Safe for Celiacs?

When we discovered that my wife and daughter were gluten intolerant (celiac), we knew our lives were going to change significantly.  The idea of giving up bread and other wheat products was difficult, especially since we made our bread, pancakes, and other items from scratch using 100% whole wheat flour that we ground ourselves.  My wife and I both grew up in families where this was the norm, so changing our eating habits so drastically seemed overwhelming.  However, the thought of my wife and daughter finally being healthy gave us the motivation to try.  Here’s the story of our journey…

As I mentioned, my wife grew up in a family where they ground their own wheat and everything possible was made from 100% whole wheat flour.  For most people this is an ideal approach because whole wheat is so good for you, however, unbeknownst to my wife or her family, wheat wasn’t healthy for her body.  The doctor who finally diagnosed her said that most likely she started out with a strong sensitivity to wheat that over time developed into full-blown gluten intolerance.  From her early childhood she dealt with many dental problems and her physical growth was always on the lower end of the charts.  She was lactose intolerant, suffered as a child from frequent migraines, and often dealt with stomach aches but couldn’t seem to pinpoint the food(s) that caused them.  By the time she was a teenager she was dealing with a variety of digestive disorders as well as some growth-related issues and very irregular menstrual cycles.  As she grew the digestive disorders became gradually harder to deal with, and other problems began to pop up.  By the time we were married she had nearly 40 fillings in her permanent teeth, dental enamel problems, thyroid problems, was on medication for depression (which was supposedly linked to her thyroid not functioning correctly), IBS (misdiagnosed, of course), constant stomach aches and intestinal bloating and gas, iron deficiency, dry eyes and mouth, almost constant headaches and very frequent and debilitating migraines, irregular menstrual cycles, etc.  Within a few years her night vision deteriorated to the point that she could no longer see well enough to drive at night, and she was also dealing with infertility and miscarriages.  She went to various doctors as we moved around, but to no avail.  She felt certain that somehow all of her ailments were related, but even when she provided doctors with a complete list of these ailments they insisted on looking at them individually.  Little did we know that she could have been a poster child for celiac.  (Gluten intolerant individuals often have widely varying symptoms from one another, and some have few or no symptoms at all.)  It wasn’t until moving to our current location and finding a doctor who diagnosed our oldest daughter that my wife was also diagnosed.

Our oldest daughter, Samantha, started dealing with intestinal and digestive issues very early on.  She didn’t start solid foods until she was six months old, and within weeks was dealing with very severe constipation.  Her bowel movements changed almost overnight from 3-6 soft movements daily to one rock-hard bowel movement once every two weeks or so.  Her movements were so hard that she couldn’t get them out unless we undid her diaper; they didn’t mush up in the diaper like you would expect.  She would scream and cry when she pooped and we were very alarmed.  My wife took her to the doctor (happened to be an intern at an Air Force medical facility) who said, “Don’t worry, she’ll be fine.  It’s really not a big deal.”  He then proceeded to ask if she was reading to Samantha every day.  What does that have to do with anything!?!.  Jen was furious, but figured she wasn’t going to get anywhere with the intern.

Upon arriving home, she called and made another appointment with a different doctor the next day—and insisted that I go with her.  (While it shouldn’t make any difference, it often helps to have the active duty military member there in uniform…just one of those things.)  So back we all went the next day, and we were pretty blunt that we knew there was a problem and wanted them to figure out what was going on.  This time they did an enema and the pediatrician said he couldn’t believe how backed up she was; that she eliminated as much fecal waste as an adult would.  It was shocking!  After clearing her bowels he put her on a prescription for Miralax (at that time it was prescription only) and told us that some children just have a harder time working things through, but that she would grow out of it in a year or so.

As it turns out, that was only the beginning.  For the next six years we went from doctor to doctor, from one specialist to another as we moved with the Air Force from one assignment to the next.  Each doctor said the same thing: “Put her on Miralax for a year and after that she should be fine,” or “Put her on Miralax for a year and then come see me if you still are having a problem.”  We were extremely frustrated that not a single doctor seemed to care that she had already been on Miralax for several years with no change whatsoever in her situation.  In fact, she was worsening.  She dropped off the growth charts when she was less than a year old and was always extremely bony with an enlarged stomach.  She looked like a starving child from a third world country.  In fact her abdomen was hard and swollen to the touch and she couldn’t bend and play like other children; it hurt too much.  As she got older she got paler and more sallow looking, and close friends commented that she was sickly looking.  She couldn’t sit through a meal without getting up several times to go lie down because her stomach hurt and she never seemed to have the energy other children her age had.  When her back molars began to come in they were full of cracks and holes that were perfectly visible to the untrained eye.  These were molars that were supposed to last her through her adult life, yet the dentist said if she was lucky they would last for a few years.  We became more and more concerned for her health, and more and more frustrated with the doctors we were seeing.  No one seemed to care or take an interest in her situation even though we explained that this had to be something more than childhood constipation.  We knew it was not her diet.  She is the best eater; loves vegetable and like I said, we ate whole wheat everything. I’m sure these doctors were doing their best, but it seems most doctors are not trained to consider celiac or food allergies in these kinds of situations.

In the midst of this we decided to get out of the Air Force so that I could pursue a PhD.  After moving to Utah so that I could attend school out here, my wife took our daughters in for their regular yearly check ups.  Once again she expressed our concerns about Sami’s situation, but this doctor actually took notice.  She palpitated Sami’s stomach, decided it was definitely abnormal, and sent her for an x-ray.  We had wanted to have this done for a long time, but no one had been willing.  Upon seeing the result of the x-ray, the x-ray technician sent us straight back to the doctor (this was all in one building).  The doctor looked at the x-ray and wanted us to go straight to the emergency room.  She said Sami’s intestines and colon were so swollen and enlarged that they looked like they could explode literally at any time.  Only after we assured her that Sami’s stomach had been like this for years did she decide we didn’t need to go.  However, the combination of a good, concerned doctor and an alarming x-ray got us on the short waiting list with yet another pediatric G.I. specialist.  (The regular pediatrician who had ordered the x-ray was honest enough to say that while she knew something was definitely wrong, it was out of her league.)  So off we went to yet another specialist with high hopes.

