Re: Starting a Gluten Free diet

[nicole s]

Thanks for reponding so soon!

 Um.....my son does not have digestion problems as far a I know , he takes all his food with no problem. He was on antibiotics when he was little for RSV and the ocassional ear infection, but not since he was like 4. I have not taken him to a specialist yet, I really don't know where to begin. This is all so much to take in. How do you even know what to test for? I notice you see a doctor in warrenville , I live in Joliet , so it's not that far from here. So if he doesnt have digestional problems is it ok to give him the gluten, but stay away from yeast? I went to the store last night and bought everything gluten free....that's not cheap let me tell ya....lol. I see a chiropractor for panic diorder and they are very educated in nutrition as well so I have already learned alot from them , so I now what to stay away from as far as sugars and artifical ingredients. This whole gluten wheat thing is new to me though. So do noodles carry gluten ......is gluten in all wheat products? If there is gluten in a product will it say gluten or is it just classified as wheat? That part confuses me.....do you have this answer?

[Caryn]

I definitely recommend getting testing done to determine if your son has food intolerances just for your own piece of mind. Many kids with tics have food issues for various reasons. Some have issues with viral and bacterial infections which also seem to aggravate symptoms. In our case it was a chicken-egg situation. Once he stopped eating the foods he reacted to he stopped getting minor infections and his immune system got a whole lot stronger.

In our case I think the tics are immune related, and I have met many others who have experienced the same type of phenomena. That is not to say that this is always true. I couldn't tell you that. I don't think anyone can.

Is ticcing something in your family, or is your son the first one in the family to get them? Do you have relatives with digestive problems or are diseases like diabetes, rheumatoid arthritis, ataxia, M.S., and Lupus common in your family? Has your son experienced problematic skin issues like eczema, itchy rashes, or an itchy bottom? These problems can all be attributed to gluten intolerance. Many, but not all folks with tics who test for food intolerances find out that they have a problem with gluten. So it may or may not be a problem. But if you have other symptoms or diseases commonly associated with gluten intolerance/celiac are prevalent in your family it may be worth a try.

Getting started on a gluten free diet isn't easy, but if it works to get your child's tics under control it is well worth it. All wheat contains gluten unless it is listed as gluten free. Even sprouted wheat has gluten. All barley, spelt, and rye has gluten as well. So does oatmeal unless it is listed as gluten free. All noodles in the pasta section of the local grocer are made from wheat flour (which means they also contain gluten), unless they have gluten free written on the packaging. You can buy rice noodles at places like Jewel and Dominicks but I get mine from Trader Joe's. I have found time and time again that Trader's has good prices on their gluten free stuff.

In our case both the gluten and the yeast were problems for our son. We don't do either, even now, except on occasion he may get something gluten free with yeast. Does your son have a white coated tongue or a red ring around his anus? If he spits in a glass and his saliva hangs in strings this could be a sign of candida overgrowth. 

You are right, gluten free packaged goods are not cheap. I have learned over time how to penny pinch and get things for cheaper. I shop at Costco a lot and buy in bulk. I get 25 lb bags of rice and 3 lb bags of nuts and grind them myself with my vitamix machine. They sell some cool snack foods for decent prices (like the fruit leathers and Mrs. Mays nut snacks). I joined Amazon prime and get many things shipped in bulk at rock bottom prices on a monthly or bimonthly schedule. I get gluten free cereals for $3 a box instead of $5 a box. I also do things I never did before, like cut the boys' hair myself.

We have tried stevia. It is hard to bake with but is okay in our breakfast smoothies. We use natural organic honey (in bulk from Costco) and have used maple syrup when it was more reasonably priced.

Milk and dairy products can also cause an increase in tics.

Here is a thread that discusses possible lab tests to consider:

http://healthy-family.org/forum/index.php/topic,8.0.html

[nicole s]

Thanks for all your help! You have been very informative   

[nicole s]

My son does have eczema, well not really anymore but did especially as a baby I needed to take him off of milk based formula. I'm going to just get him tested for food allergies at least to eliminate some of this stuff, it's so overwhelming. It's so confusing when it's time to feed him anything, I need to think about it for about a half an hour before I can even give him any options. I need to eliminate the malt, vinegar, and yeast. Not to mention he cannot have chocolate or too much sugar. This is hard, but I would do anything to make him better!

[Caryn]

Call Great Plains Laboratory and ask them what the most economical route would be in your situation. Dr. William Shaw of Great Plains is a featured speaker at the Natural Treatments for Tics, OCD, and Depression in Dallas/Fort Worth Texas this coming May. I know that the folks at Great Plains do a lot of testing for folks with tics. Based on your son's history and his symptoms they may be able to suggest labs that would give you the most well rounded picture of what is going on.

