elaine33

I hope you consider looking for counseling for yourself and your husband before you take a young child to a counselor. Parenting strategies including communicating effectively with your toddler will help you to take back your parental control. A four year old should not command so much attention nor dictate the meals provided. Call me old fashioned, but the child does not rule the house.

I wish you luck and success in this situation. But I believe the problem is not with the child it is with you.

OUCH. I don't even know how to respond. I asked for help with a specific situation about my son (who you have no idea about) and everyone has been incredibly helpful. You have no idea about my life. FTR, if it makes you feel better, I have been in counseling for years because of dealing with this illness that no doctor could figure out for me until just recently. That included family counseling because of the way it affected the family. And yes, one of the ways it affected the family is that I wasn't well enough often to make gourmet meals with the whole family participating in, because sometimes we were just wondering if I should present to the emergency room that day or not. Could that have affected my son's eating habits? Possibly. But we do the best we can, and being ill has made me careful not to think I know about a situation until I've walked in someone's elses shoes.

He sounds just like my son. My son was sooo undernourished that the docs said to give him anything he would eat. We did and his menu is the same of your son's. After going gluten-free he is doing some better and will eat some grilled meats, but NO veggies, unless you count fries and tots. It's so hard because I LOVE veggies and will eat anything. My husband is picky, but not as bad as our son. I started taking the, eat what is in front of you approach last month, and got thrown up on a few times. I guess we're kinda middle of the road now. If we make something like grilled chicken, then I make him eat it before he can have anything else. I'm not pushing veggies yet because he will eat a lot of fruits. I'm starting with things that are similar to what he's already eating, like grilled meats, so it's not so hard of a transition, then I plan to add in a few veggies here and there. I don't know if this is right, just what we're trying.

As for the meatballs, make them with gluten-free bread crumbs. Omitting the cheese won't make too much difference. I buy Breadless Coating chicken fingers that are gluten-free at Publix and these are really good. I've also made my own using Kinnikinnik chicken coating or mashed potato flakes and spices.

If you're going to take a firm hand with him, one of you can't give in. It will all be over if you start that. Once he tries the steak, I bet he'll love it. Cole did. We've waited as long as 4 hours for him to eat the meat offered him before, but he HAD to eat it before he could have anything else, even just a few bites. Now when he starts whining, we just say, "You know you have to eat this before you get anything else, so suck it up and eat it, then you can have what you want." And he eats it. If we hadn't started out being stubborn we wouldn't have gotten this far even. As for the buns, why not make rolls out of Pamela's or Gluten Free Pantry bread mix and serve "mini burgers". Just thought of that one. Think I'll do it tonight. BTW - Both of those mixes are very good and are sold in bulk at great prices on Amazon.

I think the key is to start with foods that are similar to what they like in small quantities, the move forward from there. And to be consisitent with the demands.

Hope that's of some help!

Oh, that is so helpful. I am not glad that you have fussy eaters, but I am SO glad I'm not alone. Ryan has always, always, always been fussy even with baby food. It was incredible to me because my daughter by 18 months was eating everything - olives out of the jar, escarole soup (I remember her picking the bowl up and drinking the juice from it), salads, everything.

I has been a major battle to just get him to eat the foods he does now. He does eat a decent array of fruits and the corn on the cob thing is definitely a hit or miss.

So maybe I should take a different approach? I do have a loaf of Pamela's bread waiting to rise upstairs. Maybe we will try PB & J on that tonight. I am going to have to somehow bake that and then get to the health food store (not close) before picking the kids up from school.

I agree a united front is going to work better. I have talked to my hsuband about it several times but I think he is in denial, and I think that is partly because we don't want to do the biopsy and we are hurting financially right now to do Enterolab, so the best choice is do the diet challenge. I know he knows it is true because he has seen the health problems we have both had (Ryan had colic, baby eczema, allergies and asthma with some hyperactivity although Pat denies that he is anything less than the average boy - I disagree). I know it is true because I know how I have reacted to wheat for years yet still kept on eating it in small amounts, thinking it was just something I couldn't digest very well. And then when I saw Ryan doubled over in pain from it, then I knew we had to talk to someone who KNEW about these things.

