need advice from moms of kids with many not-serious issues

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Need advice from moms of kids with many not-serious issues

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rainbow

Sun, Dec 27 2009, 2:19 am

What kinds of nosh does he like; maybe we can find gf substitutes.

life'sgreat

Sun, Dec 27 2009, 2:20 am

gold21 wrote:

yes that is probably true. I havent had great mazal so far in finding a great doc for my son, but im still searching. 3 allergists and 2 dermatologists and 3 ENTs so far. the last ENT was great, but didnt take my insurance. bummer. dr jay dolitsky by the way, hes great! the allergists I have seen were awful, for me, and are beloved by others. now im waiting for appt with another ENT. maybe homeopath is the right route.

There are a lot of natural routes that can work, other than homeopathy.

gold21

Sun, Dec 27 2009, 2:20 am

thanks rainbow! he likes cookies honestly... not gluten free, I know.

gold21

Sun, Dec 27 2009, 2:22 am

lifesgreat, what do u mean? what other natural routes?

life'sgreat

Sun, Dec 27 2009, 2:24 am

gold21 wrote:

lifesgreat, what do u mean? what other natural routes?

There are a lot of holistic methods, chiropractors that do more than just chiropractic work etc... Explore your options. If you want to PM you, maybe I can get you some information (depending on where you live).

rainbow

Sun, Dec 27 2009, 2:25 am

Yes, cookies is a problem; as it's hard to find tasty ones. The only ones I have found that my kids like are Katz gf cookies, especially the rugelach. I get them online, though maybe they sell them in your local health food store. Their vanilla cookies are really close to the real thing.

rainbow

Sun, Dec 27 2009, 2:28 am

gold21 wrote:

also theres always this little part of me that says "if homeopathics is so awesome, why isnt it mainstream?" anyone ever wonder this? I guess im just one big nervous wreck and dont want to submit my kid to just anybody for treatment.

does homeopathic stuff contain alcohol? even a bit of alcohol can be irritating to the intestinal lining of someone who has gluten sensitivity. I have tried homeopathy and maybe because of my gluten sensitivity was unable to tolerate the homeopathy. If you do try it I'd love to hear the results!
May He grant you the siyata dishmaya and be chonen daas you in choosing the appropriate treatment for your son, and may He help that your efforts should indeed help!

ra_mom

Sun, Dec 27 2009, 2:43 am

Gold, about an allergist, have you ever heard of Dr. Ehrlich, in the city? He is just amazing. Find out if he accepts your insurance.
With dd, our GI had her tested for the celiac genetic marker. It saved us a lot of heartache b"H. (Sometimes you need to get a special approval from your insurance company to take this test because it costs extra $, but the doctor's office can take care of that for you.)
Basically the doc told us that if it came back positive, it would not mean anything, and that there would still be a 50-50 chance of her having celiac or not.
But if it came back negative for the genetic marker, it would mean that there was a 99% chance that she did not have celiac disease.
B"H it came back negative, so we didn't have to try a gluten free diet.
But really, if you get creative and prepare ahead of time, going gluten free for a while is not that difficult in today's day and age b"H.
Did you see the advertisements for the newish Gluton Free Shoppe on 16th and 39th? They have everything you can think of there.
Hatzlacha Rabba and hugs to you!

life'sgreat

Sun, Dec 27 2009, 2:44 am

Check out Digestive Wellness for some foods and stuff for celiac disease.

rainbow

Sun, Dec 27 2009, 2:46 am

I order stuff from digestive wellness and bake real good soft cookies from their nut flours.

bnm

Sun, Dec 27 2009, 3:08 am

ENT's-I tried a few, I was happy with Goldsmith, he accepts most insurances....

Allergist-didn't find one yet

allergies can be hard, you need to find the richtige shliach too. my genius of a dr figured out I was allergic to the food coloring in the Benadryl (22 years ago they didn't have dye free) and once we stopped that everything else got better. I don't think that guy is still around, his name was Dr. Rappaport, he was amazing.

rydys

Sun, Dec 27 2009, 8:11 am

I'm very confused here. How in the world did gluten get involved here? The OP clearly said that the eczema and asthma cleared up by taking the baby off of dairy. That seems like a dairy sensitivity. Why would anyone try to commit a child to a life off of gluten if he clearly has another issue?

