I tried so hard, yet failed--update post 23--new update at bottom

[Therese's Mommy]

My 2yo dd has so many food allergies. I have worked hard to give her as balanced of a diet as I can. She surely eats a much healthier diet than probably a vast majority of children her age (or anyone for that matter). I haven't given her any supplements for fear of spending tons of money on something that she would react to (her list of allergens is long). I just worked hard to keep her away from known allergens and tried to slowly introduce new nutrient rich foods to her.

She obviously hasn't been feeling well recently. No changes in diet, so it wasn't food related. We just figured it was related to the new addition to our family, although she loves her baby sister and has shown no jealousy or anything like that towards her. Then I noticed last week that her neck looked funny. My poor baby has a goiter Her ped suspects (as do I) an iodine deficiency. The child has no iodine in her diet at all. I wasn't using iodized salt with her for fear of the additives. Her ped came over today and drew blood to test for a lot of stuff. We know that most of the blood work is back and everything so far is normal except her liver function is a little off (he said this is common with hypothyroidism). We are waiting on the thyroid tests; we should know the results Monday at the latest. We have a cup of her urine in the fridge to test her iodine levels. In the meantime I am adding Hain's iodized sea salt to her water and her food. Her ped expects her to go on a thyroid med until her iodine level gets up to where it belongs. Of course, all of this is assuming it is the iodine, but it does make perfect sense.

So, I tried so hard to do what was right for my dd and I failed. Not sure why I am posting this, perhaps to give others a heads up with regards to iodine. All the foods that contain it are not in her diet and I am sure she is not the only child out there for which this is the case. Make sure your lo is getting iodine

[rhesp1212]

Hey Mamma,
I'm so sorry. Please don't beat yourself up.....we do the best we can and it's impossible for us to think of everything! you're doing a great job providing for your daughter.

If you're looking for a supplement, my DS (who has FPIES and reacts to EVERYTHING) is on a complete multivitamin that is hypoallergenic (no additives, preservatives, etc.). It comes in a powder form and we mix it with a little bit of pure maple syrup and he gobbles it up! It's called Nano VM made by Solace Nutrition. The dietician at our local children's hospital recommended it to us. It covers 100% of their vitamin and mineral needs.

[kjbrown92]

You have me wondering about this now. My DS, DD2 and I can't have corn so we don't have iodized salt in the house anymore. And DD2 can't have kelp. The only things on the list of iodine sources that she can have are eggs and poultry. And DS can't have either of those. I started looking for a supplement, but they're all from kelp, so I'm not sure how to add it into our diets... Thanks for the heads up. And you're trying so hard. I don't think you "failed" just because you didn't see that one coming. Was there a health care practitioner involved that knew that the child couldn't have certain foods? They should also be looking for things like that, so you can't take all the blame yourself.

[changingseasons]

Ugh. That makes me nervous too. We don't have any sources in our diet either.

Originally Posted by rhesp1212

If you're looking for a supplement, my DS (who has FPIES and reacts to EVERYTHING) is on a complete multivitamin that is hypoallergenic (no additives, preservatives, etc.). It comes in a powder form and we mix it with a little bit of pure maple syrup and he gobbles it up! It's called Nano VM made by Solace Nutrition. The dietician at our local children's hospital recommended it to us. It covers 100% of their vitamin and mineral needs.

hmm... I would be interested to know more about this, but I can almost guarantee you that it's not completely allergen free. I have searched for over a year for a multi (childrens OR adult) that doesn't have allergen derivatives in it, and I'm convinced that it does not exist. For example, I can almost guarantee that the vitamin C is derived from corn (my DD is allergic, and will react to traces even if proteins have been removed), and the vitamin E from soy. Have you talked to this company to find out what the vitamins are derived from?

