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#61 of 99 Old 03-30-2013, 08:01 AM - Thread Starter
 
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I think so, but if it were acv, wouldn't the box say that? At any rate, he seems to be doing okay with the "matzo" so I am not too concerned but it would be nice to know.
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#62 of 99 Old 03-30-2013, 11:32 AM
 
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Here are possible answers about vinegar. If the package says gluten free, I would trust it. It's probably made from corn:

 

http://celiac-disease.com/is-vinegar-gluten-free/

 

http://www.heinzvinegar.com/faq.aspx


Created an instant family (7/89 and 5/91) in 1997. Made a baby boy 12/05 adopted a baby girl 8/08. Ask me about tandem adoptive nursing. Now living as gluten, dairy, cane sugar, and tomato free vegetarians. Homeschooling and loving it.

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#63 of 99 Old 03-30-2013, 12:48 PM
 
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In general, I don't trust anything.  I believe the new rules state that to be labeled "gluten free" it needs to be 20 ppm (parts per million) or less gluten containing.  For some people, that's fine.  For others, not so much.  This is one part of researching things that sucks.  You have to call every. damn. company. to try to get answers.  It's exhausting & the majority of the time I don't get the answers I need.  

 

Some people go package free because it's that hard.  Then others, like us, even being mostly package free (me & ds2 are anyway), still isn't always good enough.  Take the compostible black plastic mulch that is corn derived that our former CSA farm was using.  Called the company that developed it & they had not tested if any traces of corn got into the veggies that were grown through, in, on, around it.  So, on to a new CSA we went that did not use corn derived stuff.

 

I doubt you'll have as hard of a time as we do.  All this to say, I don't trust the labels.  "Gluten free" is trendy.  Probably gets people who don't need to buy it to buy it.  The only way to know what *that* company means by *that* label is to call them, unfortunately. 

 

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Sus


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#64 of 99 Old 03-30-2013, 12:56 PM
 
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Originally Posted by mama24-7 View Post
  All this to say, I don't trust the labels.  "Gluten free" is trendy.  Probably gets people who don't need to buy it to buy it.   

Im not sure who buys gluten free because its trendy. Why would you bother? More expensive, more inconvenient... I wish i didnt have to buy gluten free for my sons.  I wish i didnt hve to worry about whats going to happen next if one eats gluten at some birthdy pary or wherever else you may find gluten. I think there is a rising demand for gluten free because there is a growing awareness of the havoc it wreaks. 

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#65 of 99 Old 03-30-2013, 01:18 PM
 
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Some random things....

 

1. Just had a horrible thought.... The "gluten free" matzo I bought him (he likes crackers, but not the gluten free ones I found at Costco...) is made with "natural vinegar." Since it's labeled "gluten free" I have to assume that means NOT vinegar distilled from grain, correct? Anyone know what "natural vinegar" is?

 

What kind of gluten free matzo are you talking about? The only one i know of is oat matza which is horribly expensive. In any case, my son who reacts to gluten, also reacts to oats, so i made him teff matza (look up teff, its the best, i love teff!!!) In any case,  some people react to oat gluten too.   Im not sure what you mean about the vinegar, the matza i know of isnt made with vinegar. I dont know what natural vinegar is, natural WHAT vinegar....   

 

 

 

2. I gave him coconut yogurt from TJ's and then realized it doesn't specifically say that it's gluten free. He seemed to have a digestive reaction to it, so I stopped giving it to him. Then today, I read somewhere else that coconut tends to be good for loosening things up and helping with constipation. Hard to know which is the real problem....

 

If the ingredients dont mention gluten containing products, then it is most likely gluten free. However, if he is celiac, then even minimal contact with gluten containing ingredients might give him a reaction.(ie coconut processed in the same facility as wheat) More often than not, people with one kind of intolerance, have other intolerances because of the state of gut health.... 

 

3. I'm afraid to keep giving him probiotics this young if it's going to have that effect on him. I'm afraid he'll get dehydrated or something.... I guess a naturopath would be a good source of info as to how to safely deal with the transition? I'm not sure how well-versed his ped is....

 

Probiotics are good at any age.  Babies receive  probiotics in breastmilk.  Be careful of any 'die-off' reactions as some others here have mentioned. But he may not have any. My kids get probiotics, but i have not noticed any die off yet... (google GAPS)...sorry if i  am repeating anything, i havent read everything upthread....be sure to give him a glass of water with the supplement

You can get  probiotics  in  many different fermented foods. I am currently trying to increase our intake of fermented foods, and adding them  into  one of our compulsory food groups-we try to include miso soup, sauerkraut, sour cream, yoghurt, and kefir,  pickles, and others  ( get the kind without additives, made with organics products etc) 

A naturpath would be a good idea, the ped might not know much, but you never know

 

4. I love his ped. She specializes in drug-exposed infants. But she believes in vaxing and likely would not agree that the vaxes could be harmful to him. It can't hurt to ask, but I'm guessing that even if she did agree, a letter from her might not be enough for the state to agree to let his vaxes go. Rules are rules, you know. She is, however, completely open to writing referrals to any specialist I want. So far, we have GI and ENT follow ups and she agreed to a sleep study if we continue to have problems that aren't fixed by either of those two specialists. His neurologist wasn't impressed by his "issues" and said that "for his situation" he is doing just fine. When we were there, I didn't have enough experience with him  to know to question all these things.

