The Discovery

I decided to start a blog to share with my friends & family (and anyone else who cares to read it) my thoughts, experiences & the things that I have learned in the last few weeks & ongoing during this new journey. I know this first entry is going to be really long because it's got to cover so many things. This is day 19 of starting the gluten free diet. I've already made mistakes & learned many things & I want to share it all with you. Before I start, I want to make it clear that I am not going gluten free because I want to lose weight, or because I woke up one day & thought it would be fun to try. I am doing this because I believe that I have Celiac Disease & eating gluten makes me sick. 

I guess I'll start at the beginning. During the last week of October my mom read an article in the Modesto Bee about a lady that was having a lot of medical problems. She'd been to various doctors & nothing was helping. Her symptoms really got worse after she had her first child. Turns out she finally discovered that she had Celiac Disease. My mom thought that she sounded just like me. I wasn't too sure but I figured the least that I could do is research it. Initially I was confused & not too sure that was my problem but the more I read about it the more it made sense. All these different puzzle pieces throughout my life actually fit together & made sense. I was so excited & emotional at the possibility that I had finally found my answer after all of these years. 

Here's some explanation on what Celiac Disease is, followed by some of the various symptoms:

Celiac Disease is an inherited autoimmune disease where the body cannot tolerate gluten. Studies estimate that 1 out of 133 Americans have Celiac Disease. When a person with Celiac Disease ingests gluten the body attacks itself damaging the villi in the small intestine. It will also then lead to dairy intolerance because the villi are what break down lactose. With the villi damaged or destroyed the lactose passes to the large intestine causing a lactose intolerant reaction. Lactose intolerance isn't the only issue due to the damaged small intestine. It also causes many nutrients not to be absorbed. Aside from the initial symptoms directly caused by the disease over time it can lead to a wide variety of more serious diseases & disorders. An untreated person with Celiac disease has an increased chance of gastrointestinal cancer by a factor of 40 to 100 times that of the normal population. Studies also show that gastrointestinal carcinoma or lymphoma develops in up to 15 percent of untreated celiac patients.

The Celiac Disease Foundation, found online at www.celiac.org have a great list of the symptoms but I'll just copy them on here & include a few additional notes at the bottom.

Celiac Disease can appear at any time in a person’s life. In adults, the disease can be triggered for the first time after surgery, viral infection, severe emotional stress, pregnancy or childbirth. CD is a multi-system, multi-symptom disorder. Symptoms vary and are not always gastrointestinal (GI). GI symptoms can often mimic other bowel disorders.

Infants, toddlers and young children with CD may often exhibit growth failure, vomiting, bloated abdomen, behavioral changes and failure to thrive.

CLASSIC SYMPTOMS MAY INCLUDE

• Abdominal cramping, intestinal gas
• Distention and bloating of the stomach
• Chronic diarrhea or constipation (or both)
• Steatorrhea – fatty stools
• Anemia – unexplained, due to folic acid, B12 or iron deficiency (or all)
• Unexplained weight loss with large appetite or weight gain

OTHER SYMPTOMS

• Dental enamel defects
• Osteopenia, osteoporosis
• Bone or joint pain
• Fatigue, weakness and lack of energy
• Infertility – male/female
• Depression
• Mouth ulcers
• Delayed puberty
• Tingling or numbness in hands or feet
• Migraine headaches

SOME LONG-TERM CONDITIONS THAT CAN RESULT FROM UNTREATED CD

• Iron deficiency anemia
• Early onset osteoporosis or osteopenia
• Vitamin K deficiency associated with risk for hemorrhaging
• Vitamin and mineral deficiencies
• Central and peripheral nervous system disorders - usually due to unsuspected nutrient deficiencies
• Pancreatic insufficiency
• Intestinal lymphomas and other GI cancers (malignancies)
• Gall bladder malfunction
• Neurological manifestations

I would like to expand on the Neurological manifestations for a moment. What that means is that it can cause things like anxiety, depression, mood swings etc, but it can also lead to nerve damage. 

Webmd.com also has a small section that I would like to point out, many are the same as above but with more descriptions.

·  ·  Easy bruising: Lack of absorption of vitamin K can lead to diminished ability of blood to clot and hence to easy bruising or excessive bleeding.

·  Peripheral neuropathy (nerve damage): Vitamin deficiencies of B12 and thiamine may contribute to nerve damage with symptoms of poor balance, muscle weakness, and numbness and tingling in the arms and legs.

·  Infertility: Untreated celiac disease can lead to infertility in women, lack of menses (menstruation), spontaneous abortions and low birth weight infants.

·  Muscle weakness: Lack of absorption and low levels of potassium and magnesium can lead to severe muscle weakness, muscle cramps, and numbness or tingling sensations in the arms and legs.

