New here and DESPERATE for help!!

[Anonymous]

Hi all. Happy to be here!

I have a 14 month son who I believe has milk, soy, and gluten intolerance. I am in desperate need of help. I can’t find a doctor who understands all this as opposed to allergies. It’s become perfectly clear to me that this is what we are dealing with. We are on our second ped doc and second GI doc. I’m sure you all understand that rollarcoaster!

His symptoms are very clear to me… rashes, severe reflux, eating refusal, severe sleep issues, BM issues, the list is just endless. The thing that really cinched it for me was when I read about intolerances causing immune complications. Apperently when the body can’t tolerate anymore of the intolerated food, it absorbs it into the bloodstream and causes other complications and the immune system works to free the body of it. We tried the allergist route-with no success- and he found a complication with his immune system. His numbers were low or something. I asked if it would cause all of what we are dealing with and he said no, but we should check this again. Henry has only been sick once. My ped agreed not to look into it further. Especially with the cost of the tests!!! So now I realize this immune thing he found was probably low due to the intolerances. How clear is that??? And, why didn’t he know that??? No allergies were found.

So, what I need help with is making my son feel better. It’s been 14 months of pure horrible he#$ for us and him!!!!! Motherhood isn’t supposed to be like this. Who do I go to for help? How do I get him on a diet that is milk, soy, and gluten free and good for reflux? How about his nutritional requirements? Calcium? I’m at a loss. Please help.

I did find a website to send away for intolerance testing. I think it costs about $400, but we would know exactly what we are dealing with. I’m tired of the doctors spending my money and not getting any answers. At least this way, we’d know. What do you all think?

Thanks for reading this. I know it’s long.

Amy

[Anonymous]

Hi Amy & Welcome

If your son is intolerant to milk and soy then unless you are breastfeeding, then you need to give him a formula like Nutramigen or Alimentum and if he cant tolerate those then Neocate or Elecare. If he is not having any dairy then you need to give him formula as his milk drink, it will supply all his calcium requirements.

With intolerances most babies will grow out of them by 2 or 3, so hang in there. In the meantime, I would search for a good allergist and keep trying until you find one that will help you. The other thing you might consider is a ped dietitian that specialises in allergies to help with his diet. There are plenty of non dairy and soy alternatives, you just need to be very careful with reading labels and checking ingredients.

You say that he is gluten intolerant – has he been tested for celiac disease? Are there any grains that he can tolerate? Does he tolerate fruits and vegetables?

We have been through all the things you have mentioned but we have it under control now with the right medication, and very careful diet. It does get better.

Perhaps post the location where you live and maybe some other mothers on the board can recommend doctors in your area.

Glad you found us, hope we can help you.

[Anonymous]

Hi Amy! Well… I know how you feel because I am soy, dairy, and gluten intolerant and I have an array of food allergies. I don’t know what to eat. I do find the people at the health food store helpful though.

DD is milk/soy intolerant. She had the classic signs with the mucousy, bloody, stools and painful gas and stomach aches. Also, she had ezcema on her face, particulary on her eye lids. This went away when we got her on neocate. There is a neocate +1 and a neocate jr. I heard that they grow out it around age 2, but in our case it is hereditary. We are fighting our insurance trying to get them to pay for the neocate. OUr GI doc wrote a letter saying it was for nutrition and I think they are finally giving in. We are buying it on ebay now because it is cheaper then ordering it. It took around 5 days before I really saw a difference in her symptoms. Also, check out celia.com if you suspect it. I don’t know if I would trust that website for the intolerences. It is just trial and error as far as I’m concerned. I have been through every possible test, then I started taking certain foods out of my diet 1 by 1 until I figured out what was bothering me. Good luck, hope he feels better soon!

[Anonymous]

Thanks girls for the info.

I have done hours of research since I’ve posted. And I mean hours! It’s a full time job trying to help my son.