[lil_miss_understood]

As someone with hypoT, this has been a serious concern here as well. I don't use iodized salt and, although we use a lot of potatoes, the iodine in foods isn't necessarily as high as some nutrition data suggests.
One of the things I've considered doing is to grow my own vegetables and use fish meal and sea weed as fertilizer. Although it might not be as much iodine as we need, it would be *some*. Other than that, the only option I can think of is Lugol's or Iodoral.
I mentioned this to my primary care doctor at one point (trying to get a referral to a nutritionist) and she pretty much poo-pooed me, told me that "it's not really a big deal. Plenty of foods have iodine. I'll send you a list." (then never sent me the list)

[changingseasons]

Originally Posted by JacquelineR

One of the things I've considered doing is to grow my own vegetables and use fish meal and sea weed as fertilizer. Although it might not be as much iodine as we need, it would be *some*. Other than that, the only option I can think of is Lugol's or Iodoral.

Huh. That's a good idea. I should start looking into that now for my garden next year. JR- as always, you're brilliant.

[FairyRae]

Originally Posted by rhesp1212

If you're looking for a supplement, my DS (who has FPIES and reacts to EVERYTHING) is on a complete multivitamin that is hypoallergenic (no additives, preservatives, etc.). It comes in a powder form and we mix it with a little bit of pure maple syrup and he gobbles it up! It's called Nano VM made by Solace Nutrition.

I looked this up here and it does not say corn free. Just fyi!

But it does say:

Hypoallergenic - Allergen tested and analyzed at No Detectable Level (NDL) for egg, milk, soy, wheat, fish, shellfish, walnut, almond and peanut.

[kjbrown92]

Actually the 9yo-18yo one does say:
Hypoallergenic - Allergen tested and analyzed at No Detectable Level (NDL) for egg, milk, soy, wheat, fish, shellfish, walnut, almond and peanut.
Free from corn derived ingredients
Free from - Additives, sweeteners, flavorings, gluten and casein

The one for younger kids doesn't say the "free from corn...." statement, which leads me to believe that it does have corn. I'd still have to find all the actual ingredients because my DS has such varied food intolerances, but it's possible.

[changingseasons]

I just want to point out that the No Detectable Level is (I'm assuming) checking for proteins, which is great for IgE kids.... but for those with IgG too, that doesn't necessarily mean no reaction (even for really sensitive IgE kids too!) That means that the proteins are removed, but NOT that those foods weren't used in the making of the product.

[Therese's Mommy]

Well I hope you all look into this. I won't know my dd's iodine level until probably at least Tue since I am dropping off her urine sample in the morning, but I really think it is going to be in the tank. Her thyroid labs came back and they are all bad, giving her a diagnosis of hypothyroidism. We have an order in for an urgent appt down at the Children's Hospital of Philadelphia so her ped said we will be in for an appt down there this week. He has been consulting with the endos down there. She started on her thyroid meds this morning, but dh and I think that the iodine in the salt started to help her a little before she even got the thyroid meds. We will hopefully see her turn around in a week or so. We are still waiting for her thyroid antibodies to come back. If they are positive then we are dealing with something like Hashimoto's. I really don't think that is going to be the case though, I really think it is going to just be the iodine. Seriously, she has none of the iodine foods in her diet.

The Hain's iodized sea salt is not that bad for ingredients. It certainly had the shortest list of any of the iodized salts at my grocery store. The ingredients are: salt, calcium silicate (anticaking agent), dextrose, potassium iodide, sodium bicarbonate. I don't know what calcium silicate and dextrose are. I haven't taken the time to research them because right now she needs to take this, I have no choice. I just pray they aren't things she will react to. If you have any info on those things please let me know. If she will react to them perhaps I can get the endo to write her a script for an iodine supplement. They just advised my ped to tell me to use iodized salt. I think he gave me a reason, but my head is spinning these days and I miss some things.

On another related note that the people on this board will find interesting, my dd was asking for eggs and cheese today. This is a child who always refused eggs when I gave them to her. I later found out she was allergic to them. The last time I offered eggs to her she was less than a year (she is now 2.5 yrs). She has *never* once asked for an egg or asked to taste an egg...not once. She is *highly* allergic to milk. She breaks out in hives from just touching milk/milk products. She has *never* had milk/milk products and has *never* asked for them. Now all of a sudden she wanted them? They both are good sources of iodine. I know we will often crave things when we need certain nutrients, but how could she know that is what her body would want? It is just an odd thing that is probably just a coincidence...weird, huh?