 

There is a homeopathic remedy  a child can take to minimize potential vaccine damage to the immune system. You could also ask the ped to have the child tested for gut dysbiosis-or digestive issues that would predispose him to adverse vaccine reactions (as per GAPS recommendation) In fact, a  visit to the homeopath could be very helpful.

 

 

 

5. Mama24-7, thanks for the reminder of the ugly things that happen during a cleanse. I'm not so sure it's a good idea for him, but I'd love to find a safe way to clean his system up! And I hope your LO feels better soon.

 

You could lower the doses and have him build up to it gradually so his reactions are minimized....

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#66 of 99 Old 03-30-2013, 07:11 PM - Thread Starter
 
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The GF matzo is Yehuda brand. It's made with potato flour and starch and tapioca starch, and then there's expeller pressed palm oil, eggs, honey, salt and "natural vinegar" also listed as ingredients. (Thanks for the vinegar-related links, Sunday.)

 

He's been doing great digestively, only had one bad night on Thursday, but this afternoon his butt turned bright red and now he's fussy. So the pattern begins again: Bad sleep, two days later a bright red butt, and tomorrow, rancid, stinky messy poop several times a day. :(

 

I have no idea what I gave him, if anything. We did eat at my parents' today and my mom was not "celiac careful" as I call it, with her fork and a slice of cheese. I can't imagine that he is that level of sensitive since this seems to be a cyclical thing with him that runs over the course of a week or two weeks at a time. I'm definitely not "celiac careful" at home -- I'll make the older boys sandwiches on the cutting board and then slice up a veggie or some fruit for the baby and there's no reaction. I don't purposely cross-contaminate, but I guess I do passively, since I haven't decontaminated the kitchen yet. It has always been cyclical like this, even when I was giving him gluten and dairy at the beginning.

 

Thanks for all the support and info, everyone! The mystery continues...

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#67 of 99 Old 03-31-2013, 07:51 AM - Thread Starter
 
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3 AM: All crying, no happy noises, so I got up with him. He was trying SO hard to fall back asleep and just couldn't get comfortable. I have no idea what the problem was: tummy ache, diaper rash, congestion/start of an ear infection (which he's prone to), or all/none of the above.... Gave him Motrin and he woke up happy.

 

Woke up, that is, after he finally fell asleep at nearly 5 AM. So the usual two hours again. Can't wait to see what the diapers are like today! I may just keep him in disposables for my own sanity. :|

 

Hope everyone (who celebrates it) has a wonderful Easter!

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#68 of 99 Old 04-02-2013, 01:06 PM
 
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Maybe I'll mention this, I didn't feel comfortable putting this out there because people never believe me when I tell them (they look at me like I'm stupid). But I'll share in case it helps your boy.

 

Summary, if you don't have much time to read:

  • please stop all processed foods, even gluten free alternatives. (They are overly processed and not carefully prepared so they also hurt the intestines)
  • try chicken or beef broth twice per day (or as much as he will drink) to heal his intestines

 

 

I wasn't always intolerant to gluten. Growing up we had our own fields with corn, wheat, barley, and so on. I ate lots of sour-dough bread everyday! I ate fresh pasta (we made it at home ourselves), and corn bread with fish.

 

But these foods were prepared differently than the stuff you buy at the store.

The grains were fresh. The dough was leavened (fermented) by natural bacteria, or in some cases, soaked with water and vinegar or soured milk before being cooked. This made it so it was easy to digest.

Nowadays, grains aren't prepared carefully like that anymore. It explains why I can't eat bread from the store, but I can eat sourdough bread made by a farmer.

 

After I moved out of my parents and went to college I started eating like everyone else. That's when I started, little by little, having trouble with food.

 

Eventually I became intolerant to a lot of foods. My gut was so damaged, that a lot of other foods started causing trouble. Potatoes, apples, tomatoes, spinach, all nuts but specially peanuts. Not only that, other grains were bothering me too. Corn, barley, oats... and then I became intolerant to milk too! There were a lot more foods, but those are the ones I can remember.

 

Those foods were not the problem, but because my intestines were so damaged, other foods started causing problems too.

 

After eating one or two cups of chicken and beef broth everyday, I can eat these foods again. (the homemade broth gelatin healed my intestines). See if you can make it at home, I stick the bones in the crockpot on high before going to bed and in the morning it's ready. It lasts all week in the fridge in a glass jar. Broth would be a good alternative to milk since it has a lot of calcium and other nutrients.

 

I was lucky that I only started having problems around college. I feel so bad for this little one who has to deal with it so young!

Don't give up, this can be cured!

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#69 of 99 Old 04-02-2013, 01:12 PM
 
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To prevent damage to the intestines and reverting to how sick I was before, I need to eat traditionally prepared grains like fresh sourdough instead of the kind of bread you'd find at the grocery store.

The ingredients should be: flour, water, salt. Nothing more, nothing less.