In response… Neocate, I’m reluctant to go this route. Henry never did good on any formulas at all. I couldn’t BF for various reasons. He does much better without the formulas. We did try Neocate with no success. Celiac disease… Henry had an upper endoscopy done for reflux etc and they did biopsy his stomach. Negative for celiac. From what I’ve read, you can be gluten sensitive without it turning into celiac. I think “that” is my family history. No celiac ever found in any of us, but all these digestive issues all these years. Brother, sisters, mom, and nieces! That’s a lot of history if you ask me. None of us have celiac. The GI specialist disagrees with me and says he CAN NOT be gluten sensitive without being celiac positive. They did offer to do more biopsies on into his lower bowel. I don’t want to put him through any more testing. So this website… http://www.enterolab.com talks about a simple stool testing for this kind of thing. The doc that came up with this test is gluten sensitive but celiac negative himself as well as his daughter. Through this test it shows how positively you react to certain foods without having allergies or serious diseases. You react enough to cause other issues in your body though. Nothing has ever made more sense to me in all my life, let alone in all that we’ve been through with Henry. Why test? I’m thinking why go gluten free if we don’t have to. It’s sooo extreme. Also, I’m expecting another baby in August and may have the same issues to deal with. If I could go gluten free and breastfeed this time around, it would alleviate a lot of issues. We wouldn’t have to go through 14 mths of trial and error with this next one.

So what does Henry eat right now? He’s milk and soy free. Doing much better. We have to watch acidy things due to reflux. He eats oatmeal for breakfast. Drinks a lot of water with a little white grape juice added. Veggies cooked and blended. Meats cooked and chopped fine. Applesauce. Raw, soft fruits. And for snacks he gets cheerios, toast, bread, waffles, crackers, and fruit puffs. The breakfast and snacks are gluten things. I cut them out even for one day and he sleeps straight through the night. On the go, is the toughest part. fruit isn’t an on the go snack. dried fruit is too hard for him. Breakfast is a tough one as well. Eggs is about all I can come up with. He loves them, but not every day for sure. He only likes them about twice a week. Not very convienent as well.

Sarah, so you yourself are soy,milk and gluten intolerant? What’s your diet like? Did you ever try to BF? I’m in contact with a lady in Colorado for this kind of diet. She is helping me trememdously! If you need any help with it let me know. I’d be happy to pass on the emails. They are long and packed with advice. She helped me realize that the reflux doesn’t cause the food issues, but the food issues cause the reflux in our case. I’m thinking if I can get ahold of his food issues, I’ll make the reflux and other issues better.

I also went to the health food store today. It did help and I at least got some gluten-soy-dairy free snacks for Henry. Very few though. I’ll have to go to the other store about an hour away. It’ll be a project for me. I also bought a calcium supplement for him. That was what I was really worried about.

Keep any info coming. I appriciate it a lot! I’m just trying to make my son feel better and get to the bottom of things.

Thanks again girls

Amy

[Anonymous]

Amy, that would be interesting to read what the woman from Colorado has come up with. Could you forward me an email! [email protected]. I didn’t have success with bfing Ryann, but i did with my first. I guess Ryann got all of my genes unfortunaltey. I can’t really eat anything that I want, everything has to be planned. I eat alot of veggies and meat and potatoes almost every night. The health food store I go to has lists complied for various things, like gluten free foods and the comapanies name and a dairy/soy free list. Helps tremendously when shopping! I am going to visit the website you suggested now! Thanks! Sarah

[Anonymous]

Here is a link to a recent discussion about wheat allergies. Most of the things that we discussed are actually gluten free, so it might help.

https://www.infantreflux.org/forum/search.asp?KW=wheat&SM =1&SI=TC&FM=0&OB=1

It was very challenging at first, but we have found some snacks that Kaelyn can eat and that make eating on the go a lot easier. She can tolerate soy, so I’m not sure if any of these have soy. Sorry. She likes the Gerber dried sweet corn. It’s a lot easier to dissolve than regular dried fruit. Before we discovered her apple allergy, she also loved the dried apples.

Barbara’s Puffins and EnviroKids Gorilla Munch cereal are two of Kaelyn’s favorite snacks. Erewhon makes a gluten free brown rice crisp cereal that she likes too. We use it with Fleishmans unsalted margarine sticks (dairy and soy free) and marshmallows to make rice krispy treats for her. Vann’s makes waflles that are dairy and gluten free. There is a toasted oats cereal (can’t remember the brand) that is also gluten and dairy free. The Toasted Oats actually is the one that dissolves the easiest.

We have found several varieties of rice crackers that she can eat. Unfortunately, she hasn’t liked any of them, so I can’t remember their names.

You said that neocate didn’t work, so that sounds like it limits your formula choices. Some babies with intolerances do well with nutramigen and alimentum, but they are still milk-based formulas, so they can still cause problems. Kaelyn was on nutramigen until she was 14 months old, but looking back, we realize that it was part of her problem. It’s such a tough call.

