In light of Dr. Peter Osborne’s (of the Gluten Free Society) and Dr. Charles Parker’s (of Corepsych), 7 part (so far) series discussing the impact of gluten on the brain and nervous system, I thought I would share the story of my oldest son and my husband in hopes of helping others that may be struggling to find out what has been causing their own, often mis-diagnosed, neurological symptoms.
I initially wrote this story out to share on Heidi’s amazing blog, Adventures of a Gluten Free Mom. She wrote a wonderful post that shared her long, thorny path to diagnosis and asked for others to share their stories as well. The reason I feel so prompted to share our family’s story on my own blog now(even though I normally do not share information about my children) is that my son’s path to diagnosis was not that of a “typical” diagnosis, as described in any common medical textbooks (which I believe all need to be changed, by the way). In fact, it was actually his neurologist and a very persistent mommy that finally led first to my son’s diagnosis of Celiac Disease, and then ultimately to my husband’s.
My son’s story began about 5 years ago. He had just turned 1 and barely weighed 18 pounds. I had suspected something had been going on for months. He seemed so ill and frail at the time, yet doctors always had one excuse after another for his lethargy, paleness, distended belly, stomach aches, canker sores, joint pain, constipation, dark circles under his eyes…. (I could go on and on, but I will digress). I spent hours doing my own research and concluded that there was a strong link between his symptoms and his gluten consumption. I approached his GI doctors and they continued to tell me over and over that he was just a picky eater.
I was so frustrated. I started pushing for further blood work and was able to convince his doctor to run a Comprehensive Metabolic Panel in addition to a CBC w/diff w/plt. When his results came back, all of a sudden his doctor’s stopped look ing at me as the crazy hypochondriac of a mother. However, it was not Celiac Disease at this point that they thought he had.
Many of his numbers were very askew, but the one number that stopped them dead was his Alkaline Phosphatase levels. They had come back at a level of 5050 IU/L. Here is the scary part: the normal range for a child at his age is: 104-345 IU/L. The lab actually retested the results 3 times to make sure that it was not an error.
“The alkaline phosphatase test (ALP) is used to help detect liver disease or bone disorders. In conditions affecting the liver, damaged liver cells release increased amounts of ALP into the blood. This test is often used to detect blocked bile ducts because ALP is especially high in the edges of cells that join to form bile ducts. If one or more of them are obstructed, for example by a tumor, then blood levels of ALP will often be high. Any condition that affects bone growth or causes increased activity of bone cells can affect ALP levels in the blood. An ALP test may be used, for example, to detect cancers that have spread to the bone or to help diagnose Paget’s disease. This test may also sometimes be used to monitor treatment of Paget’s disease or other bone conditions, such as vitamin D deficiency. If ALP results are increased but it is not clear whether this is due to liver or bone disease, then tests for ALP isoenzyme tests may be done to determine the cause. A GGT test and/or a test for 5′-nucleotidase may also be done to differentiate between liver and bone disease. GGT and 5′-nucleotidase levels are increased in liver disease but not bone disorders.”
All of a sudden, Celiac Disease was the least of our worries as the doctor started talking about the possibilities of bone or liver cancer. I will not go into all of the details of that time period, mainly for lack of space here, but needless to say, it was a sickening experience. My poor little 15 month old was put through so much blood work and endless tests. After ruling out certain cancers, they started to investigate all sorts of bone and muscular disorders. Everything continued to come up negative.
And yet, there was still this nagging feeling inside of me that Celiac Disease could still be a possible cause behind all of his abnormal results. I already knew enough about it at this point to believe that Celiac Disease can mess with everything in your body because it literally destroys your ability to absorb nutrients. And as I researched more, I found many medical studies pointing to Alkaline Phosphatase levels as an indicator of possible Celiac Disease. I literally had to beg them again to do another Celiac Panel AND run the genetic tests for the genetic marker for the disease. This time his Panel came back, in the words of the medical professionals, as “Inconclusive”. But he did, in fact, have one of the genetic markers for it (HLA-DQ2). Yet still the doctors did not think that this had anything to do with his insane lab results.
They were WRONG! I immediately went home, took him off gluten, and then watched my son live life again!! He became the toddler that I knew had been hiding behind those dark-circled eyes. His energy came bouncing back (literally) and his appetite, weight, height, and coloring just took off. He got back his sparkle.