 

Let me tell you a great example that will make you see how big a deal this is:

  • I can eat one huge loaf of sourdough in the morning all by myself, and I feel no gluten intolerance symptoms. None at all. Not one symptom!
  • I could eat one slice of store-bought bread... it feels like I have a brick on my stomach, and I get all the gluten-intolerance symptoms for days. The ones I hate the most is, TMI, I go from skinny to looking 9 months pregnant; and I have diarrhea for days.

 

Matzo is not leavened, so it would make my problem worse. You want the grains to be fermented/pre-digested by bacteria so they're easier to digest for us. Also that matzo is made from overly processed potato and tapioca (it's not real matzo anyway), which irritates the intestines.

 

Tapioca is ok. Potatoes are ok. Rice is ok. Corn is ok. But when the food industry processes them into flour, they become overly-processed and damaged, which is not ok. Fresh soaked corn bread gives me no problems, but corn chips from the store make me double over in pain. I can eat plain white rice. But Rice Chex make me feel pain. I can eat potatoes, but using potato starch in recipes makes me sick.

 

Yesterday I was given some gluten free cookies. I hadn't had chicken broth for a while, because I ran out of bones. I ate 3 cookies, they were simple chocolate chip cookies. I went to bed around 10 PM, and I couldn't sleep until 5 AM. That's how bad I was :( I went to sleep on the couch because I kept tossing and turning and waking my husband.

 

I know this whole situation must be so difficult for your family, I promise it gets easier! It's a lot easier to just eat meat, fish, eggs, and vegetables and fruits, than to deal with this stuff!

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#70 of 99 Old 04-03-2013, 07:35 AM
 
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Was GAPS (gut and psychology syndrome) mentioned upthread?  Yes, i agree, he needs to heal his intestines, and gluten free  is only a temporary answer. I intend, my child to go on GAPS for full healing. Im sorry if i repeated anything.

 

Wow about the potato based matza, i havent found that where i am. I cant think why. Alright, not kosher for the seder table (apparently you are obligated to take at least a bite of the wheat or oat stuff), but the potato matza sounds so much better for the week, not to mention in general. Im jealous you found it!

 

My kids couldnt have matza this Passover.

 

Btw, we have also been soaking our grains (non gluten grains) for our breakfast, but i know we will have to phase out of that soon too, in favor of  a starch free alternative for GAPS.

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#71 of 99 Old 04-03-2013, 12:37 PM - Thread Starter
 
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Thanks for all the info Eloise. Yes, we do nearly 90% whole foods as it is. The only processed stuff I do is flour/sugar for cooking, cereal for the kids and DH in the morning (not the baby anymore), pasta (was using rice pasta for baby, but not anymore), bread (for DH and big boys only) and probably a few other things I'm not thinking of. But the baby doesn't get any of it, except for the matzo (gluten free version) and a pizza crust made from a GF/CF mix (Chebe). Oh, and he eats sunflower seed butter, which I buy, I don't make from scratch, but it only has sunflower seeds and cane juice in it. The processed things I do buy only have whole ingredients, no chemicals/additives/etc.

 

We went to the GI doc yesterday. He wants bloodwork, a stool test (only if the rancid poop comes back), and an upper GI done. Poor baby. The doctor was very thorough and really listened. The only thing that made me pause was his dismissal of "sensory issues" as they relate to diet. He said "that neuro stuff is all voodoo to me" and wanted to just stick with the symptoms and the possible causes of his digestive issues. I get that, he's a GI specialist, not a neuro or a generalist. So if we can solve the GI issue, I'm betting the neuro stuff will also follow, b/c whatever's bothering his stomach is probably causing neuro issues. He did agree that baby should be off ALL dairy, not just milk, and hopefully we'll find some answers.

 

Meanwhile, he's been grumpy/sensitive for the past day or so, and was up at 430 this morning. I'd be grumpy too, if I wasn't eating half as much as I used to! He's getting picky and I don't know what to do. He actually managed to choke down his egg this morning b/c he was so hungry. At lunch, he skipped his potato and roasted eggplant but ate the butternut squash with coconut oil. I'm trying to give him potatoes since he's not eating any other starches right now, but it's hit or miss, and so is the eggplant. Sweet is in, I guess. Oh, and that makes it even harder b/c the doc wants a follow up in 3 weeks and said to "limit" fruit and fruit juice. Okayyyy.... So what's left for this kid to eat??? Veggies, beans, nut butters, meats. (Oh, and he does NOT like broth BTW -- I was so excited to give him some last week when he was stuffy b/c the last batch I made was amazing... nope. Wouldn't touch it. Maybe if I add sugar... LOL)

 

This is becoming more about nutrition and sensory issues than about my OP, so maybe I should start a new thread in Nutrition? Would more people see it there? Of course, by next month it'll be an ear/nose/throat issue when we see the ENT... who will probably refer us for more allergy testing....

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#72 of 99 Old 04-03-2013, 08:47 PM
 
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(OOPS! Sorry this came out so long!)

