Monday, July 11, 2011

Ben Age Two: Tests, Tests and more Tests!

In order to get the best idea of what's going on inside of Ben we had a lot of tests done. We sent his urine to France where peptides were detected for both dairy and wheat. These peptide levels showed us that whenever Ben consumed dairy or wheat the partially broken down proteins would enter his bloodstream and leave in his urine as peptides, which can act as opioid or morphine like drugs in Ben's body. This explained why Ben didn't seem to respond to pain like a "typical child" and showed no awareness to entering a hot jacuzzi or cold pool and would "zone out" and sit in a "fog" like state. These peptides showed us that these foods physically made him high. Children get a fix from this high which is why they go through such horrible withdrawals when you remove these foods from their diets and they have to detox.

We sent Ben's blood to Alcat laboratory in south Florida to determine which of the 75+ foods / additives in a "wellness panel" that Ben was sensitive to (he showed an intolerance to 23 foods, as well as Penicillin and red dye). We sent multiple stool samples (first collected and frozen or stored in special vials at room temperature with special solutions to keep bacteria from dying) to The Great Plains Laboratory in Kansas, where we learned that Ben's good bacteria levels were low (some were completely wiped out from all the antibiotic abuse) and one strain of a "dysbiotic" or "nasty" bacteria as Dr. Udell called it, was monopolizing his entire gut flora. In that test we also learned that his immune system was very compromised as his IGA levels were far below normal. The last test we sent away for was a stool and saliva test kit to Enterolab in Texas. This test was able to identify intolerances to wheat, dairy, soy and egg (probably the white in the egg since the Alcat test confirmed a sensitivity to the egg white but not the egg yolk). This test measures the body's IGA levels against these food proteins and any time the body produces a response greater than 10 the lab determines this to be considered a food intolerance.

I'll just copy and paste the results here because it's a little difficult to paraphrase:


"B) Gluten/Antigenic Food Sensitivity Stool/Gene Panel (this was the test kit we ordered)

Fecal Anti-gliadin IgA    114 Units   (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA    24 Units   (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA    16 Units   (Normal Range is less than 10 Units)

Fecal Anti-soy IgA    39 Units   (Normal Range is less than 10 Units)"

The first one, the one measuring Anti-gliadin IgA is for gluten in case you weren't sure what that word meant (because I didn't) and is clearly showing an intolerance to gluten / wheat, which Ben's probably been making since birth which is why the number is so great.

So I spoke with the nurse at Enterolab and the doctor about these numbers (and taking into account what I learned from reading the Gut and Psychology Syndrome) it became very apparent that with the high wheat values most likely gluten was the first food protein Ben became intolerant to (or was born intolerant to) and as he kept creating IGA responses to it his immune system became over-responsive / sensitive and started tagging other food proteins with similar molecular structures (soy and dairy) and once the immune system is so active it becomes a snowball effect and just keeps on tagging foods.

According to what I understood from the GAP book, the walls of Ben's gut no longer have the good bacteria keeping it healthy, creating a barrier so that undigested food proteins won't enter the blood stream. If this barrier is thin / weak any food which he eats will not only not get broken down properly but these malabsorbed / digested proteins will leak through the lining of his gut walls and pass into the bloodstream, where his white blood cells attack these proteins and "tag" them as foreign invaders since they aren't supposed to be in the bloodstream. Then a signal is sent to the immune system to keep a record that every time this food protein enters the body the immune system should create a defensive response. Many individuals who have a food intolerance may not know they have one until they give up that food they are sensitive to and see the changes in their bodies (allergy / sinus symptoms, cramps, headache, fatigue, bone / joint pains, even things like infertility can be cleared up once a person avoids the foods that their body is intolerant to and gives the immune system a chance to calm down).

The nurse I spoke with when ordering this test and the nurse and doctor I spoke with discussing the results of the test spoke in depth about how children with gluten intolerances can have neurological problems when gluten remains in their diet. Children that suffer from ADD, ADHD, Autism, Schizophrenia, OCD, and Epilepsy might benefit greatly from being on a strict gluten free diet. Over 50 years ago the term "bread maddness" was coined after recognizing that some individuals would suffer from schizophrenic episodes after consuming bread. In the 1920's the Ketogenic diet was created for the only known treatment for children with Epilepsy, and surprise surprise this diet consists of a high fat, moderate protein and very low, very specific carbohydrate diet. I could go on and on about how our diets and the foods we eat affect our body's and brains, but that's not what this blog is about. I can't convince you or anyone to determine which diet is healthy or best for you or your family. I can only share what I have learned about how diet affects my family.