For example, low stomach acid can cause food allergies/intolerances. So could candida overgrowth or bacterial overgrowth, etc....

Here is their contact information:

http://www.greatplainslaboratory.com/home/eng/contact.asp

If you are going to do the testing you need to do it right away (since you have begun to limit his diet), or the results will be skewed. The longer you avoid the allergic foods prior to the test the less likely some of them will register as positively allergic/intolerant. For example, when we took the test through Alcat a couple of years ago my son had already been off of dairy for over a year. My pediatrician 'thought' he had a problem with dairy and so we removed it. My son's symptoms improved and so I was sure this was true (he was prone to infections-- croup, ear, you name it). We gave him dairy for 10 days before taking the test and he did not show up as having a dairy allergy/intolerance. We still limit dairy these days because I have my suspicions.

[jcastantine]

I'm new here and I'm not sure I'm doing this right, so please forgive me for my unfamiliarity...

My Son is 4 1/2 years old and in a Pre-K program a private school.  Last fall, when he was 3 1/2, the teacher and program director of his Toddler Program took me aside and told me Jackson was exhibiting behaviors that, "stand out," amongst the other students.  They suggested I reach out to the public school district where Jackson will be attending Kindergarten, which I did.  I met with the district's Children Pre-School Special Education (CPSE) program directors, and Jackson was approved for a full evaluation for behavior issues.

We went through the entire battery of intelligence, psychological, behavior and motor tests and what came out of it was that Jackson was highly intelligent, but tested in the 98% for oppositional behavior.  Additionally, he had problems with "time on task" and needed additional guidance in the classroom.  Basically, we're leading up to a ADHD diagnosis, but he's still too young for that.  He also has some OCD issues. 

So now, Jackson receives 90 minutes per day of one-on-one special education at his private nursery school through the public school district. He seems to be doing better at school with his behavioral therapist, but in the last two weeks, I've noticed that Jackson is exhibiting a facial tic.  Sometimes it's very frequent, (3-6 times per minute,) and it's almost always the right side of his face and his eye.  Sometimes it hardly shows up at all when he's really relaxed.  I took him to his pediatrician two days ago, who reassured me that lots of kids develop facial tics that go away.  She performed a quick neurological check up and he seemed fine.  However, I got a referral for a pediatric neurologist and plan to visit him, so find out if this can be Tourettes. 

Here's the thing that has be wondering if this could be dietary... Jackson is the worlds worst eater.  At this point, our options are Mac & Cheese, Grilled Cheese, Pizza, chicken nuggets (most easily eaten from McD's,) Cheerios, Cream Cheese & Jelly sandwiches, PB&J sandwiches, waffles, pancakes...  ALL contain gluten.  He easts NO fruit, vegetables or meat, other than chicken nuggets.

Is there any opportunity that I might be seeing signs of Celiac or gluten intolerance?

[Caryn]

Hi J-

Welcome to the board. Our son's story is very similar, and his diet was very much the same as your son's.

Has your son been sick in the last month? Or was he vaccinated? There have been studies done to show that ticcing is indicative of a stressed immune system. Causes vary. Exposures to lyme, step, mycoplasmas, viruses, and vaccines have been known to act as catalysts. Usually the ticcing erupts about 4-6 weeks after the exposure.

Have you had a CBC test done yet? This is a complete blood test. That was where we started three years ago. We also did a seizure test to rule it out.

Does your son have any signs of digestive trouble? Are his stools regular? Soft? Well formed? Dark colored? Or are they unformed, or constipated, or infrequent? Is his tummy often bloated? Does he seem to belch a lot during the day?

Are there dark circles or red circles under his eyes? How does he sleep? Is it hard to get him to go down? Does he wake often in the middle of the night? Is he a bed wetter? Does he frequently urinate during the day? Does he crave sweets? Does his handwriting fluctuate dramatically from day to day for no apparent reason other than a change of diet?

What color is his tongue? Does it have a white coating on it? How does his breath smell? Does he have white spots on his nails? Does he chew them?

If you find yourself answering yes to many of these questions then I would suggest you take your son to a gastroenterologist first and get some testing done for digestive disorders. 80% of our immunity is housed in our gut. Both bacteria and fungi can cause neurological symptoms. The causes are many, and it is possible that celiac is a cause but it is also possible that it is not. Even if your son is not celiac the heavy wheat, yeast, and corn diet your son is on could be contributing to yeast/fungal overgrowth and that could be creating mycotoxins that are affecting his central nervous system. My son has been on a gluten free and antifungal diet for 3 years now. He no longer has ADHD symptoms or any OCD tendencies that we saw emerging at the age of 4. I understand where you are coming from because we were right there too. Our son tested out as extremely intelligent and was an early reader but could not focus in class or do simple fine motor tasks. It was very frustrating. He has done fantastic catch up with both fine and gross motor skills. Plays all kinds of sports now and has perfect handwriting. I believe the diet was and remains a key factor in his recovery. We do not see a neurologist at all anymore. No one ever suggested we see a gastroenerologist in the beginning and I wish they had.