 

Summary:

  • ALL nuts, seeds, beans, and grains need to be soaked or fermented so they're easy to digest and so they don't damage the intestines. He might even be able to eat gluten, like I can now, so long as it's properly prepared.
  • "Whole ingredients" doesn't mean anything, what matters is how those ingredients are prepared!
  • Cook your vegetables with broth instead of water, re-heat meat with broth. He doesn't have to drink it plain. Broth is very important to heal food allergies (by repairing damaged intestines), try to sneak it in his food as much as you possibly can.
  • Use all your pan drippings to stir-fry or roast vegetables. Chopped potatoes cooked like this are really yummy, and so are chopped carrots boiled in broth, then stir-fried  :)
  • Use plenty of salt, don't skimp!
  • Give him fattier cuts of meat like chuck beef, pork butt, and chicken thighs instead of lean meats like london broil, dry pork chops, or chicken breast. They'll provide more nutrients and calories, and keep him full longer.
  • Don't be afraid to give him lots of sweet potatoes and butternut squash, since he likes them! It's good for him :)

 

(All these things, further summarized: traditional cuisine is delicious and will make your family feel like royalty!)

 

 

 

Neuro stuff is not voodoo. I spent almost a decade nearly disabled with loss of sensitivity in my feet and hands, numbness, severe brain fog (it was dangerous to use kitchen appliances unsupervised), burning/prickling feeling on my skin (mostly arms and feet), severe sensitivity to sound and light, couldn't move my fingers and my left knee after I woke up (had to wait a few hours before I could use my hands). I couldn't take showers unsupervised because I was too clumsy. I often fell (everywhere) and couldn't get up without help. I couldn't go outside without someone guiding me. I had tremors on my whole body, but mostly in my hands. My husband couldn't caress me at night, because it felt like torture! I wore all my clothes inside out because the seams and the fabric felt so painful I would have anger and crying outbursts. Speaking of that, I cried all the time. Cried at commercials (even funny/upbeat commercials), cried in the morning, cried if my routine/plans changed, cried so much at night I couldn't sleep. I cried for no reason. Everything made me cry, even if it were something good! And I acted like a... don't want to say that word here ;) It means "mean girl" and rhymes with "witch" :P

 

If that went away in less than one week when my diet changed... how can that not be related to diet?! But I know, this is the internet, no one will believe me anyway. I only started that diet by accident, if someone had told me that diet could make me healthier, I admit wouldn't have believed them either!

 

If you met me today, you would never know I used to be so sick. I feel so sorry for that doctor's patients, who will continue suffering :(

 

 

 a pizza crust made from a GF/CF mix (Chebe).

Would you consider buying sourdough bread and using a slice of that as a pizza crust? Oh wait... wait, wait a second! Sour dough can be used to make pizza crust too, now that I think about it! In fact, I think my grocery store sells bags of uncooked sourdough pizza crust! Oh my, I can't believe I just realized this, now I'm going to make pizza every week! I'm so excited!

Remember, the ingredients need to be: flour, salt, water. Nothing else. The flour/gluten needs to be fermented by bacteria, that's what makes it easy to digest even for someone like me... that's why I didn't have any problems with gluten/grains growing up, until I started eating modern bread.

 

(OMG... I can't believe I over-looked sourdough pizza dough! You bet I'm going to make pizza every week now! I'm so happy! I'm going to be able to eat pizza without getting sick! O-M-G!)

 

 

Oh, and he eats sunflower seed butter

Seeds cause the same problems that grains and nuts do. They have phytic acid which damages the intestines and makes digestion difficult.  More on that later.

 

 

The processed things I do buy only have whole ingredients, no chemicals/additives/etc.

Just because it's whole ingredients, it's doesn't mean it's good. Remember what I said about traditionally prepared bread? Modern bread and traditional sourdough bread have pretty much the same ingredients. But traditional sourdough bread has bacteria fermenting the gluten and essentially pre-digesting the food for you. It's akin to milk and yogurt. Have you ever heard of people who can't drink milk, but can eat real yogurt? That's because the yogurt has bacteria that helps pre-digest the lactose.

 

Which reminds me, your boy might be able to eat cultured/fermented dairy products. He might be able to eat cultured butter, but you need to use it raw, so only add it to food after it's done cooking. For example, mashed potatoes: cook potatoes in broth, mash them, put some on his plate, then add two tablespoons of cultured butter.

 

Remember my example I gave earlier. I can buy bread with whole ingredients, but eating a whole loaf of sourdough in one sitting  doesn't bother me at all, yet one small slice of yeast bread makes me very sick. It's not enough to have "whole ingredients", those ingredients need to be carefully prepared.

 

Another example is that I can't drink milk from the store, but I can eat raw milk or cultured milk products. Both are "whole ingredients", but they are a completely different product. Milk from the store has the enzymes destroyed when the milk is pasteurized

 

One small cup of milk from the store makes me run to the bathroom right away (diarrhea), but I can drink gallons and gallons of raw milk or cultured milk products.

(I know raw milk can be a very controversial topic for some people so I'm not trying to push it, just sharing my experience)

 

I'd be grumpy too, if I wasn't eating half as much as I used to!