Unfortunately, this specialist turned out to be no different than the others.  He barely glanced at the x-ray and then proceeded to recommend Miralax for a year before coming to see him again.  Like the other specialists, the explanation that she had already been on it at that time for six plus years fell on deaf ears.  However, he did give me some coupons for children’s laxatives and a very detail lesson on how the colon was just inherently sluggish and that with a high-fiber diet and sometimes intervention with a laxative that everything should be just fine.  To say we were frustrated doesn’t even cover it.  We truly had no idea what to do; we just knew something was wrong.  The Miralax kept her from needing constant enemas, but it clearly wasn’t fixing the problem.  Rather it seemed like we were putting a bandaid on the situation, and her health was failing.

It was a few months later when we were over at the home of some new friends we’d met in Utah that we were given the name of another doctor.  His office was about an hour away and our insurance wouldn’t cover the visit, but she highly recommended him so we decided it wouldn’t hurt to try.  Upon arriving at the office we realized the doctor was a chiropractic physician with many additional specialties.  I had never been a real big fan of chiropractors.  So we were a little taken a back, but decided to go ahead with the appointment.  This was our introduction to a more holistic style of medicine with a focus on proper nutrition, and it did seem a bit strange at first.  After we explained her situation, the doctor tested her for allergies.  It turned out that she was gluten intolerant and because of that had developed several additional allergies (secondary allergies).  In addition to gluten she was allergic to dairy, eggs, boysenberries, papaya, watermelon, lettuce, broccoli, etc.

He prescribed an elimination diet for a couple of months along with several nutritional supplements and digestive enzymes.  He also had us massage certain pressure points daily and treated her for some low lying infections.  We left the office somewhat unsure of what to think—it hadn’t been what we had expected—but very optimistic that we found the root cause and a viable treatment.  OK, basically we had nothing else to go on and my daughter’s health was deteriorating.

So, we faithfully stuck to the elimination diet, which wasn’t easy for a seven year old, and made sure she got all her supplements.  We looked up celiac online and saw that many of the random assortment of symptoms match her condition, so that gave us hope that this might actually work.  To our astonishment, we began to notice positive results over the next 2-3 weeks.    Her bowels started to really empty out and instead of always being painful for her, her bowel movements became softer.  This happened even though we stopped giving her the Miralax.  She no longer had to spend hours on the toilet to work something through, either.  As the weeks went by her stomach started to look a little smaller and became more malleable.  She seemed to get a little color in her cheeks and her appetite was slowly growing as well.  She began to sit through entire meals without needing to go and lie down.  As the weeks turned into months and we continued to keep her off of gluten and the other foods she had developed allergies to, her health got better and better.  Eventually we were able to see all of her ribs (her stomach had always been so swollen that you couldn’t see all of her ribs—almost like a pregnant woman’s) and her stomach eventually flattened out and became normal feeling and looking.  She lost her pale, sickly look and became an energetic, happy child with more energy than we could have imagined.  Over time she lost most of her secondary allergies (the only food issue that remains besides her gluten intolerance is her lactose intolerance, and that is easily remedied with raw milk, to which she has no allergy or reaction).   It has now been a year since she was diagnosed and we are still amazed by her progress.  She has gained approximately five pounds and grown several inches in the last year—a HUGE record for her!  While her body is still not producing all the digestive enzymes she needs, the doctor feels that her body will eventually.  We feel so blessed to finally know what is going on.  For those of you familiar with celiac you know the increased risk of cancers and other illnesses related to untreated or undiagnosed gluten intolerance, as well as the many other health problems.  We are truly grateful to finally have her on the road to better health.

Now back to my wife…after Sami was diagnosed we ended up having the rest of the family tested for allergies as well, since celiac is often hereditary.  It came as no surprise that my wife is also celiac with several other secondary allergies, and was also dealing with some thyroid issues.  She has been gluten free for almost a year now and is feeling much better.  Her stomach aches and digestive issues have disappeared, her once almost-constant headaches and frequent migraines are very rare now, and approximately two months after going on the gluten-free diet she was able to get pregnant and is due in about a month.  What a blessing!  She is also on quite a few nutritional supplements for celiac and her thyroid and says she feels better than she has in years.  There is no way to know with certainty when her gluten intolerance set in, but in looking back over the years, she feels like it was probably in her early childhood.  We are so grateful to have finally come across a doctor who took the time to really listen and then find out what was wrong, and if there are any of you reading this in need of a good doctor in Utah, we would be happy to pass on his name and contact information.  We highly recommend him!

This rather lengthy chain of events led me to do some of my own research on celiac and what types of grain those with celiac can eat.  One day, I ran across an article that mentioned some interesting studies that have been done in other countries relating to Einkorn, which is an ancient variety of wheat. Some of these studies indicate that people with celiac might be able to safely eat.  Naturally, this was very interesting to me since my wife always made her own whole-wheat bread from freshly ground flour.  Baking with other grains has turned out to be quite a challenge, and while she is finding some success with certain combinations of gluten-free flours, she feels like the nutritional quality is still lacking.  So, I continued researching Triticum monococcum (Einkorn in German) grains and decided to share what I’ve learned.

We have yet to have my wife and daughter try Einkorn, but plan to do so after consulting with our doctor.   I’ll let you know how it turns out…