Sorry to ramble, but thanks so much for your help, everyone!

Edited to add:

Mich, that is really interesting to me because we have a ton of boys in our family and ALL of them have food issues. My husband ate hardly anything growing up - cereal mostly, because he was so picky. Ryan also has the texture/smell thing too. He doesn't like the way things feel and the way they smell.

I am so torn about what to do. I am thinking that at some meals I will give him more acceptable foods that he likes so he doesn't starve (he will starve himself for a long time, very very stubborn boy), and then other meals offer new things that he might be amenable to. No treats unless he eats something nourishing at all meals, maybe?

I just don't know. I think this is going to have to be one of those trial and error things that most of parenting is anyway!

Ryan is majorly fussy about his foods. He only eats about three or four different proteins - my meatballs, Perdue nuggets, grilled cheese, cheeseburgers and hot dogs - and pizza, too. The pizza and grilled cheese are out because of milk, Perdue nuggets are out because of wheat, hamburger can only be eaten on a plate now same with hot dogs. I'm not sure when I take out the cheeses and bread crumbs out of my Italian meatballs what they are going to taste like. He does eat fruit but the only veggie he eats is corn on the cob.

So I'm figuring that we are going to basically have to somehow get him to eat new foods without being overly traumatic with this. Last night I made an abundant dinner of steak, rice, Alexia's potatoes (yum), peas, broccoli medley, applesauce, blueberries and ketchup. I told him he could eat anything on the table, and that he could have his steak in ketchup or applesauce. He ate nothing and was whining how hungry he was. I told him I wasn't making anything special and he kept on whining about how hungry he was. I told him he could stay with us if he stopped whining but if he wanted to whine, he had to go upstairs because we were eating dinner. So off he went. He came back a while later and asked for an apple. Me and my husband had a standoff about it and my hubby caved. I felt that he needed to try something new and go hungry if he doesn't, that he will eventually eat, but my husband thinks we should make the transition as easy as possible for him because this is a big deal.

My thinking is that when he gets hungry enough, he will eat a hamburger on a plate or whatever relatively kid friendly but not totally catering to him foods that he will eat. Pat thinks that we should buy the Ian's nuggets and feed him hot dogs, my altered meatballs and let him continue on his very limited diet just altered a little until he gets older when he will try new things.

Emotionally, this is really hard on all of us and Ryan too because food has always been an issue for him with him not liking new things. I'm even thinking we migh need counseling or something.

Anyone have any ideas or advice? I need all the support I can get right now. THanks.

w/o cheese and

My daughter is relatively picky also, though she's been expanding her tastes a bit lately. Is Ryan just gluten free or is he casein free as well?

We are both casein and gluten free. Thanks so much for the great ideas!!.

Nini, I am so hopeful about the Ian's chicken nuggets. Nuggets have been a favorite of his for a while and thinking of taking them away from him has been a major hurdle for me. Are they any good? I looked on their website and it says Acme and Shop-Rite have them so I will have to check that out. Are you having to go to a specialty store to find them in your area?

Ryan is a very, very picky eater and has been since infancy. I have often thought he has some sensory and texture issues because he turned down a good deal of baby food as a baby. Even the smells of foods gross him out. My older daughter is 16 and she ate EVERYTHING so this was a new experience for me. It was really difficult for me to just get him to expand his menu when I didn't know he had dietary restrictions (other than the milk, which we knew about but he was tolerating yogurt and cheese okay but the nutritionist says no to all dairy/casein).

This is going to be a major battle. We are thinking that starting next week we are going to have no gluten in the house and offer him his breakfast, lunch and dinner which will mostly all be new foods to him as everything he would eat before was breaded. If he doesn't eat, he will have to wait until the next snack/meal.

Anyone have any helpful advice? I should say more helpful advice.

Hi Elaine,

Our November meeting will be our "Thanksgiving" cover dish. You don't need to worry about

bringing something as there is always plenty of food. Our members are supposed to bring

the recipe for items that they make so that individuals with multiple sensitivities know what

they can eat. It will be on Sunday, Nov. 5 at 2 pm.