And, 3 (gluten free) months later, when we did his next round of blood work, his Alkaline Phosphatase levels were down to 576 IU/L. And 2 more (gluten free) months later, they were down into the normal range at 319 IU/L. His intestines were starting to heal! He was finally absorbing his nutrients again. And, after meeting with an endocrinologist and naturopathic doctor, we finally concluded that his Vitamin D levels had been so low due to lack of nutrient absorption – resulting in the horrible levels. (Side note-he now gets major Vitamin D supplements daily, along with additional Magnesium, Calcium, Vitamin C, a Super Multi, Liquid Minerals, Probiotics, Emulsified fish oils, and, on occasion, Zinc and some intestinal healing herbs).
The funny thing is that his GI doctors never officially diagnosed him. It was not until about 1 ½ years ago, when he woke up vomiting on a couple of different occasions, that my pediatrician decided to order an EEG for him, for precautionary measures. We were absolutely floored when the results came back showing that he was having seizure activity in his sleep. After a nerve-wracking MRI and a CAT scan to ensure that there was not a brain tumor that was possibly causing this seizure activity, his wonderful neurologist finally concluded that he had a typical EEG pattern of a patient with Celiac Disease. This pattern is actually caused by Calcium Deposits in the brain that occur over time from the leaking of nutrients (such as Calcium) into the blood from the damaged intestinal walls. I just find it so strange that it was his neurologist that actually gave us the final diagnosis.
And after my post of my son’s story on Heidi’s blog, Dr. Ron Hoggan, author of Dangerous Grains, posted a comment to it that really made me feel good about the nutritional supplement path that we are now on:
“Hi Kim. Rude et al have repeatedly reported magnesium deficiency as a factor in celiac related calcium metabolism errors. It might be useful to look into this issue, or even try supplementing with Mg.
The way I arrived at the correct dosage for myself is by increasing my Mg supplements by 50 mg. each day unitl I developed diarrhea. I cut back by 50 mg. and that is the dosage I take. With your son, you might want to start at smaller doses.
The magnesium supplements have had an enormously positive impact on my life.
I believe that many physicians don’t keep up with celiac disease because they view it as a trivial food allergy and do not believe it is a very meaningful factor in “more important” findings such as abnormal liver enzymes. Many of them imagine that reactions to gluten will be obvious to parents and/or those with symptoms.”
Today, my son is finally thriving. He is a super healthy, happy, rarely sick (only 1 cold and no flus this winter), full of energy, too-smart-for-his-own-good almost 6 year old.
And now my husband also has an official diagnosis of Celiac Disease. I will not go into his story so thoroughly, but I will say that his diagnosis finally gave him the understanding of why he had suffered from intestinal distress for so much of his life. And after he was gluten free for about a month, he realized that the “brain-fog” that he had described to me for years had disappeared (and now he knows when he gets “glutened”, because it comes sneaking back). We have since realized that his Celiac Disease was most likely to blame for his blanket diagnosis of Attention Deficit Disorder that he had received when he was in college. Today, I think that he feels like a new person, and I can definitely say that he looks like one! Going gluten free, without any other lifestyle changes, helped him to lose 15 pounds, just like that (lucky little stinker).
Our family is now LIVING gluten free. I am gluten free (and pretty grain-free) by choice because I just feel so much better that way. And, although my youngest son has never had any digestive, allergy, or neurological issues (really, he is as healthy as a horse-and eats like one, too), he is totally gluten free as well. I always hate it when I tell people that my son and husband have Celiac Disease and I get looks of total pity. I do not want anyone to feel sorry for something that I feel is a blessing. I honestly believe, with ALL OF MY HEART, that what IS the story of our family’s diagnosis is the best thing that has ever happened to our health. We have been placed on a path that has changed the way that we look at food forever. We eat so healthy now because being gluten free means that we can eat loads of fresh veggies, fresh fruits, greens, organic meats and whole foods (that do not come from a box) without ever having to read a label. And how often can you boast that your 5 year old will eat an entire plate of organic greens without even blinking an eye?
The bottom line is that you have to fight for what your gut feelings are. You have to fight for yourself and fight for your kids. We are just on the cusp of big developments in Celiac Research and hopefully stories like these will not be the norm anymore!
If you have a story about your path to being gluten free (whether it is due to Celiac Disease or a gluten intolerance) that you would like to share, I would love for you to do so here. Maybe, by showing physicians the real life stories (not “textbook” stories) of people whose lives have been changed forever by going gluten free we can help to change the way they look at these “Dangerous Grains”. We are a community that can have a very powerful voice! Let’s start shouting!!!