post when I posted about amaranth - thanks mamafish9. I will chill out about the cervix issue and it can only do me some good to stop fretting about it so much.

I was just having a chat with DH and we both thought that goats milk ferments was a good way to start, so it's also great that you seconded that one for us. I will buy some raw grass-fed butter/cream to make butter, whatever I can find at this weekend's farmer's market. I have a feeling butter will be fine as I am taking it in small but concentrated amounts with my fermented COL and he seems okay so far with that. I love butter so much - it's the Cornish blood in me.

I trialled him on plain coconut milk after I realised that the previous cans had stuff added to it. I can't be sure he reacted to it or not because there were other things I ate that were new and probably didn't give him enough time in between to see what was going on. I will try and get an even more reliable source of coconut milk and try again.

I will look into those pharmacies and at least supplement whilst we are healing our guts and on limited diets. It makes total sense what you are saying. THANK YOU SO MUCH xxxx

[mama9]

Originally Posted by kittywitty

Sounds like some good advice. I don't know about amaranth, but I would be wary of coconut oil. I have mild reactions to coconut milk and oil and the two seem to go hand in hand in my family for reactions.

I will have to wait until DS is pretty clear from his recent flare up where I ate something out of desperation from a terrible blood sugar drop whilst I was out shopping. There were too many ingredients in this cake that I ate so I can't tell what it was that bothered him. Today is his first almost 100% calm day so if I keep things steady and solid from now I should be able to trial him on coconut milk and oil soon. Thing is I need to streamline all of my trialling so I can see what works and what doesn't. I think the priority here are the fats. I may need those first, and the probiotics, so perhaps raw butter and fermented goats milk may be my first two attempts - butter first, fgm second perhaps.

[mamafish9]

Yes, I'd prioritize fats - and eat a ton of it - I fried EVERYTHING while I was on the elimination diet. If salmon went well, also continue to eat plenty of that, it's full of wonderful fat (and I personally found it easier to stomach than other meat). Can you do avocado? Also a great source of fat, I mashed it into lots of foods. Hummus (make your own with chickpeas, olive oil, salt, if you can't do the other ingredients).

[kjbrown92]

Isn't one of the hallmarks of thyroid issues having no energy, feeling ill, etc.? So it's possible that if you get that back in line, then you may do well on the diet.

I also strongly encourage fats. I'm only dairy, gluten, soy, corn free but I put my foods into fitday.com for a couple of weeks and found I was eating 50-65% of my calories from fat each day. I fry lots of my kids stuff (zucchini fritters using chickpea flour, bacon, corned beef and sweet potato has fried in bacon grease, sweet potato fries, sweet potato pancakes, etc.).

[KimPM]

Have you been tested (kinesiologist or otherwise) for goat dairy if cow dairy doesn't work for either you or DS?

[changingseasons]

I haven't read all the posts, so I apologize if this was already covered.

You say he reacts to all grains- have you tried all the alternative grains (some of these aren't techically "grains" but rather seeds or roots):
- buckwheat
- quinoa
- teff
- amaranth
- sorghum
- tapioca (flour, for baking)
.... I'm sure I'm forgetting something. I just discovered that you can make bread with just tapioca flour! (I've been making chebe bread which has egg, but I'm sure there is something you could make with it without the egg.)

My DD only tolerated buckwheat for a long time (she's allergic now ), and now she only tolerates quinoa. It's worth experimenting with all the grains to see if you can find one that works. I've also tried grain free a few times, and just feel miserable.

[KimPM]

If coconut is okay, you can also use coconut flour, in combination with other alternative "flours" for baking.

And I've heard that abnormal pap smears can be helped with vitamin A. If you can't get it through food, use a supplement during this time...but don't overdose.

[mama9]

Originally Posted by mamafish9

Yes, I'd prioritize fats - and eat a ton of it - I fried EVERYTHING while I was on the elimination diet. If salmon went well, also continue to eat plenty of that, it's full of wonderful fat (and I personally found it easier to stomach than other meat). Can you do avocado? Also a great source of fat, I mashed it into lots of foods. Hummus (make your own with chickpeas, olive oil, salt, if you can't do the other ingredients).

Just managed to get back onto the computer...unfortunately, DS is having a flare up right now which is new and the only new things I've had are cooked red onion instead of yellow onion and the salmon that made me feel so good. I was thinking that the last time he flared up with blood in his poop was due to the salmon I had the first time but I wasn't completely sure. This time there is no blood but his gut is inflamed or something because his stool has thickened with mucous and he has a rash. He keeps on crying and itching himself and screaming through all of the itching. So I guess salmon is out again. Perhaps I can try sardines but I'm afraid to try any fish right now. I also found it so much easier to digest than other meat.

Can't do avocado. I love them and crave them but he always reacts badly to them. I'm mad for hummus but he reacts Quite badly to chickpeas - pooping water and what looks like undigested milk for days afterwards.

[mama9]

Originally Posted by kjbrown92

Isn't one of the hallmarks of thyroid issues having no energy, feeling ill, etc.? So it's possible that if you get that back in line, then you may do well on the diet.

I also strongly encourage fats. I'm only dairy, gluten, soy, corn free but I put my foods into fitday.com for a couple of weeks and found I was eating 50-65% of my calories from fat each day. I fry lots of my kids stuff (zucchini fritters using chickpea flour, bacon, corned beef and sweet potato has fried in bacon grease, sweet potato fries, sweet potato pancakes, etc.).

Right you have a good point there. I haven't felt great since the birth to be honest and the diet I'm on has just exasperated things, so the thyroid issue could be making the diet seem worse than what it is. I wish we could do sweet potato but can't. I am going to order that coconut oil and add it to my list of foods to trial after butter and homemade kefir from goats milk. Please wish us luck - I really want to make this work despite all of these food issues.

[mama9]

Originally Posted by KimPM

Have you been tested (kinesiologist or otherwise) for goat dairy if cow dairy doesn't work for either you or DS?

No, but I will bring some goat's milk along to my next session. Cow dairy is okay for me and I think he said it was not okay for DS due to his leaky gut. I did try a few teaspoons of goat's cheese a few weeks ago and didn't see any reaction so it could be that goat dairy is okay - I am praying.