We meet at the Barry D. Brown Health Education Center at Virtua / West Jersey Hospital,

Carne Blvd, Voorhees New Jersey.

Bill Lucas, Burlington, NJ U.S.A.

lucaswe@earthlink.net

Chairman of CSA Southern New Jersey Chapter # 9;

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Thanks Bill, I don't think tomorrow I will be able to make it possibly the cookie exchange. How long do meetings go? I teach Sunday school and then have church after so Sundays are a bit rough for me for doing things.

Thanks so much for all the wonderful suggestions. I should have mentioned that we have milk problems as well. I did buy Alexias potato wedges to make with steak for dinner tomorrow night.

Are all Ore-Ida fries gluten free because we love Crispers but it wasn't on the list that I downloaded from someone's signature in this forum? (I"m sorry, I can't remember whose it was but thanks so much for it).

Thanks so much. Well it has been about 7 hours and we are still well. I always bought the Aunt Jemima, too, but I wasn't sure if that was gluten free or not that's how I wound up with the pure maple syrup. It was good and no preservatives so I think we'll stick with it, although it is more expensive.

Ryan is SO fussy and this is making things extremely stressful for me in terms of getting him to stick to the diet. We are going full force the following week because it is conference week and he will be at home for lunch so that will make things easier. I am trying to plan and stock up for our elimination week. Any helpful ideas would be SO appreciated. Thank you.

I've been to local health food store and Whole Foods, but now I'm going regular shopping and hoping to save a lot more money getting as much regular stuff I can at the supermarket. What regular kid-friendly foods can you buy. Rice cakes okay there or do you have to go to the health food store? How about rice crispy treats? Rice cereals?

I went to Whole Foods Thurs and brought real maple syrup. I opened it when I came home to see how it was and put it in the pantry. This morning I made Pamela's gluten-free pancakes for DS and put the syrup on, but when I was putting it away I saw that it was supposed to be refrigerated.

Are we going to get sick?

Thanks everyone.

Amooliakin, I think that is what I am feeling about knowing for sure. Is the for sure test the biopsy, though? I do have a fear of surgeries because I have major issues with medications and anesthesia (I actually crashed during my c-section delivering him because of the spinal and the narcotics they put in it). I am pretty much sensitive to a ton of things if I ingest them, not as much environmental but somewhat. So if I could know for sure by the blood test but I really don't think I want to go ahead with the biopsy for him (and definitely not for me) because if he is anything like me in that dept I don't want to do that to him.

Thanks jayhawk, mama and nini, for the input. I guess because of skeptical people in my family I feel like I need some type of proof more so than a diet. I guess I am needing to hear that the diet is a valid diagnostic tool.

Mama, my Ryan is 7, but has been 97th percentile since he was about 18 months. He was 8'4" at birth.

Besides the belly issues, did you see an improvement in behaviors with the diet as well? I am thinking I might need to do Feingold in conjunction with this because I have noticed he doesn't do well with food dyes, either.

Ryan is 7. He has always been a very allergic kid, colicky, gassy, baby eczema, diagnosed with allergies and asthma by age 4, spent three months breaking out in hives a few springs ago, etc and at times can be pretty unfocused and hyper. He allergy skin tested at 4 and was negative for everything. He has also been very fussy eating new foods and has stuck with a pretty basic diet which wasn't terrific. I have always tried to sneak new foods into him and in place of his pasta in the spring I gave him whole wheat pasta which he gobbled up and didn't notice the difference. Well he had severe reaction in the form of belly pain, but as he was running around at the time I thought it was an asthma-related thing, gave him Albuterol, he rested awhile and felt a bit better. The next week I did the same thing to him. We were up all night with belly pain from this. I took him to the pedi who said she didn't think he was allergic to wheat because he ate a lot of other refined wheat products without a problem. I have since taken him to an integrative doctor and a nutritionist. They both feel he has gluten and milk intolerance ( I did know about the milk since he was a baby). However, he has no failure to thrive, he is actually huge (tall and big boned), which is making me doubt the gluten diagnosis.