 

Weren't you adding a lot of coconut oil or milk to his food? It's a lot of calories so it should keep him full. Please don't limit how much of it you give him, I'd go as far as giving 9 tablespoons of coconut oil everyday. He's growing up, he needs a lot of calories. Not only that, because he has digestion problems, he needs to get even more calories and nutrients than other kids his age.

 

 

So what's left for this kid to eat?

You say he's liking butternut squash and sweet potatoes. That's good, keep feeding him that! Those foods have good nutrients, give him lots!

 

I can promise you that one day you won't be frustrated anymore, thinking "there's nothing he can eat!". One day, your entire family will be jealous of the way he eats, because he will eat delicious food like a king!

 

 

beans, nut butters

Be careful with those, use only dry beans and soak them in water for atleast 24 hours before cooking. As for nuts, soak them in water the night before you feed them to him. Beans and nuts are very difficult  to digest, just like gluten, if you don't neutralize phytic acid. It's the same problem as grains and seeds. Think about it. All those foods (beans, nuts, grains, seeds) are SEEDS, they don't want to be digested, they want to be pooped out (whole) by animals that consume them and grow into plants. Nowadays we can process them into a creamy paste, but the seed's defenses (phytic acid) are still there if you're not careful to neutralize them (fermenting or soaking).

 

 

meats

Give him calorie-dense meats like chuck beef instead of lean beef, or chicken thighs instead of chicken breast. Pork butt instead of lean pork chops. There is a lot more calories and nutrients in the fattier kinds of meat. He needs both the calories and the nutrients. Those cuts of meat will also keep him full longer than lean meats would.

 

 

 

he does NOT like broth BTW

You don't have to give it plain, use it for cooking his meat and his vegetables. When you re-heat leftover meat, boil it in broth. When you cook your sweet potatoes or butternut squash, use broth instead of water. He will get a lot of extra nutrients if you do that :) 

 

You're using coconut oil to fatten up his food, which is great, but I just thought of something else: how about you use chicken/turkey or beef pan drippings to cook his white potatoes? Cut them in small cubes and fry them in the drippings. You can also use it to cook other vegetables like green beans, sliced carrots, or grated cauliflower.

 

 

Wouldn't touch it. Maybe if I add sugar

How about a big fat pinch of salt, instead? Speaking of that, do you salt his food well? Salt is important for your health and as a bonus it makes food taste good. Don't skimp! I can't eat eggs unless it has a generous dose of salt ;-)

 

 

 

who will probably refer us for more allergy testing..

Testing testing testing. I'm glad we have the ability to do testing nowadays, but testing doesn't fix the problem. In my case, if I got tested, I would be allergic to everything! Apples, tomatoes, spinach, potatoes... everything! And it's not true, I'm not allergic to those foods! It's only that my intestines became so damaged that all foods started causing trouble. In the end, it all boils down to two things: the intestines are damaged and inflamed, and need to be healed. The way you do that is, 1) don't keep damaging the intestines 2) heal any existent damage.

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#73 of 99 Old 04-05-2013, 11:51 AM
 
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Eloise, I just wanted to thank you for putting in the time and energy to post all that. Dietary issues with little ones are so tough. Help is so hard to find. rocks.jpg

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#74 of 99 Old 04-05-2013, 06:56 PM - Thread Starter
 
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Eloise, I just wanted to thank you for putting in the time and energy to post all that. Dietary issues with little ones are so tough. Help is so hard to find. rocks.jpg

WSS! THANK YOU! Thank you for all the help and support, and for sharing your story. What a struggle! A friend was recently diagnosed with celiac disease and it was such a long, hard road to get answers. It is so crazy how something so seemingly innocuous can do so much damage. And that so many doctors are still unfamiliar.

 

I do NOT think any of this is voodoo. I think the doctor just meant he is unfamiliar with sensory integration issues, not that he doesn't believe they can be food-related. But truthfully, his only job is to solve the diarrhea problem, so..... Off to other doctors and specialists too, and hopefully we can piece together a solution.

 

I ran out of sunflower seed butter, so he hasn't had nuts/seeds in awhile either. He is still having sleep issues. :( He's been grain free for two weeks and I really thought that might be it, but it's not. 

 

Truth be told, I will not be at all surprised if there is no food causing this at all. Nor will I be surprised if he ends up having to be on a GFCF/soy/corn/egg/nightshade free diet. Or something else equally restrictive. I just want to know, so I can help him feel his best.

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#75 of 99 Old 04-06-2013, 11:36 AM
 
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Have you found out if the doctor will order a blood allergy test.


Created an instant family (7/89 and 5/91) in 1997. Made a baby boy 12/05 adopted a baby girl 8/08. Ask me about tandem adoptive nursing. Now living as gluten, dairy, cane sugar, and tomato free vegetarians. Homeschooling and loving it.

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#76 of 99 Old 04-06-2013, 02:37 PM - Thread Starter
 
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Have you found out if the doctor will order a blood allergy test.

Not yet. It's on my list of phone calls I need to make, but we're having a lot of "activity" in the house right now. As soon as the dust settles I'll be calling.

