Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

So More Doctor Fun...
0

12 posts in this topic

Well I am a bit annoyed because I was not there for this...but ah well that is the drawbacks of a working man...

ANYWAYS the we choose this doc (pediatrician) when we moved here BECAUSE she is knowledgeable about gluten, autism, and other areas that we are concerned about. So far she has not steered us wrong, and she is highly respected here in town.

So my wife saw her today and dumped everything that has been going on with the allergy doctor, the conflicting test results, and all that. (She had to bring Timothy in for a persistent sore throat, not planned trip)

Doc said...(and some of what is on the notes she gave my wife heh)

1) Gluten is bad in his case, don't care what his test results are, keep him off it.

2) Keep him off Dairy (he has has both neg and positive test results to dairy)

3) Get some probotics - next to it has "refrigerated - immune/allergy+GI" ???

4) Get some stuff called "D-HIST Orthomolecular" ????

5) Give him Vit D3 - 1000IU

6) Give him Omega 3 (with Nordic Naturals and Carlson listed next to it) ????

She also wants to get him off the chewable singular he is on (he loves the taste of it) because it contains aspertian (sp?) which she hates. She also wants him to go up to 10mg from 5mg on that.

The thing with dairy she said was that if you are dairy free when tested you have a better chance for a false negative. Same with soy.

We are still waiting for the blood test results from the last round of testing with the allergy doctor, so nothing to add from that yet.

Next week is Timothy's already scheduled well child visit so I plan to ask more questions (since I have scheduled time off to be at that one), but what do you non-doctor-parent types think of what she said? I know nothing about "D-HIST" or the other things with ?'s.

She did send a nutritionist into see my wife too, but she said pretty much what anyone could guess. More natural, unprocessed foods and less junk. I don't need a MD to figure that out, what I need is foods that I don't have to beat my son daily to get him to eat. :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

We use Custom Probiotics and within 3 days of starting them my son had normal BM's for the first time in his 4 year life. They are refrigerated, gluten, dairy, and soy free. Pretty much everyone in the US needs Vit. D. The claims of the D-hist are not very scientific from my knowledge for foods. Maybe for environmental but not food allergies. NOTHING but time and avoidance can help food allergies. Sounds like you are working with a holistic ped, yes?

I am sure this ped is great...but she isn't an allergist. I am trying to remember all the parts of your story but I have never heard of allergies to dairy being different if you are on vs. off it at the time of testing. I think I said this in your last post, allergy testing (when positive) is only 50% accurate. A negative is 90%+ accurate. The true test of ANY suspected allergy is a oral challenge. If you are getting positive and negative tests on dairy, I would ask the allergist for an in office challenge. What reactions are you seeing from dairy?

Why the troubles feeding him? Does he have aversions to textures? Are there other issues besides those listed? What foods is he missing that you need to duplicate?

1

Share this post


Link to post
Share on other sites

We use Custom Probiotics and within 3 days of starting them my son had normal BM's for the first time in his 4 year life. They are refrigerated, gluten, dairy, and soy free. Pretty much everyone in the US needs Vit. D. The claims of the D-hist are not very scientific from my knowledge for foods. Maybe for environmental but not food allergies. NOTHING but time and avoidance can help food allergies. Sounds like you are working with a holistic ped, yes?

He has a lot of environmental allergies too and the current anti-histamines seem insufficient. I think that the D-Hist is for them, and not the food stuff. He currently has clogged ear, post nasal drip, and etc.

How expensive is that Custom one? Is it easy to find?

How are you delivering the Vit D? Separate pill, or?

I am sure this ped is great...but she isn't an allergist. I am trying to remember all the parts of your story but I have never heard of allergies to dairy being different if you are on vs. off it at the time of testing. I think I said this in your last post, allergy testing (when positive) is only 50% accurate. A negative is 90%+ accurate. The true test of ANY suspected allergy is a oral challenge. If you are getting positive and negative tests on dairy, I would ask the allergist for an in office challenge. What reactions are you seeing from dairy?

He has 1 positive scratch test for dairy, 1 negative scratch test, 1 negative blood test,plus negative for casian and lactose on scratch test. I suspect dairy is an issue currently because when he was off it he started getting better. When we tested with it.. he was fine for about a week, then his GI issues started to return. Such a slow return is making it a bit hard to pin point exact cause.

Why the troubles feeding him? Does he have aversions to textures? Are there other issues besides those listed? What foods is he missing that you need to duplicate?