Thanks for all your kind words

[kjbrown92]

dextrose is corn, which is why we don't do iodized salt.
The vitamin didn't say specifically proteins, so I was hopeful that it meant NDL of the actual food, not just the protein.
From what I've read about iodized salt, the iodine in it isn't very well absorbed anyway, so I think I'd rather get it from other sources, that are better absorbed. I just don't know what those things are. If it involves antibodies, then it is more than just hypothyroid. I've been off corn/iodized salt for 1.5 years and my thyroid numbers are still fine, though I have seaweed in sushi every couple months, and I can eat a lot of the other sources (poultry, eggs, etc.). DD2 has been off corn for 3 years, and she's been off all seaweed for 1.5 years, though she can still have eggs and poultry too. I'm wondering if I should get their numbers checked....

[FairyRae]

Originally Posted by Therese's Mommy

I don't know what calcium silicate and dextrose are. I haven't taken the time to research them because right now she needs to take this, I have no choice. I just pray they aren't things she will react to. If you have any info on those things please let me know.

Dextrose is made from corn (I believe).

And according to wikepedia, calcium silicate is

A white free-flowing powder derived from limestone and diatomaceous earth, calcium silicate has no known adverse effects to health

HTH!

[FairyRae]

Originally Posted by kjbrown92

Actually the 9yo-18yo one does say:
Hypoallergenic - Allergen tested and analyzed at No Detectable Level (NDL) for egg, milk, soy, wheat, fish, shellfish, walnut, almond and peanut.
Free from corn derived ingredients
Free from - Additives, sweeteners, flavorings, gluten and casein

The one for younger kids doesn't say the "free from corn...." statement, which leads me to believe that it does have corn. I'd still have to find all the actual ingredients because my DS has such varied food intolerances, but it's possible.

Thanks for checking that Kathy--I totally only looked at the one for 1-4 year olds...

[kjbrown92]

I was doing a search and came across Pure Encapsulations iodine. It's not very expensive. And "looks" safe. But I'll have to call the company and ask what the source is of the iodine. But that's a possibility.

[Therese's Mommy]

Thanks for the info on the dextrose and calcium silicate. I had heard that iodized salt has corn and that was specifically why I was avoiding it. I am not sure if dd has a problem with corn. She has tested negative for it with both a skin prick and blood test. She ate corn a couple of times and then all of a sudden didn't want it. We had been having popcorn every Sunday after church while watching a movie and she just refused it one week. I kept eating it for a while after this and it seemed that she may have been reacting to it. It wasn't clear. I have had several times I wanted to trial her with it, but something always came up (like another food I *had* to trial or a reaction to something else). I hope that the corn in this doesn't affect her. Perhaps the endo will find it to be a good idea to supplement her with something else. I better have a list of her allergens ready.

Originally Posted by kjbrown92

I've been off corn/iodized salt for 1.5 years and my thyroid numbers are still fine, though I have seaweed in sushi every couple months, and I can eat a lot of the other sources (poultry, eggs, etc.). DD2 has been off corn for 3 years, and she's been off all seaweed for 1.5 years, though she can still have eggs and poultry too. I'm wondering if I should get their numbers checked....

You need so very little iodine I am not surprised that you don't have a problem eating the things that you do. She eats none of the iodine foods and takes no supplements. I haven't tried seaweed with her, but that would be the *only* possibility of the lists I have seen. Well, I guess I have also seen strawberries, but they are so seasonal and a common allergen.

[FairyRae]

Someone just posted a link to some yummy looking crispy seaweed/nori sheet things...Might be worth looking into.
http://www.amazon.com/Seas-Gift-Seaw...pr_product_top

Ingredients
Seaweed (Finest Korean Kim), Sesame Oil, Sea Salt.

[Therese's Mommy]

We got more of the picture today. She is deficient in Vit D and B12 and we previous found out she is slightly anemic. I was surprised about her being anemic as she does have a lot of sources of iron and also eats lots of Vitamin C, but I have now read that hypothyroidism can cause anemia, so perhaps that is how that happened.