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#77 of 99 Old 04-11-2013, 01:28 PM - Thread Starter
 
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I'm such a moron. The blood tests the GI doc ordered ARE allergy tests! They are testing for the basics, soy/corn/egg/dairy and a few other things. They are also doing the IgG/E/other things I can't remember now. I feel so sick -- when I took him to the lab the tech said he wasn't sure he could get enough blood to do ALL those tests from such a little guy. They ended up having to use both arms and it was AWFUL. I'm still kind of incredulous that we made it through. He was so scared, and I couldn't soothe him. I hope we never have to do THAT again.

 

I also have the kits to do the stool samples if we need to. I am hoping that they won't be necessary; as it is, his diapers have been GREAT with only one or two exceptions in the past few weeks. And those were nowhere near as bad as the "bad" ones had been. He is dairy and grain free (except rice milk) and doing great. I hope the good poops mean his insides are healing. EloiseMM, are you saying that even now that your gut is healed, you would still test as allergic to those foods?Or just that while your gut is still healing, you would show a reaction, but that once you are healed inside the blood tests would come back normal? I'm not so sure I want to put him through more blood testing, ever, but am just wondering how that all works. I'm planning to keep him somewhat restricted for awhile, like the next several months at least, and then starting to introduce some of those suspicious foods back in gradually to see if they still upset him. I'm so happy that he seems to be doing so much better that I don't want to risk it by changing anything, but at the same time, I'd love for him to be able to eat an apple! He LOVES them, or at least he loves looking at them in the grocery store... :(

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#78 of 99 Old 04-12-2013, 11:58 AM
 
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I'm such a moron. The blood tests the GI doc ordered ARE allergy tests! They are testing for the basics, soy/corn/egg/dairy and a few other things. They are also doing the IgG/E/other things I can't remember now. I feel so sick -- when I took him to the lab the tech said he wasn't sure he could get enough blood to do ALL those tests from such a little guy. They ended up having to use both arms and it was AWFUL. I'm still kind of incredulous that we made it through. He was so scared, and I couldn't soothe him. I hope we never have to do THAT again.

 

And now I feel bad. I looked back at my prior post because I'd thought I'd told you this. I must have posted it somewhere else and thought I told you. So please, put this in your brain for the future...

 

There is a topical anesthetic, brand name is Emla, that can be applied prior to lab draws (and injections.) It pretty much totally numbs the area. You put it on 3/4 to 1 hour before the draw and cover it with clear plastic and tape it in place (or you can use a waterproof band-aid.) Both of my kids have had blood draws or IVs started with no problems because I insisted on this. You have to get a prescription from the pediatrician and put it on yourself. I usually put it on two or three places (ask your ped. you don't want to overdose your kid) so that if they need to draw from a second site it's prepared. The downside is sometimes the emla makes the veins constrict and a bit harder to draw. I've never had that experience, I just know it can happen. There is another, slightly more expensive, medicine that doesn't do that I just don't remember its name.

 

Also, call the ordering doctor NOW and see if they can call the lab NOW to see if they can expand the list of tests, they hold onto the blood so as long as they have enough blood they could do that. 

 

The amount the lab draws has little to do with the amount the lab actually needs. I worked with 1 pound babies in the NICU and we would draw 0.4 ml for a test that they draw 8 ml on an adult. You just have to have the person calling the blood call the actual technicians who will be running the labs to find out what the REAL minimum amount is.


Created an instant family (7/89 and 5/91) in 1997. Made a baby boy 12/05 adopted a baby girl 8/08. Ask me about tandem adoptive nursing. Now living as gluten, dairy, cane sugar, and tomato free vegetarians. Homeschooling and loving it.

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#79 of 99 Old 04-13-2013, 02:41 PM - Thread Starter
 
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Ugh -- Please don't feel bad. Now that you're posting that it sounds familiar. You probably did tell me but I am so scattered right now it completely slipped my mind.

He is doing fine now, except for his stomach. I think he's had too much sweet potato. Or there's something else bothering him now. IDK.... I'm trying not to get discouraged but it's so frustrating. He was doing so much better and then yesterday it went downhill again.
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#80 of 99 Old 04-13-2013, 07:27 PM
 
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So happy to hear his diapers are better. Hope he sleeps better soon.

 

As for the apples, I can't remember if you did, can you cook apple slices in coconut oil? If you cook them they'll be easier to digest. I slice 4 small apples and stir-fry them in 3 heaping tablespoons of oil. Let the oil melt in the pan, and then add the sliced apples. It's done cooking when the slices split in half when you touch them, and the oil is completely absorbed.

 

You can cook a big batch and store in the fridge for later. They're tasty both cold or warm. (though they're kinda slimy cold)

As a bonus, when you cook them their volume reduces to almost half their size, so his little tummy will have room for more apples :-)

 

Peel the apples first because the peel is difficult to digest.

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#81 of 99 Old 04-13-2013, 09:39 PM
 
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(Before I forget... I meant to mention a very important thing. Grain products can be healthy, but if you don't prepare them properly, they take minerals away from your body because of pythic acid... like calcium, iron, zinc... that's probably part of why I got so sick).