My guess is he has had so much bad history with food reactions (since birth) that he just now has a new-food-phobia. We have to force him to try anything new at all, and he almost always says he does not like it.

Think I answered everything? :D

0

Share this post


Link to post
Share on other sites

:) I think I got it ;)

Custom Probiotics seems pretty price up front (I think it was about $50-60 for the 6-strain we have) BUT it is 1-2 small scoops a day so our bottle lasted 6-8 months for 2 kids under 5. I think when I worked it out it was about $10/month which is pretty standard for a good probiotic. They are mail order and he only ships something like Monday-THursday so they don't get stuck in the postal system. If you contact him, he usually sends out a sample (which lasted for about a month for us). DS never had normal BM's even 3 months after going gluten-free. Like I said, within 3 days it was totally normal! Amazing stuff really!

We do Vit. D drops. The European medical machine suggests 4000 IU for adults, 2000 IU for kids and 1000 IU for babies under 1. We use Xymogen drops (1000 IU per drop).

If he isn't reacting with anaphylactic type issues and you are seeing issues arising from a diet including dairy, I say yeah, keep him off! Maybe try in 6 or 12 months.

How old is Timothy? I know my kids at 5 and 3 are creatures of habit. They eat the same things pretty much daily. I know i have been told a few times to look at his diet over the course of a week not in a day. I know mine have better days and not so not days but over time it seems to even out. DS was slowing down greatly on the weight thing and we went to 4 meals a day and added 1-2 cups of chocolate hemp milk daily and he's finally putting on some weight.

We are gluten, dairy, egg, soy, peanut, tree nut, banana and blueberry free here. If there is anything you think he would like that you aren't finding options for, I am here to help if I can!

Don't you wish these kids cam with directions? It would make life so much easier!

1

Share this post


Link to post
Share on other sites

I can help with #5 and #6.

#5- Vitamin D3 is a teeny tiny pill separate from the multi-vitamin, but if you are trying to keep him soy free you might need to search a bit. I use Leader brand vitamin D3 because it is soy-free. It is a 1000mg tablet.

#6 Carlson Nordic Omega 3- This is fish oil, easily found in any health food store. I also take this one.

The other things I do not know about, but I would agree with keeping him off of gluten and dairy because you have seen good results with that. The thing about food sensitivities is they can be delayed reactions making it really hard to tell what is bothering a person and what is not. But then, I think you already knew that. :)

1

Share this post


Link to post
Share on other sites




:) I think I got it ;)

Custom Probiotics seems pretty price up front (I think it was about $50-60 for the 6-strain we have) BUT it is 1-2 small scoops a day so our bottle lasted 6-8 months for 2 kids under 5. I think when I worked it out it was about $10/month which is pretty standard for a good probiotic. They are mail order and he only ships something like Monday-THursday so they don't get stuck in the postal system. If you contact him, he usually sends out a sample (which lasted for about a month for us). DS never had normal BM's even 3 months after going gluten-free. Like I said, within 3 days it was totally normal! Amazing stuff really!

Do you have a link?

We do Vit. D drops. The European medical machine suggests 4000 IU for adults, 2000 IU for kids and 1000 IU for babies under 1. We use Xymogen drops (1000 IU per drop).

Where did you find them? Do you drop them in his mouth, or would they go in his drinks?

If he isn't reacting with anaphylactic type issues and you are seeing issues arising from a diet including dairy, I say yeah, keep him off! Maybe try in 6 or 12 months.

So far it appears all his food issues are GI ones.

How old is Timothy? I know my kids at 5 and 3 are creatures of habit. They eat the same things pretty much daily. I know i have been told a few times to look at his diet over the course of a week not in a day. I know mine have better days and not so not days but over time it seems to even out. DS was slowing down greatly on the weight thing and we went to 4 meals a day and added 1-2 cups of chocolate hemp milk daily and he's finally putting on some weight.

On the 13th, he turned 9. :D He is our lucky baby! :D (there is two stories behind that.. but for a different thread/time)

We are gluten, dairy, egg, soy, peanut, tree nut, banana and blueberry free here. If there is anything you think he would like that you aren't finding options for, I am here to help if I can!

Don't you wish these kids cam with directions? It would make life so much easier!