Do you think his reaction to wheat alone is enough to say for sure? He has never reacted this way to any other food.

Thanks, I am confused and overwhelmed about this. Maybe I need a hammer to hit me over the head.

It seems most of my reading about celiac disease indicates a major weight loss. My son has no problem with weight gain, but he has asthma, fatigue, crankiness, extreme tummy pains and gas with whole wheat. I haven't decided if I am going to proceed with testing/biopsy or just the elimination diet, yet.

My symptoms are more neurologic. When I was at my worst, I lost a significant amount of weight, but now that they have me all hopped up on anxiety meds and beta blockers, I have put the weight back on.

I'm thinking because of the not losing weight we are probably gluten intolerant. Actually, leaky gut makes me intolerant of lots of things.

Pop Secret is one of the brands I've used, always read your ingredient labels just to be safe. I believe Pop Secret is made by General Mills and they will not hide gluten in any of their ingredients so if you do not see any obvious wheat, barley, rye or oats then it's safe. I also use Orville Redenbachers popcorn and Act II

That's good news. Thanks so much.

Are the brand name microwave popcorns okay for an occasional snack? My son loves them.

I was taking very high doses (my sister has MS and she takes it this way). Averaging, I think I took 500 mcg every three days for about two weeks, so about 2000 to 2500 mcg?

Here is a link to what I was taking - don't know how mcg converts to mg ?

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I had infertility issues and irregular periods my whole life. I had two late pregnancy losses and saw a reproductive endocrinologist, who diagnosed me with polycystic ovarian syndrome because of the appearance of a lot of small pearl-like cysts on my ovaries. His information was so much more helpful and accurate than my OB's, so I would recommend a reproductive endo very much.

Here is a site about PCOS - www.soulcysters.com

My mom was diagnosed last winter with a B12 deficiency. She lives 1500 miles from me with her husband so I don't know a lot of her medical history, just what I get from her husband as she has some dementia and she also refuses to talk about a lot of things. She has always had chronic health problems very similar to mine, so I have a lot of fear I am headed towards dementia eventually.

When I was told of her deficiency and had read up on it a little, I started supplementing for a couple of weeks with methylcobalamine. I was also in touch with a hematologist for some mild anemia issues and asked to be tested. I went off the B12 and about three weeks later had a B12 level done by my hematologist which he said came back normal at 520. I am reading that a lot of holistic people and even other countries like to see the level about 500, so even in that scope I am considered normal. I have some neurologic issues. I am wondering if the methylcobalamine I took in that two week period could have bumped me up, and how much?

Thanks for any help.

this place at Jeff sounds great.

how did you find your way there?

Well my son and I had been to a ton of different purely medical doctors. Some were totally not helpful and some were trying really hard to be helpful but had no real answers for us. My sister has MS (now I'm thinking she's celiac), and she has done totally holistic therapies including dietary restrictions and has done fairly well. I know my husband is pretty leary of holistic docs, plus I haven't really worked significantly since my health problems started so I needed to find a place that took my insurance for financial reasons. I went online and googled integrative medicines and just gave it a shot. I have been pretty pleased so far.

Did you get a celiac disease dx from a gasto or internist or this place? I actually don't have a diagnosis yet, but this Dr who is an MD is nearly 100 percent that I have a leaky gut. He is going to have me take this test (am waiting on receiving the sugar compound from the pharmacy), and he sent my son to a nutritionist, who also felt I had progressed from wheat/milk allergy into leaky gut. She wants me to start on elimination diet right after I take this Mannitol test (intestinal permeability).

lots of questions..I've been gluten-free for 16 months and was doing so well and now seems like alot of this 'leaky gut and possible adrenal fatigue' are coming up.

thanks for the info on the test.

can you get this though you personal dr.? I don't think I can get this through my personal md. I only go to him for sore throats and flu shots. I am having to pay for the intestinal test but it is only $100.

Hope this helps.

Welcome Elaine

Who cares what thread you come to join on..we're just glad your here.