 

A lot of icky details in this post, you might not want to read if you're eating :P

 

 

Summary of this post:

I don't think you can say I have an allergy to anything, because I could eat those foods without problems when I lived back home and foods were prepared traditionally, and I don't have any side effects to those foods now that I prepare them traditionally again. I only react to those foods if they're poorly prepared (modern food).

 

Do I have an allergy to wheat if I can eat traditionally prepared wheat without any side effects, but can't if it's not properly prepared?

So what's the point of testing?

 

 

I never got tested for allergies, I was too sick so I couldn't work. Without insurance, I couldn't see a specialist. Glad I didn't, it would have been a waste of money and gas to drive there.

 

My husband got tested when he was young, and like your son he was "allergic to everything". Though just one little problem... he isn't! He can eat everything he's "allergic" to. The difference is that it needs to be prepared traditionally.

He used to have a cold all year long (nearly everyday since he was young) and always had some sort of stomach bug, plus acne all over his body. Now he doesn't.

 

We're on a tight income so we're not going to get tested to see if the "allergies" are gone. I don't see the point in testing anyway  :-) Unless it's something that makes me stop breathing and I die... and in that case I wouldn't need the test to tell me that! ;-)

 

We generally just eat meat (and fish, eggs) and vegetables (and fruits), plus broth and fat for cooking, because that way it's so much easier to shop and cook.  And we do great eating like that. Sometimes we eat grains, milk, and nuts, if we feel like it.

 

If he eats a little ice cream or milk from the store, he's coughing up a lot of green mucus all day long and is always sniffling. But he can eat raw milk or raw ice cream when I make it, and it doesn't cause that problem.

So does that mean he's allergic to milk? Or... not?

 

You read about how I grew up. I ate all sorts of food, but it was prepared by traditional methods. I was not allergic to any food.

Then I moved away and started eating modern foods. And I started reacting to a lot of foods, even vegetables, fruits, seeds and nuts. Regardless of what allergy tests would say, I believe I'm not allergic to any foods. If I were, wouldn't I react to those foods when I lived back home, and wouldn't I still react to those foods now that I eat traditionally-prepared foods again?

 

I can eat nuts if I soak them in water the night before... but they cause bloating, joint pain, and diarrhea if I don't soak them. Does that mean I'm allergic to them... or not?


I can eat a huge loaf of traditional bread without side effects, but I can't eat one slice of modern bread without bloating to 9 months pregnant, having crippling joint pain, or having my hands tremble like Parkinson's disease. Oh, and having diarrhea and farting a lot.

So... am I allergic to gluten... or not? Though I might test positive if I eat modern bread, I'd say I'm not allergic to gluten since I can eat traditionally prepared gluten/bread.

 

Note that I also can't eat modern corn bread. One square slice gives me the same side effects. But when I buy freshly ground flour, and soak it in yogurt or whey overnight before baking, I can eat the whole loaf without feeling side effects. The same is true for other grains.

 

I can eat wheat and other grain muffins, pancakes, waffles, cookies... but the flour needs to be freshly ground and I need to soak it at least overnight (this depends on the temperature in the kitchen, because my kitchen is generally very cold, I end up soaking at least one day). But I can't eat those foods if they're from the grocery store, restaurant...  and I can't eat them if I make them at home "the modern way" either. So it's nothing to do with being home-made, it has to be done the right way. I can eat those products if I buy them from a farmer or store if I know they prepare them traditionally.

 

I can eat these oatmeal and wheat cookies (I generally use regular sugar since I can't afford those fancy pants sugars) but I can't eat oatmeal cookies prepared "the modern way".

 

My husband loves blueberry muffins, so I sometimes make some for him. I soak the wheat and oatmeal flour in fresh lemon juice instead of whey. We slather each warm muffin with a stick of butter. So good!

 

Anyway, even before I started eating those foods, I noticed I needed to have a lot of broth everyday, and eat a lot of animal fat. Probably because I went many years without eating those. I need to eat a lot of fat cuts of beef or pork, and a lot of tallow or lard when I cook, or I start feeling tired and moody... and hungry. When I eat those I'm full for 8 hours, but when replace them with beans and grains, I'm hungry after two hours and end up eating a looooot of calories and still feel hungry...

My husband is the same...

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#82 of 99 Old 04-13-2013, 10:18 PM
 
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Are you still seeing your GI doctor? We had a lot of problems with our daughter her entire life (she is our biological daughter). We thought it was a gluten issue as she tended to get better being gluten free but things did not always add up. She would be horrible get better etc. then last year on her 5th birthday she started a downward spiral again. Anyway long and short of it she has fructose malabsorption disorder. What happens is the fructose gets hung up in the lower intestine and rots. It was a simple helium breath test to discover she had it. Once we discovered what she had the diet was very simple. Most gluten products are high in fructose alone with fruits and veggies. She still can have fructose but we need to make sure she has enough protein. The protein molecule wraps around the fructose molecule and helps it make its way the intestine.


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#83 of 99 Old 04-14-2013, 08:20 AM - Thread Starter
 
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Yes, we have a follow-up with the GI next week and hopefully we'll have the test results back then. I'm going to ask about the fructose malabsorption test -- your daughter's symptoms sound an awful lot like STBAS's!