Well his birthday party is Saturday, and we rented a local Karate dojo for it. They do bunch of fun stuff with the kids, and he gets to cut his cake with a real samurai sword! :) Baking a cake is easy, but they also provide pizza. They have no microwave/etc, so need to bring him something to eat while the rest of the kids eat pizza for lunch. Fortunately he is fine with eating his own food no matter what anyone else has, probably a side effect of his food-phobia :) Just need to figure out what to bring, that will surive the trip and storage and does not need to be cooked. Esply since we are currently on no mammal meat diet to test an allergy to that. That means no pork, beef, venison, etc. But birds and fish are fine. At least they are today!

0

Share this post


Link to post
Share on other sites

I can help with #5 and #6.

#5- Vitamin D3 is a teeny tiny pill separate from the multi-vitamin, but if you are trying to keep him soy free you might need to search a bit. I use Leader brand vitamin D3 because it is soy-free. It is a 1000mg tablet.

#6 Carlson Nordic Omega 3- This is fish oil, easily found in any health food store. I also take this one.

The other things I do not know about, but I would agree with keeping him off of gluten and dairy because you have seen good results with that. The thing about food sensitivities is they can be delayed reactions making it really hard to tell what is bothering a person and what is not. But then, I think you already knew that. :)

Not sure we have ANY health food stores here. Well there is one called "Fresh Air" (which btw stinks of perfume and incense) but its a tiny dirty hole in a wall place. I live in a largish town, population 60k, but its a college town so the population is pretty transient and poor. Not much in the way of fancy stuff.

Does Amazon carry this stuff? I shop about 1/2 to 3/4ths of everything non-grocery that we buy there cause can not usually find it in town.

Thanks!!!

0

Share this post


Link to post
Share on other sites

http://www.customprobiotics.com

Looks like he's going on vacation on the 23 so maybe see if you can get a sample ASAP to start trying?

Vit. D I usually just drop on his tongue. I have added it to food but as with any med, I put it in the smallest amount of food I can get away with so I am sure he gets the whole dose. I order it from Amazon. You can get Nordic Naturals there too.

When you want to share, I would love your story on your lucky baby ;) I am sure I have one I can share too. Another time and thread as well ;) lol

How much gluten-free baking do you do? I have a pretty good pizza recipe if you are interested. It can be a little hard to follow if you aren't baker (I am working on fixing that). Diaya "cheese" is a good sub for dairy free cheese.

My kids just started karate this month. I was just talking to DH about how a party there would be great for them! They have them from 2-4 for I can easily do cake and no one would expect more because of the time frame! Anyway, if you are interested in the pizza recipe, let me know.

PS- I assume that the reactions that you are seeing are not dramatic from dairy? I only ask because we deal with something called FPIES which is a totally GI mediated reaction to foods but is dramatic.

0

Share this post


Link to post
Share on other sites

:) I think I got it ;)

Custom Probiotics seems pretty price up front (I think it was about $50-60 for the 6-strain we have) BUT it is 1-2 small scoops a day so our bottle lasted 6-8 months for 2 kids under 5. I think when I worked it out it was about $10/month which is pretty standard for a good probiotic. They are mail order and he only ships something like Monday-THursday so they don't get stuck in the postal system. If you contact him, he usually sends out a sample (which lasted for about a month for us). DS never had normal BM's even 3 months after going gluten-free. Like I said, within 3 days it was totally normal! Amazing stuff really!

How are you feeding him the probotics?

0

Share this post


Link to post
Share on other sites

I added it to a small amount of water and added some Torani raspberry organic syrup to it. I have taken it and it is gross alone.

0

Share this post


Link to post
Share on other sites

I added it to a small amount of water and added some Torani raspberry organic syrup to it. I have taken it and it is gross alone.

Would it mix well with his Coconut milk?

0

Share this post


Link to post
Share on other sites

Yeah. Just put it in as little as you can to be sure he gets it all. Also, in think they are best taken 30 minutes prior or 30 after a meal. I can't remember 100% but I think that was what we did. We started with once a day and moves up to two for a while and back to one time daily. Now it's when I remember ;). Three kids will do that to a Mom :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,883
    • Total Posts
      919,473
  • Topics