"if untreated, childhood celiac disease can result in short stature as an adult. As children with celiac disease enter adolescence, many will experience spontaneous remissions (reduced symptoms) and remain free of the signs and symptoms of celiac disease until later in adulthood. This later reactivation can be precipitated by stress such as pregnancy or surgery."

If you know me well you can probably see where I started to put some pieces of the puzzle together. Until I read this last part I was still somewhat unsure because it's inherited. I was trying to figure out where it may have come from. My father's side of the family is notorious for having many medical conditions & other problems. They are also pretty short. I believe my Dad is actually the tallest member of his immediate family at about 5'5". I am only about 5'3" and I am easily taller than my grandfather which puts him at very short. My grandmother's family is littered with medical problems, however they were generally taller people. Unless everyone got tested there is no way of knowing exactly where it came from. At least two of the people on my dad's side have several of the symptoms above so it led my mother & I to believe it was fairly likely this was my problem. 

I pointed out all of those symptoms above because once I knew all that it explained so much, leading all the way back to Junior High. I fell often in elementary school, though most of the time from what I can remember it was usually stepping in gopher holes on the soccer field. By Junior High however, it became more frequent that I would sometimes fall for no real reason. I also started having really bad headaches & migraines. 8th grade (roughly 1997) I fell fracturing a bone on the top of my left foot. My migraines got worse & worse. I was often sick to my stomach from it, I could no longer run or jump without tremendous pain or becoming sick. I saw doctor's, saw a neurologist, had a CT scan etc. The neurologist had me diary food to see if something in particular was triggering it but he only talked about things like caffeine & chocolate. We found no real relation to anything. I was on medication after medication. Sometimes it'd help for a while, then it wouldn't make a difference anymore so I'd switch to something else. 

The migraines & falling continued through & past high school. It was somewhere around 2003 or so that my migraines finally seemed to mostly go away. I might have one or two every once in a while but previously I had a severe headache or migraine almost every single day. I never really put it together until now but after the migraines went away I started to develop this weird anxiety. I started to freak out about being around a lot of people, especially people I didn't know. I didn't want to make phone calls, order food, etc. All these crazy things that I never used to have a problem with. 2006 right before my 1yr anniversary I fell & broke my left ankle. Somewhere around 2007-2008 I started having fairly severe mood swings & bouts of depression. I was diagnosed with bipolar 2 disorder. Meaning something like I wasn't like a typical bipolar but I had some of the symptoms, though less severe. I started seeing a therapist & taking medication. Things seemed to improve though I still had the anxiety.

In 2008 after trying for 3 years I finally became pregnant. I stopped taking all medication. My doctor was somewhat surprised that off the medication I was doing great, he imagined that I would need to be on medication for the rest of my life. While I was pregnant I felt pretty good. Of course I was tired etc but I didn't get sick the entire 9 months. I'm also talking the cold or flu kind of sick. Most of my life that I can remember if anyone around me got sick, I always got sick. For once I wasn't getting sick. It was great.

After my son was born I started to have lots of GI problems. I had heartburn, indigestion, and mostly diarrhea. When the symptom above says "chronic diarrhea or constipation (or both)" they aren't kidding. The symptoms got worse & worse for me until it was mainly chronic diarrhea. You may wonder how you could have both but sometimes it can start out one & end up the other. Not a pleasant thought & not something I really like to talk about but it was my first obvious symptoms that something was going on. I went to the doctor, had some different tests run, saw a specialist, had a colonoscopy & they found...nothing. So since they couldn't figure out what was wrong they diagnosed me with IBS. The IBS diagnosis is very controversial. Many people (medical & otherwise) say that IBS is the diagnosis they give when they just don't know what is wrong. I honestly believe that is the case with me. That appears to be the case with many Celiacs as well.

So what's the treatment for IBS? They told me to take a lot of fiber supplements & try to avoid things like caffeine & alcohol. I did all of that for a while but I still had the problems. For my severe pain that often had me curled up & rocking, nearly screaming? Oh here, take this pill when you have the pain. Problem with that? Of course it didn't work right away so I'd still be in so much pain for at least 30min to an hour. In the last 3 weeks before I went gluten free I felt so incredibly horrible. I was in the bathroom so much. I was so exhausted, I ached all over, I felt like my brain was in a fog & I would feel nauseous or sick a lot. 

Obviously I continued to fall after my son was born. On March 16, 2010 I stumbled stepping down off a curb, landed standing on the pavement with my foot pointing sideways. I basically snapped my leg off right above the ankle. That was about my 5th or 6th fall in 5 months. Surgery & months of therapy etc followed. I've been walking & driving for a few months now thankfully. After all this falling we starting thinking something had to be wrong with me. We pushed my ortho & finally he ordered a vitamin D test. He said often if your vitamin D is low it can cause balance issues. Depending which scale they go by normal range is 30-60 or 40-100. I came in at 30. I was prescribed a supplement of 50,000 units a week. A month later I was only up to 32, the next month I was up to 40. The doctor wanted me to get to 60 at least so he decided to have me take 100,000 units a week. On 11/1 my vitamin D finally came back at 68, after about 6 months or so of taking supplements. 