 

I am really hoping that there is nothing to show on them; his skin prick tests last fall showed he's allergic to NOTHING, at least not foods. He seemed to have some sort of environmental allergy/chronic cold over the fall and winter, but now that the rest of us are suffering with spring allergies, he's fine. So maybe it was his diet, or just him recovering from whatever virus he had when he first came to us.

 

If/when I do reintroduce things like beans and seeds and grains, I will definitely be soaking them! Thanks, Eloise, for all the information. It's so much to assimilate, but I'm trying! I'm hoping this last bout of stomach issues is just his sweet potato limit. I'll be preparing lots of meat today to keep for him during the week so I don't have to rely on beans so much for protein, and other veggies even though I love how easy the SPs are.

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#84 of 99 Old 04-24-2013, 01:03 PM - Thread Starter
 
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UPDATE:

 

His intestines are full of poo from beginning to end. Literally. So gross. But thankfully, there is no blockage or damage or anything else that the doctor would worry about.

 

No allergies, although they were not able to draw enough blood to do all the tests. The doctor said what they did do doesn't indicate a need for further testing, that everything seems normal and that just b/c he's not allergic to something doesn't mean it's not what's causing him problems. So  we'll continue to be low grain/grain free for a couple more weeks, get him cleaned out and back on track, then reintroduce foods and see how that works out for him.

 

Fingers crossed!

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#85 of 99 Old 04-25-2013, 08:00 AM
 
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Wow, poor thing. Good luck! Thank Gd he found you.

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#86 of 99 Old 04-25-2013, 08:11 AM
 
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UPDATE:

 

His intestines are full of poo from beginning to end. Literally. So gross. But thankfully, there is no blockage or damage or anything else that the doctor would worry about.

 

No allergies, although they were not able to draw enough blood to do all the tests. The doctor said what they did do doesn't indicate a need for further testing, that everything seems normal and that just b/c he's not allergic to something doesn't mean it's not what's causing him problems. So  we'll continue to be low grain/grain free for a couple more weeks, get him cleaned out and back on track, then reintroduce foods and see how that works out for him.

 

Fingers crossed!

I've had my fingers crossed for you!

 

Remember that blood tests are only one kind of tool.  They only test for one kind of allergy & there are lots of other stuff (sensitivities, other Ig allergies, celiac, etc.) that can make a person not tolerate a food or "food."  I am glad to see though that this one doctor recognizes that a single negative test means that there are no problems. thumb.gif 

 

Might I suggest that you work on helping his gut heal some before intro'ing his problem foods?  IME, just eliminating stuff for a while is not enough.  IME, the more we reduce things, the less it takes to cause a reaction.  Of course, your little guy could be different, but in our house, if we do try things like gluten, corn, dairy after significant gut healing, we will only do so so we know what happens if there are accidental exposures.  But, that won't be for a long time because we are just that messed up & our path to gut healing has been derailed more than it's been on track. gloomy.gif

 

Best wishes to you both!

Sus


Baby the babies while they're babies so they don't need babying for a lifetime.
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#87 of 99 Old 04-25-2013, 03:01 PM - Thread Starter
 
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LOL! Yes, you may suggest away! I am not exactly sure how to go about healing his gut and knowing how to tell he's healed, so I was going to be posting for suggestions on that when we get to that point. He is still off dairy and most grains. I can't get him to drink broth but I do use it to cook... What else?

I am struggling with wanting him to be fine and able to eat everything, and hoping for an obvious problem that will justify putting all of us on a GFCF diet. It's all selfish of me, but ultimately all I really want is for him to be healthy. He is almost TWENTY months now and has come a long way from the OP about his sleep issues!

I can't tell you all how much your suggestions and support have helped. I really appreciate every reply on this thread, and every mama behind them.
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#88 of 99 Old 04-25-2013, 07:25 PM - Thread Starter
 
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ARGH. Why didn't I mention this in the update???

The preferred method of "cleaning him out" so to speak, is to use Milk of Magnesia.....

 

What I didn't realize when the doc told me to do this is that with the diarrhea he'll have/is now having, comes a horrific rash that burns his skin. In between the poops, he is just chronically leaking (sorry, I know that's gross) so he constantly has poop on his skin that is just killing him.

 

Someone PLEASE tell me there is a cream out there that will protect his little tushie through the dozens of poops/day!!! He was screaming so loud DH wanted to close the windows.

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#89 of 99 Old 04-30-2013, 08:17 AM
 
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My daughter had the same problem due to a reversed colostomy.  We used 1/3 corn starch, 1/3 Target brand zinc oxide cream and 1/3 vaseline.  The stuff is nasty, but it works like magic in healing diaper rash caused by laxatives.

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#90 of 99 Old 04-30-2013, 12:39 PM - Thread Starter
 
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Thanks! I have been layering on the zinc and corn starch and only cleaning it off when he poops. That has been working so far. But I'm really surprised that we are on day 6 and he really hasn't been going as much as I thought he would. It's not much more (if at all) than "normal" for him. Weird. I was expecting an onslaught of poop!

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