Have you tried rice milk? I don’t think it has the calcium or protein of cow or soy milk, but it’s better than nothing.

We use blackstrap molasses to add iron and calcium to Kaelyn’s diet. She eats oatmeal all of the time, so we add it to that. I’ve also added it to her pancake batter (Bob’s Red Mill is gluten free. You could make it with rice milk.) and lots of other foods.

Also, if he can tolerate orange juice, you can get calcium enriched orange juice. We were doing that until we realized that she has an intolerance issue with oranges.

If you research celiac and gluten websites, there is some argument about oats and gluten, but most of the recent stuff seems to think that there isn’t gluten in oats. So, that’s the theory that we’ve gone with. They do say to be careful because lots of oat products can have contamination problems with wheat. We decided to take our chances and let her have oat products and she’s been fine.

[Anonymous]

Sarah, did you get my email? If not, let me know and I’ll try again. We moms have to stick together=)

Kim, thanks for all the tips. I need all I can. I went to the store this weekend and got all I could find that was gluten free. Forgot the Fleishmans though:( I’m thinking this is going to be slow going for us, but at least I’m working on it. At least it’s not like an allergy where it’s life of death if he eats it. Afraid to try the oj due to the severe reflux.

It boils down to me making the hour trip to the one peticular health food store. Did find some things to help out for now. Should be tied over for a bit. Snacks are the toughest. Rice cakes work well. And he likes these nut/rice crackers I found. Not much choice for the poor little guy. It does take some time to think about all this. On a bright note, he slept pretty darn well last night. Yahoo! That has happened a handful of times in his 14 mths. I think we are finally getting somewhere. I also put him on a liquid calcium supplement. Makes me feel better.

So, my fears with this next baby… Will he/she be the same as Henry? If so, I’ll need to BF exclusivly. The dillemma is that I have severe PPD. Went to the doctor the other day about it and he would like to see me on meds. It wouldn’t be so much of an issue if I wasn’t planning on BFing, but that makes it a tough decision. I’m really fighting the meds, but on the other hand, unfortunatley,me becoming a danger to myself or family without realizing it after this baby’s born is a real possibility. It’s quite scary!!!! What to do. And it’s not like I can handle all that on top of everything going on now! I could handle the depression if it wasn’t for all the risks. I never thought I’d be having to deal with all these issues. It’s amazing to me really.

Thanks for letting me vent:)

[Anonymous]

amy—-i have 3 children with celiac disease. as young as henry is, the tests for celiac will most likely not be accurate. biopsies of the stomach will definitely NOT show celiac—it is an autoimmune response that happens in the small intestine. there are 2 blood tests that are pretty specific for celiac. two of my girls with celiac have had biopsies, one was iffy, the other was negative—-but they still have celiac. the intestinal damage can be patchy, so it can be missed when biopsies are done—-the scope can only get in about 6 feet.

there IS a non-celiac gluten intolerance—-the enterolab tests will test for intolerances. you can also have gene testing done through them that will tell you if you have the celiac gene and if you have the gluten intolerance gene.

one of my children is IgA deficient, which sometimes can go along with celiac disease—-we had to do gene testing to see if he had celiac. he has the gene, but no active disease right now—he will be tested yearly.

two of my celiac kids also have reflux—-i think the 3rd one does, now, also—-she is complaining alot about her throat burning.

i assume you probably know, but just in case—-oats are not safe for people with gluten problems—-too much cross contamination.

[Anonymous]

Hi Christine,

So what do they eat?

Should we get tested by enterolab?

What if the GI doesn’t beleive in this? They want to do more invasive testing on Henry. I say no way. I’m kinda out on my own with this. No guidance from any of Henry’s docs.

[Anonymous]

Amy, didn’t get the email, whenever you get a chance that would be interesting to read. When’s baby coming? I understand how scary it can be after having a reflux, multiple food intolerant baby. I wonder what I could have done to avoid it, probably nothing. I swear I was so close to running out the front door, like a loony. At least with the 2nd baby you will be able to recognize if there is a problem and quickly assess the situation. PPD- lots of us out there going/gone through it, have to take care of mom first in order to take care of babies!