When I started reading all the symptoms regarding low vitamin levels, specifically low vitamin D, potassium & magnesium it all kind of made sense. From 2 wks prior to my son's birth up to my leg break I was hospitalized 4 times in less than a year. Every time that they checked my levels I came back with low potassium & magnesium & had to get supplements through IV while I was there. 

Now the GI problems are pretty horrible & disturbing but for the girl who ever since she was little just wanted to grow up, get married & have children this part is probably the worst. Fertility issues. Thankfully I have not had to go through the pain & loss of losing a child like many women with & without celiac disease have. Now, however, when we really started to try to have another child I started having more obvious fertility problems. It did take us 3 years of trying on our own to get pregnant the first time but we wrote it off to a side effect of being on birth control so many years (one of the things they prescribed to try & control my migraines). Now that I'm having more obvious problems, it seems likely that it was not the birth control that made it so hard. I had already started to work with my OB on a plan before I found out about Celiac Disease. I just finished 6 weeks of birth control to try & get my hormones under control & on Monday I start taking clomid as part of fertility treatments. 

So...now for what happened once I made the connection. I went to my doctor's office & asked for the blood test to check for Celiac. They did that & ran a full work up on me. They suggested that after the blood test I try going gluten free to see how I feel. Since the only treatment is to go gluten free it would be a good indicator. They didn't tell me that the test has a high false negative rate. I found that out on my own through more research & reading. They could also do a biopsy of the small intestine to look for damage but even on gluten it also has a high false negative rate. I started going gluten free after I took the blood test which would mean that if I wanted to do the biopsy I would have to eat an equivalent of 4-6 slices of bread a day for 6 weeks before the biopsy. I'm tired of tests, tired of doctors etc. I just want the light at the end of the tunnel! I want to get better! 

They say that if you have the GI symptoms you're more likely to notice an improvement with those fairly quickly after going gluten free. Thankfully, I did. I also found that large amounts of dairy made me feel ill so I cut most of that out as well for now. I am hoping that eventually I will be able to return to dairy once my small intestine heals. Now, I had read that even something as small as using the same kitchen utensils you use on gluten items & then using on gluten free items can make you sick. At first I thought, how is that possible? It seems crazy. Even still I have tried to be very careful. Last Friday I was obsessing about making sure my husband didn't cross contaminate me when we had hotdogs & ended up cross contaminating myself by dipping into the mayo jar. The same mayo jar we always dip in & spread onto our bread. I didn't realize it at first even though I had even read about making sure you have a gluten free mayo jar, peanut butter jar, etc. After dinner I started not feeling very good. We checked the mail & got my results. They were negative, as I somewhat expected them to be. I had told myself that I wasn't going to give up if they came back negative. I was going to stick with the gluten free diet for a while to see if I felt better. Since I had already seen improvements I wasn't going to let it get me down. Well...it did get me down. I started feeling slightly depressed & doubting myself. Maybe I hadn't found my answer since I was not feeling good after dinner & I couldn't think of any gluten I had. Then suddenly I realized what I had done with the mayo jar. I almost started crying. I was amazed that I had done that without thinking about it. I was amazed that just that could make me feel sick. I am thankful for that mistake because it taught me a lot.

Though I do not have an official diagnosis I still believe that I have Celiac Disease. My mother & husband both believe the same thing. As far as we are concerned the evidence is there. I have many of the classic Celiac symptoms & in the last 19 days that I have been on the diet I have felt GREAT! I have so much more energy, my mind seems more clear, and....except for the two times when I had too much dairy, I have had no more diarrhea! I am not 100% better, I still have a long way to go. My journey is just starting but I am so happy & excited that finally after all of this, I have an answer. It's not as convenient and easy as taking a pill or having a surgery, there is no treatment other than going gluten free. The good thing is that pills & surgeries always have side effects & risks but going gluten free doesn't. The only side effect is that you should eventually get back to a healthy weight. Whether you were an underweight or overweight Celiac, in the end you should get back to healthy. I have already lost 10lbs. I have a lot more to go to get back to healthy but I'm so excited. I could never do a "lose weight" diet. Never had the motivation. A solution to all of my problems though? That's all the motivation that I need. 

I have so much more to say & share but I will stop this first post here. I want to share my story & journey with you. With a 1 in 133 rate out there this makes it a very common thing. I can't be 100% sure of this because I don't know where I read it but I believe that I read somewhere that Celiac Disease is the most common genetic disorder. I hope to help educate my family & friends, but ideally to help educate as many people as possible. I've always had a lack of motivation in many things but I have finally found some motivation & I hope to inspire & motivate you.