The B12 was no surprise once I looked around on the internet. There are no vegan sources of B12. So, hopefully she can just get some B12 shots or take a supplement and all will be well there.

The Vitamin D is no surprise as she hasn't been on a fortified "milk" in several months due to the hemp milk company changing their recipe and her reacting to it and also there are no sources of it in her diet. The ped picked up some Vit D drops for her and I will start supplementing her with them today. Hopefully, she doesn't react to them He said it looks like there is nothing in them that is bad for her, but we will see. I know he checked carefully, just wondering if all the ingredients are fully disclosed.

Both Vit D and B12 deficiencies are related to hypothyroidism, so perhaps they contributed along with the iodine (I don't know the result of that test yet, the ped said it might take a week to get that one).

We don't know about the thyroid antibodies yet. Still crossing my fingers that it comes back negative.

My hope in all of this is that we will have a better picture of what we need to do to give her optimal health and when this is all done I will have a child that is healthier and feels better than ever. Also, I will now be making sure she is getting regular blood tests to look for deficiencies and I am sure her ped will be on board with that 100%.

[Wugmama]

This thread has scared the crap out of me.

[MyLilPwny]

Originally Posted by JacquelineR

Other than that, the only option I can think of is Lugol's or Iodoral.

I've been taking one tablet every day of Iodoral for maybe about a year and a half now and still breastfeeding my 2 year old. We had hair elements tests done, and my iodine level is completely normal, although her iodine level is so high that it is in the red (toxic) range. I don't understand how she has sooo much iodine (her zinc levels on the other hand are sooo low, so I just ordered a zinc supplement for her), but so now I'm stopping my Iodoral so that she doesn't get any more iodine. We both pass Cutler's counting rules, so our minerals are most likely not deranged. As soon as I get these documents scanned, I will post our hair test results (in another thread).

[Naturalyst]

About the iodized salt - dextrose is added to stabilize the iodine. Dextrose is *not* corn. It can be derived from cornstarch. But other sources include rice, wheat and other starch rich foods. If your DC is tolerating the salt, IMO, go with it. If you have concerns about the source of the dextrose in Hain's salt, call their customer service folks at 1-866-595-8917. They may know or be able to get you an answer.

As I am sure you've already learned in reading about hypothyroidism, goiter, Hashimoto's and all the other thyroid ills, the underlying cause of all is often an autoimmune issue (anti-thyroid antibodies). I mention this because it is worth considering beyond the thyroid issue. A person with one autoimmune issue is at greater risk of a having a second. There are common threads that have yet to be identified, but they are there.

Vitamin B-12 deficiency can also be caused by an autoimmune issue - pernicious anemia, where the body destroys a substance ("intrinsic factor") required to combine with Vitamin B-12 in order for it to move from the gut to the blood stream. With pernicious anemia, eating Vitamin B-12 rich foods and take oral supplements won't make much difference because it can't get past the gut. Treatment requires that you bypass the gut. Once levels are restored, a once-a-month shot will do it. For lesser problems (there are degrees, it's not an issue of having enough intrinsic factor or none at all), sublingual tablets might be enough - the Vitamin B-12 with the tablets is absorbed through the mucosa. But, the sublingual tablet dosing is less precise.

Vitamin D deficiency is also thought to have, among it's many possible causes, an autoimmune/absorption cause.

Momma, breathe. All of what you've mentioned so far is easily treated. I say this from a position of knowledge. Without supplementation, I'd be hypothyroid, anemic (from pernicious anemia) and have spongy bones (from a Vit D deficiency of unknown cause). The thyroid medication I take is a simple formula that's been in use for almost 70 years (a well understood medication with no side effects when dosed properly). I take a couple of high dose, over-the-counter, Vitamin D tablets a few times each week. And, once a month, I give my self a shot of Vitamin B-12 ... it's a tiny needle that even a whimp like me can tolerate.

Feel free to PM if you have questions and !