[Anonymous]

amy, i forgot to tell you, i have had alot of trouble with depression and anxiety over the years. i have taken antidepressants while i was pregnant. i have also nursed some of my children while taking antidepressant with no ill effects.

as far as eating—-we actually eat pretty much the same way we did before the celiac diagnosis. we bake with alot of different flours, and most of our baking has been very successful. we use xanthan gum to replace the gluten. we have used rice sticks for dishes that use noodles—-but then we discovered tinkyada pasta—–it is really good, nothing but brown rice and water, but it tastes just like wheat pasta. we still make pancakes and waffles and muffins, just gluten free.

kinnikinnik makes some really good gluten free products. i have ordered my girls donuts, sweet rolls, bagels, english muffins, animal crackers and even some cookies that are similar to oreos. we have found gluten free mushroom soup to use in recipes, and we buy hormel chilie now instead of nalley’s. one of the cold cereals i have bought for my girls was a real hit—-kassie says she thinks it is the best cereal she has ever had—-even before celiac. it was called perky-o’s. looks like cheerios.

i recently bought some gluten-free oats grown and processed under pretty strict standards to assure that they are gluten free. they were pretty pricey, but my girls like granola, so i can make it for them now. gluten free has been more expensive for us—-but not nearly as difficult as i thought it would be. post cocoa pebbles and post fruity pebbles are both gluten free. cocoa puffs are now gluten free—but you have to make sure you get the new boxes—some of the old ones with gluten are still on the shelves. there is also a cereal called island berry neopets (something like that) that is gluten free. they are all sweet cereals, but they aren’t very expensive at walmart and are “mainstream” foods that are easily found.

bette hagman has some gluten free cookbooks and most of the recipes can substitute whatever you need, rather than milk or soy. sometimes a celiac will be lactose intolerant early on, but after they have been on the diet for awhile, the lactose intolerance goes away.

alot of people on celiac.com have used enterolab. it can still test for celiac even if someone has been gluten free for a while—–other tests will be inaccurate if you are not eating gluten. if your son does better off of gluten—then keep him off of it. there are a number of people on celiac.com that have never been officially diagnosed with celiac by tests—-they just had such a positive dietary response, that they stay gluten free. feel free to e-mail me if you want to talk more. [email protected] i will be gone for a few days probably—-one of my kids has been in the hospital since wed. kevin is with her right now to give me a break, but i go back tomorrow.

[Anonymous]

Sarah, I tried to email you again. We’ll see what happens. Let me know. Maybe I should just give you my email and start there.

Christine, what a load of info you’ve given me/us(reading this post). The town I live in is so small. We haven’t caught onto the whole nutritious eating thing yet. The grocery stores here just don’t carry what I need. I’m going to keep on keepin on though. I’ll just do my best until I can come up with something. Maybe even order things online.

So, Henry slept wonderfully last night. He didn’t have much gluten yesterday. How about that?? and today he’s had 2 pretty normal BMs. That’s pretty significant for him. They haven’t been normal in a while. He’s been refluxing a lot the last few days. I’ll have to figure out what that’s all about. The change in diet I’m sure is causing other things to happen in his body.

I do think I’ll send away to enterolab for tests for me and Henry. I’m tired of the guessing game. At least that way I’ll know for sure. I just hate to spend all the money on top of everything else going on with our medical expenses. At least that would pretty much be the last of it for testing. Can you hear me rationalizing this in my head??

You all have been great support for me! At a time when I need it most! Keep the ideas and recipes coming. I’m sure this won’t be the last we all talk. I’ll be needing all the help I can get. Thanks!

[Anonymous]

Well, today I placed the order for the “enterolab” tests. I’ll post the reslults in about a month I guess.

Kim, I looked at the Fleishmans unsalted margarine and it’s got soy lecithin in it. I’m avoiding soy, so should I avoid that?

I found a really great site for avoiding certain foods and buying foods… http://www.allergygrocery.com This site is really cool ‘cuz you type in the foods you want to avoid and it’ll give you a list of things you can buy. I didn’t know if this site was mentioned here already, but I thought I’d tell you anyway.

Sarah, did the email work this time??? You can just email me and we’ll try it that way… [email protected]

[Anonymous]

About the ppd and meds, I took zoloft during and after my pregnancy and I breastfed my oldest for almost 2 years, he’s a happy healthy 6 year old, and super smart (not saying meds are or aren’t good/bad, just letting you know about my experience).

[Author]

Posts