For someone who is really off of gluten, it is not as simple as not eating bread. Most foods today contain gluten in some form. It means avoiding most packaged foods, all pasta, all bread, most cereals. For a child it means the social isolation of never being able to partake in school lunches, parties, sharing snacks with friends. All food must be cooked practically from scratch. Pesach in a non-gebrochts family is about the only time the child feels like "just another kid".

As far as testing, antigliadin antibody is not an accurate test. The current blood screening test is tissue transglutaminase. Any competent doctor knows that this is just a screening test. The only way to make a real diagnosis is by biopsy on endoscopy. The stool tests done by endolabs are extremely inaccurate. Almost everyone who sends him stool comes back positive. The man is making a fortune off of his testing, but he has no objective evidence that his testing works. I have been to his website and tried to contact him without success. I am just redirected back to his website. He has no studies on there comparing his results to more standard testing. It is all based on his own subjective results.

I know there is a tremendous movement out there which does not trust medical doctors, but does trust anyone who offers something "alternative". However, the doctors who follow up his work say that his testing is inaccurate. This makes sense, as celiac disease is a disorder of the immune system, not of the stool. Yes, it attacks the intestine, but there is nothing secreted in the stool as a result of the attack.

As far as people who claim that they see huge differences within a few weeks of taking their kids off gluten, I've never been sure it was the gluten. While it is possible to eat a very unhealthy diet off gluten, it takes work. When you take a child off gluten, by default he also stops eating most junk food and food colorings, as well as other foods. I wonder what really worked--going off gluten, or going onto a healthier diet?

If you really suspect celiac, I would not advise taking the child off gluten. When a child goes off gluten and the intestine heals, the biopsy will be normal. In those cases, the child has to go back onto gluten for a few weeks before the biopsy can be done.

In the OPs case, it seems her child clearly has milk sensitivity which she is dealing with, and may need his adenoids removed or not (maybe they will just heal as he is off dairy). The thirst could be due to the adenoid hypertrophy forcing him to breathe through his mouth.

OP, it sounds like you are doing a great job. It is a shame that your pediatrician is not helping you more, but you are definitely on the right track. Get a good ENT (I like Goldsmith or Vastola the best) who is not quick to operate and see if you can get the adenoid issue cleared up soon. Good luck!

mommy7

Sun, Dec 27 2009, 9:39 am

Enlarged adenoids is a fancy way of saying 'big bump in the back of the throat'. My son had large adenoids, and they're not dangerous, just annoying, because it prevents mucus from flowing freely. My son had tons of sinus infections, constantly runny nose and when he coughed, he used to throw up, mostly phleghm, but all the time. We were forever changing his sheets in the middle of the night because he would cough in his sleep and then throw up.

We finally had his adenoids removed (fancy way of saying, the dr. took a knife and whittled them down, nothing is actually removed like appendix or gallbladder) and OH MY GOSH, what a relief. No more throwing up, sinus infections, coughing fits. And the proceedure was covered by insurance, it was outpatient, took about 15 min, plus a while for the anasthesia to wear off. Maybe 2 hrs total.

Some ENT's have an age limit, they won't operate on a kid younger than 'X' age. Others go by size. My son was about 2 1/2 and average size.

Hope this helps.

rainbow

Sun, Dec 27 2009, 11:19 am

Often, gluten sensitivity is present in those with dairy sensitivity. As I've found in my own family. All of us don't do well on dairy and all of us have been dx'd with gluten sensitivity.

One need not do a biopsy in order to dx gluten sensitivity. None of my family did a biopsy. We got dx'd via blood or stool samples.

If in gettng off gluten one is also getting off food coloring etc. and you're questioning whether it's the food coloring/additives that may be the culprit. That is possible. Did you know that many of the food-colored items such as jelly-beans contain gluten? and licorice contains gluten as well.

Myself and many others I know lead a gf/df life-style and it is more doable than people fear.
I wouldn't recommends going gf overnight, but slowly exchanging foods over the course of time. Depending on how fast one wants to do it.

Personally, I'd want to keep my adenoids. Inflammation has underlying reasons. If my tonsils are inflamed I'd want to find out what is driving the inflammation, instead of removing my tonsils. In many cases dairy and gluten are driving the inflammation due to a whole chain reaction which I don't care to get into right now, but when I have time I may explain it.

bnm

Sun, Dec 27 2009, 11:28 am

I understand what your saying about the getting all drs together part.... my daughter has reflux and is failure to thrive, we where seeing a gastro, the pediatrician and getting her evaluated for feeding therapy on the ped's recommendation..... sometimes I felt like paying them for the hour and getting them in the same room. I wonder if that's possible.....

rainbow

Sun, Dec 27 2009, 11:32 am

I've seen EnteroLabs results that came back negative for gluten sensitivity. Of the 20 or so people I checked with only about 12 came back positive. But we're talking close to ten years ago. Unfortunately gluten sensitivity is on the rise.