Can you tell me what test your dr is doing to prove Leaky gut.

i'm needing to be tested for that also

Good luck

were glad you joined.

judy in philly

Hi Judy, I grew up in Media, by the way , graduated from Penncrest, and still live in Delco.

The test I am having is an intestinal permeability test. I am doing it at home. I have to drink a sugar mixture and then spend six hours collecting all my urine, then mixing it in a few test tubes and sending it back to the lab. My doctor is at the Myrna Brind Center for Integrative Medicine at Jefferson in Philly. He said they will see if I am spilling things I should not be into my urine because my gut is letting through things in bigger chunks than it should be. If this is the case, then I imagine I am going to be allergic or having to avoid a whole lot of foods until we can get this healed, if this is indeed the case. I am gathering they think wheat and/or other food allergies caused this, but this is all very new to me so I might be messing up some of the info right now.

Thanks for all the information.

We are still eating gluten as this is all just now coming to light for us. I have to say I am feeling so frustrated right now as I have had symptoms of this for years, have told numerous doctors about this, have seen specialists, neurologists, cardiologists, endocrinologists for all of my health problems and no one has ever mentioned food allergies causing this to be my problems. I have had my son to so many different doctors, including a pulmonologist at CHOP and several different allergists.

I am not sure where I should head from here. The nutritionist wants me to start him on an elimination diet from wheat, dairy, sugar and strawberries. If I do this and start phasing this stuff out of his system (it is going to be a terrible battle with him, he is really fussy and strong-willed), and he starts feeling better, then I can't see putting him back on just to get a positive test result.

Hi All. My name is Elaine and I am very close to turning 40 years old. I live in Pennsylvania with my husband and two children. My 7 year old son has had allergy issues since he was an infant, with rashes on his face, gas, breast and formula intolerances, terrible colic finally dx with mild asthma not significantly helped with a lot of the coventional medicines. I have recently taken him to an integrative doctor at Thomas Jefferson University (and then subsequently myself). He felt he has significant food intolerance issues and referred us to the nutritionist who is really basically convinced without testing on him (I am to have an intestinal permeability test for leaky gut) that we have several food intolerances mainly being wheat/gluten and dairy for starters, and mine has progressed on to leaky gut.

I have been very sick for a long time with neurologic type symptoms (POTS, orthostatic hypotension, brain freezes, intermittent numbness, stomach issues, rectal spasm, endometriosis, PCOS, exercise intolerance, recurrent miscarriage , infertility, so on and so on) and my family history is significant.

I know wheat bothers me and I avoid it in the whole grain department, but do eat pasta which makes me feel like someone is blowing air into my head, and with too much will cause stomach distress and diarrhea, and pretzels. Whole grains absolutely kill me, including oats. I have given my son whole wheat pasta twice and he double over in pain twice. We are both intolerant to milk, although I seem to be able to eat some cheeses without significant distress as does he (and yogurt) but according to the nutritionist, even though we are not feeling the pain, these foods are causing us harm.

I see that you all have gone through numerous tests to be diagnosed with this. What tests do you think are worth pursuing or should I say no to.

Is celiac similar to leaky gut?

I'm sure I have a ton more, I'm just a bit overloaded with information right now. Thanks.

Hi, I'm new and I'm outside of Philly. I obviously missed the October meeting but would love info about the next one.

Oh my. Hello. This is my first post here. I have no diagnosis yet, but have seen an integrative M.D. and a nutritionist and the nutritionist is convinced without any testing that both me and my 7 year old son have wheat/celiac intolerance/allergy. I am having to start with an intestinal permeability test for leaky gut. I can't even begin to list the number of things I have wrong with me (too depressing at the moment) Mainly, though I have neurologic problems with the main symptom being palpitations and rapid heartbeat (DX with POTS four years ago) and my son has asthma and allergies and fatigue/hyperactivity/focus issues.

I HAVE this same rectal pain and have had it for many years. I cannot even believe that this may all be coming from wheat. I actually feel I could cry that I may have an answer to a lot of my problems. I don't want to get my hopes up.

Is this all worse or happen more often around the time of your period?

What a thread to introduce myself on, but hi to everyone and look forward to getting to know all of you. I need all the support I can get right now.