  • Posts

    • I'm actually scared to go to the doctor and could use some advice
      Well, if I were you, I would go see your doctor and talk to him/her about all this.  Tell your doctor about your anxiety. When I finally did, my doctor prescribed a low dose of an anti-anxiety med and it has made a world of difference in my life.   About the whole thing with the B12 and the weird symptoms . Keep taking the B12 in the meantime to see if that helps again. But talk about it anyway.  If you want a celiac test, ask for the panel to be done. Your doctor may or may not want to send you to a GI for that. Remind him your mom is being tested. You do not have to wait for her results.  Work with your doctor if possible and if not, maybe find a doctor you can work with. If all you end up needing is b12, that's a good thing. If you end up needing more help, starting with your doctor and a heart to heart Talk will have you going in the right direction.
    • gluten free, oat free, egg free breakfast ideas needed for 6 year old
      If she misses the hot cereal then try quinoa or amaranth as an alternative to oatmeal
    • I'm actually scared to go to the doctor and could use some advice
      I suspect I am dealing with vitamin deficiency, but I'm afraid that if I go to a specialist they're going to think I have MS. As a person with pretty bad health anxiety, I can't bring myself to make the appointments I know I should make. I presented to my GP about 9 months ago with fatigue and a bizarre tingly feeling in my lower left leg. I was also suffering digestive distress, but I've lived with that off and on my whole life, so that was the least of my worries. My blood tests showed that my B12 level was 280. They didn't turn up any other issues, but then again she did not order any other vitamin level tests, only thyroid and routine bloodwork. She called my B12 level "on the low end of normal" and put me on oral supplements. When we retested 6 weeks later, it was 1100 and she told me to drop it back because that was too high and too much B12 can cause health issues, too. I'm confused by that because I've read that it isn't possible to take too much. I started a new career in a new town, and simultaneously began to feel better. The fatigue went away first, followed by the tingling and other stuff. Still plagued by both extremes of digestive distress. Maybe I should also mention that I was diagnosed with GERD at age 29 and have been on PPIs for 10 years. At that time, nobody ever mentioned investigating my GERD at such a young age, just put me on the pills and said stay on them. A gastroenterologist concurred after a very brief office visit. Well, I can be bad about taking my medicines, so I got off the B12. I figured maybe my earlier issues were stress-related. Now my symptoms are back, but worse. I have tingling and some aching in the leg. I have a sensation in one spot on my upper arms like the skin is burning, but no rash or redness. I have the C extreme of digestive problem, only alleviated by taking lots of magnesium citrate capsules. Sometimes I feel easily chilled, like waves of goosebumps. I am working to get off the PPIs in case they are inhibiting my absorption of vitamins. My mom has had really bad IBS all her life, plus eczema, headaches, etc. I'm back on the B12 for about 5 days but have experienced no relief yet, however I do remember that it took about 2 months to feel better the last time. Getting ready to move, on top of being really scared about these health issues, is making me crazy. I'm only 40 years old!!! Here are my questions: 1. Do I go back to the GP and ask her to order a celiac blood test? I know NOT to go off gluten until I am tested. 2. Do I ask for a referral to a neurologist or gastroenterologist instead? 3. Do  I wait until my mom's gastro appointment next month, when she plans to ask for a celiac blood test? See if hers is positive? 4. Do I keep driving myself insane with the worry that I have a degenerative illness? Can anybody identify with any of this at all? 
    • Eeek confused! Positive biopsy, negative blood test???
      I would hope they would check for the other reasons for the endoscopy results.  A GI might not check for all of those so you may need to check with your regular doctor to start that process.
    • Depression / anxiety issues
      The second link I gave you was to a series of online video courses, you can try those for free to see if its something you think might help. There are also a lot of worksheets you can download, the first link had some I think but there are plenty of others out there if you search online.  Finally I had another look and found this: http://www.getselfhelp.co.uk/step1.htm  Which looks like a decent 7 step program Obviously its not as good as a dedicated session with a CBT counsellor, but the above may give you some tools you can use, especially when your thoughts are spiralling into a destructive circle. You could also search to see if there's any group sessions in Melbourne, that's how the NHS delivers it, they would be cheaper and there's really no need for one on one CBT, because it's more about delivering knowledge of the toolset. I approached it very sceptically but found it of some use, although at the time I was still under the gluten influence so it never tackled the root problem. The game changing aspect of discovering this is that you now know why the psychologist sessions didn't hit the mark, how could they when the root of your depression was your illness? My sessions now are far better and more enjoyable than when I was under a gluten fog.  Aside from all this the other advice holds, eat well, exercise, get sunlight every day and the longer you're on the diet the better you should get.  Oh and at least NI put up a hell of a fight in the Euros, hope you got to see that down under!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,929
    • Most Online
      1,763

    Newest Member
    Timea
    Joined