I don't know when you tried to contact the owner, but when I spoke to him about 7-8 years ago he was pretty much accessible to all. He either got too busy or he's not so involved in the day-to-day operations.

I just looked up my bloodwork that was done recently, after I was given a gluten-containing drug for a few weeks:
My doc checked the following:
t-transglutaminase (tTG) IgA
Deamidated Gliadin Antibodies, IgG
Deamidated Gliadin Antibodies, IgA
Immunoglobulin A, Qn, Serum

My children don't feel diffferent in a negative way, when they take lunch to school/yeshiva. In fact, my kids are not the only ones gf and other kids ALWAYS want my kids' snack. The funny thing is my 17-yr old shared his snack with another bochur this week and the boy loved it!
My 8 year-old says the boys are always coming to him for his gf cookies!

The other kids wish they could bring their own lunches. With Hashem's help I've been able to instill a very positive attitude toward this business and it's contagious!

My kids would never want to go back on gluten because every time they cheat they get back their old symptoms.

OP, I wish you hatzlacha and may Hashem guide you in the direction that is good for you and your child.

rydys

Sun, Dec 27 2009, 11:32 am

"One need not do a biopsy in order to dx gluten sensitivity. None of my family did a biopsy. We got dx'd via blood or stool samples."

This is my point. Those who have followed up children who were dx based only on blood or stool samples have found that they are not accurate. Some of them did have celiac disease. For many, however, he diagnoses were reevaluated and found to have other sensitivities/problems which were treated without taking them off of gluten.

"Myself and many others I know lead a gf/df life-style and it is more doable than people fear.
I wouldn't recommends going gf overnight, but slowly exchanging foods over the course of time. Depending on how fast one wants to do it. "

First of all, a person with celiac disease cannot go off slowly. Even one bite of a gluten containing food will cause symptoms, which may not subside until he is gluten free for several weeks. In addition, I know many people who live real gluten free lives. While they do manage, and are quite healthy, none of them would say that it is easy. The people I know who tell me it is not such a big deal are usually not strictly gluten free as a person with celiac must be.

rainbow

Sun, Dec 27 2009, 11:40 am

I say to do the changeover slowly to make it easier on the mother. The child has been consuming gluten until now, it's not the end of the world if the child continues to consume for another two weeks until the changeover is complete.

My family lives a 100% gf lifestyle and I think the reason it's easy for us is because we're all in it together, and we understand the science behind it. My kids and myself have read lots of books (and books intended for children, to be had on Amazon or maybe the public library system) before embarking on this gf lifestyle.

May each of us follow our hearts to the path that will heal us. And may Hashem bless our efforts they should be met with success.

Happy Mom

Sun, Dec 27 2009, 12:17 pm

rainbow wrote:

Inflammation has underlying reasons. If my tonsils are inflamed I'd want to find out what is driving the inflammation, instead of removing my tonsils. In many cases dairy and gluten are driving the inflammation due to a whole chain reaction which I don't care to get into right now, but when I have time I may explain it.

Yes, exactly! If you kill the messenger - eg, remove the adenoids - the issue that caused the problem is still there and will continue to manifest in other ways in the body.

I've found a number of baked gluten free cookies in the health food store (not casein free, though). We've done a lot of experimenting with different flours to bake our own cookies/cakes/muffins - mainly nut flours and coconut flour - and it's really easy to make lots of delicious gf/cf treats. No reason for a kid to feel deprived at all.

I agree that a slower changeover to a different diet will be much more doable and less intimidating. There will be benefits healthwise even if all gluten and dairy haven't yet been removed.

amother

Sun, Dec 27 2009, 2:54 pm

I didn't read the whole thread, but it sounds like your child has Helicobacter pylori. My dd had it. I happen to have an amazing pediatrician who is also into natural medicine; he put her on a major diet for a month. The diet means no acids: no oranges, chocolate, salty, tomatoes, sugar, white flour etc. in addition she got antibiotics +acidophilus for a month.

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