If you decide to go that route there are things you can do to help him while his body slowly recovers. Various supplements can help lessen symptoms and help him focus.

All the best--
Caryn

[smileg8]

Ok so my story is very similiar to many of the other's written on this forum. I appreciate having a forum like this and hearing about stories that can so relate, but at the same time it also makes me feel overwhelmed and frustrated while reading all of these stories and all of these different options etc. Please help me. I feel like I am going crazy. My son started his tics when he was 4. He started with a wiping of his forehead and over the past year has gone on to all different ones. They come and then go pretty quick but onto the next tic. He is def worse when we walk into school or when he is in a higher anxiety sitation. We are now doing gluten and dairy free. I feel like I am at a point where I am strong enough to commit to this diet plan, I just need some more hope. Or i need a direction. I have had him allergy tested through the pediatrician and it came back with nothing. He is not ADHD at all. He really has no stomache issues. He is a great sleeper and doesn't seem to have trouble falling asleep. I would say he is def a bit more careful than the average kid and he def feels a bit of anxiety around lots of people or new people, otherwise I think he is a pretty "normal" 5 yr old. Please give me a direction. I am so happy for those that have "figured it out" but I also feel so jealous and I would just do anything at all to make this go away. Sorry for rambling, Please help!

[Caryn]

Smileg8,

Was the allergy test an IgE test? That will find immediate food allergies and are usually associated with hives, congestion, asthma type symptoms. The other kind of allergy test is the IgG food intolerance test. This looks for delayed food intolerance. There are many instances where both tests can be performed on the same child and the results will vary, so there is controversy over the validity of each, particularly the IgG, which can be contaminated with mold (fungi) and cause reactions in the patient who has mold sensitivities. There is no standard for food allergy testing, actually, and the experts now claim that more than one test should be performed to verify whether or not there truly is a food allergy/intolerance. Many old school doctors will insist the only way to truly know is to do an elimination diet. We only did an IgG test on our son and used the results to create a special diet for him that also included 'best practice' methods from Sheila Rogers book on natural treatments for tics, tourette syndrome, and OCD.

Our biggest trigger food was corn. Although the IgG test is controversial, I felt that it was instrumental in our case with finding out about the corn intolerance and then researching how to eliminate it from our son's diet.

A good place for you to start is a gluten-free and casein-free diet. But I would also cut out all processed junk foods and high sugar products too. Many of these kids have bacterial or fungal infections. Sugar feeds both. In our case the diet we used was an anti-inflammatory one-- and we didn't do it consciously at the time. But I believe that it really helps. Some find that they can't do soy either. We never made soy a major staple in our house but we never totally eliminated it either.

Now my son is completely healed and hasn't had tics in over two years. We had a major gastrointestinal disease and symptoms of intestinal damage before his chronic multifocal tic disorder onset at age 3 1/2. I believe that the strict diet was instrumental in healing his gut, even though the neurologist thought I was wasting my time trying it.  He now eats a varied diet that includes many of the foods he once had to avoid or would cause ticcing symptoms, but for him the healing process took almost 2 years. If you go this route do not expect a miracle recovery. It will take time. Just have faith, and patience, and perseverance. We still avoid processed foods, high fructose corn syrup, corn syrup, gluten, and artificial colors, flavors, and preservatives. We avoid GMOs like the plague too. We try to eat organic as often as possible. We no longer vaccinate because we had vaccine injuries with two of our three children. I had 13 metal fillings while pregnant and nursing and the doctor feels this may have contributed to their conditions (mercury vapors from old cracked fillings). At onset my son had flushing (which can be a sign of metal toxicity I recently read). Flushing is when they get periodic red cheeks and ears that are hot to the touch. We noticed it with certain foods. It lasted many months as an intermittent symptom that we never quite found an 'exact' cause for, and appeared immediately after preschool vaccines for both our boys when they were the exact same age and only DAYS after the DTaP shot. Both conditions waned after about 9 months and while on a special restrictive diet and supplement regime. We used high antioxidant supplements. We also used high doses of Omega 3s. Buy only the best, most pure fish oils or do flax oil instead.

Don't overwhelm yourself and don't lose your confidence in yourself either. You know your child more than anyone else does. Think of this problem as a giant jigsaw puzzle that you have to piece together one section at a time. What works for someone else on this board may not work for you. That is the mystery of this diagnosis. But the things I mentioned here are pretty common things that many parents have used successfully to help lessen their child's symptoms successfully.