Our hope is that by removing the offending foods from Ben's diet we will give his digestive track a chance to heal and seal the gut lining, and by adding plenty of beneficial probiotic supplements and naturally fermented foods (yogurt / sourkrout / pickles, etc) his gut will start digesting foods properly and we can one day reintroduce some of the 23 foods on his intolerance list without them causing an immune response.

The saliva portion of this test was very interesting for me because it looks for gluten sensitivity genes, genes that are passed down from either the mother or the father or both parents. As it turns out, Ben had two copies of the same gene, which means he got one from both me and Nick. After much talk with the staff at Enterolab, I learned that the HLA-DQB1 0301 gene that Ben received from both me and Nick, this particular gene especially, has been determined to cause neurological and developmental delays.
HLA-DQB1 Molecular analysis, Allele 1    0301

HLA-DQB1 Molecular analysis, Allele 2    0301

Serologic equivalent: HLA-DQ   3,3  (Subtype 7,7)
The last portion of the test counted the fat molecules in his stool, which was collected over a period of three days. In this test we wanted to learn if Ben was absorbing fat. If he wasn't able to absorb fat (which is the easiest / first thing the body will absorb) then we'd have malabsorbancy issues which lead to malnutrition if his body can't absorb other nutrients. The results are below:
Add Fat Malabsorption Stool Test (Fecal Fat) to panel A, B, or C
Quantitative Microscopic Fecal Fat Score    Less than 300 Units   (Normal Range is less than 300 units)
 


Good news! Ben showed less than 300 units of fatty molecules in his stool so his body must be absorbing fat, and if he's able to absorb fat then he should be absorbing other vitamins, nutrients and minerals as well.

Although we did this test almost 2 months ago, I just want to add in this post that during this time Ben was hovering around 25 lbs. Over the course of the next 2 months, after going gluten free, soy free, casein (dairy free) and many other things free (apple, potato, most carbs, etc) Ben actually GAINED 5 whole pounds and is currently a beautiful 30 lbs (as of July 2011). I was so scared that if I took all of my rice products which replaced the gluten ones (crackers, breads, muffins, flours, cookies, pretzels, etc) out of Ben's diet that he'd lose even more weight but after reading my GAP book and speaking with Dr Udell I realized that Ben might start absorbing foods better once the bad fungi and bacteria die off. This is when Ben started growing (like he was still wearing size 18 month shirts /shorts and even some 12 month size shirts at age 2.5) and jumped into size 2t and 3t and his shoe size went from a 6 to an 8.5 in the past two months once changing his diet. I'll get to the mental growth in future posts...

Some might argue that diet doesn't affect the body or mental state. I like the argument that asks you to go drink a bottle of liquor and tell me what you consume doesn't affect you. Some might argue that my son would have "outgrown" these food sensitivities over time and maybe, after a year and a half of vomiting on a daily basis, his body might have just accepted the foods we fed him but I challenge that maybe he would have continued to shut down both physically and mentally. To those who argue that monitoring diets based on food sensitives is dangerous and it's better or healthier to ignore the lab results and continue on eating the traditional American diet, I'd like to point out that I'm not asking you to change your eating habits, just don't push them on my kid. I've had some very strong advice from concerned loved ones tell me that removing wheat is "dangerous" and from a Neurologist that a GF/CF diet hasn't been proven to treat Autism. I say test your theories on your own kids / patients, go ahead and do nothing, and see what happens. No offense to you if you happen to fall into any of these categories, and I'll respect those parents who chose not to change their child's diet, but PLEASE, allow me to TRY to help my kid by changing his diet. Some personalities are pro-active and when it comes to my child's health I can't just sit by and do nothing. Whether it's been proven to help or not I need to try it. As I told my sister in law weeks after first implementing a GF/CF diet, "Even if the only thing this diet does is resolve Ben's vomiting issue, then it was worth the change." For the record, it's been 5 months since my son has thrown up and that's the longest stretch he's gone since he was exclusively breastfed.

My point in sharing this post with you is to encourage you to look into all the many, many tests available and see which might best assist you with learning your dietary needs / challenges. These tests are costly, and most likely not covered by insurace so really do your research so that you can get the most knowledge from any given test. Also, when it comes to diets, I've learned that if parents with a child on the ASD are willing to try a gluten free diet most of them are unsure about the Specific Carbohydrate Diet and are afraid to give up all their gluten free carbohydrate replacements. What helped me was knowing that eventually, if I could really give Ben's body the best chance at healing and getting strong, then eventually he could eat these foods again, but I had to at least try and give this diet all I could, to give Ben the best chance of recovery, if such a thing were really possible.

As always, please speak with a qualified professional before purchasing or running any medical tests or making any decisions concerning your health or the health of your family.

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