The Book That Changed My Life – How I discovered I had Celiac Disease

First of all, it still seems really weird to say I have “Celiac Disease.”  It still seems completely intangible that I have such a serious disease, despite all the symptoms that are gone now, how much I feel better and how awful I feel if I get even the tiniest bit of gluten.  My hopes for writing this post is that it helps someone out there ask the right questions and get diagnosed easier and faster than I did.

The Book That Changed My Life and our Family

In March of 2011, after having 3 kids, like most mom’s out there, I wanted to get back, or close to, my pre-pregnancy weight.  I had gotten there before getting pregnant with our 3rd child, but this time it was even harder so I looked for something new while trying not to use just a ‘fad’ diet.  After researching a lot on the Internet, I kept running across the same theme.  That it’s easy to lose weight if you control your insulin and the easiest way to do that is to control your carbs.  I don’t even remember how, but I stumbled upon the book The Primal Blueprint by Mark Sisson.  I had just gotten a Kindle for Christmas so I was very much into reading books again so I thought I’d give it a try.

I found that this book was so easy to read and really spoke to my Engineering mind on why you should control your insulin levels, why you should avoid processed foods, why you should exercise regularly, etc.

I was able to quickly adapt the guidelines in the book and I immediately stopped eating so many processed foods.  In particular, I stopped eating a lot of processed carbohydrates.  After a few weeks of eating less carbs and less processed foods in general, I noticed my constant Allergies were getting better, my Asthma was also getting better.  I was immediately losing about 1-3 pounds a week.  About a month later, I was able to start weaning myself off of my Allergy meds and Asthma meds!  This was amazing since I was on over $400 worth of meds a month across 4 different types of meds!

Mark’s philosophy is very realistic.  He realizes that you can’t be perfect 100% of the time when eating.  He mentions many times that as long as you eat properly 80% of the time or more, you will get a lot of benefits of not eating processed foods.  It also is good for you mentally to not have to worry 100% of the time on what you eat.  For example if you go to a party, he doesn’t want you to stress about what you eat, but still eat reasonably.  As long as you follow the 80%+ rule you will see great benefits.

So what I did was every Friday I’d treat myself to a local Italian sandwich shop.  I’d get my favorite sandwich for lunch every Friday.  The more and more I ate properly the other days of the week, the more it was apparent that I felt terrible after lunch on Fridays and I slept almost all weekend and general felt like I had the flu, including ‘bathroom issues’ all weekend.  My sinuses would also clog up as well all weekend.

This combined with any other time I had something with wheat in it, I had the same issues.  It became apparent that every time I ate wheat, I felt really sick.  As I naturally do, I started researching what might cause this.  I don’t even remember specifically coming across Celiac disease but I did and started to get suspicious.  I had never noticed issues when eating wheat before, but I had never been not eating wheat.  I had it regularly, every day, sometimes multiple times a day.

Trying to get a Diagnosis the First Time

A few months after I had stopped eating wheat, I brought this to my Doctor and she had me get a blood test for gluten intolerance.  Unfortunately, I was probably 90% gluten free at this point and my blood tests came back negative.  I still suspected something as I just knew how badly I felt when I ate wheat.  She suggested if it did bother me, that I naturally shouldn’t eat it, but she didn’t think I had Celiac’s disease since my tests were negative.

A few months later I visited my Allergist and let him know that I was able to go off all Allergy and Asthma medicines.  His breathing tests confirmed it.  We decided to do food allergy testing and everything came back negative.  He decided that I had an intolerance to wheat.

Getting Fed up with Still getting Sick

Probably 6 months later after my food allergy testing, I was getting fed up with still getting sick and not sure why since I was avoiding all wheat.  I decided one Sunday at lunch in January of 2012 to eat Barley soup.  I was determined to figure out if it was wheat, or all gluten.  After several bites, my stomach started hurting, I kept eating though just in case I was imagining it.  I stopped before I ate 1/2 a bowl.  I just couldn’t eat any more.

I seemed OK at first other than my stomach not feeling well.  A few hours later I started throwing up and having violent diarrhea.  (Sorry if that’s TMI!)  I was sick for about 3 days after this.  It took what seemed like forever to stop feeling bad.

I considered this might be a one time thing, or that I might have just been getting sick already.  But I decided to start eating everything gluten free just incase.  I had less and less ‘random’ issues once going completely gluten free.  Every time I had digestive issues, I would go back and look at what I ate and the ingredients and find that they had a hidden gluten in them or they had gluten and I didn’t know it.  One weekend it was simply mini Milky-ways!  Who would have thought that they have malt flavoring in them!

How it Changed our Family

Since I was finding I was so sensitive to gluten, even a tiny crumb of bread would set me off, I discussed this with the children’s pediatrician.  We decided that it made sense to get blood tests for all three of them since gluten sensitivity and Celiac Disease runs in families.  To our surprise in November 2012, our oldest tested positive for gluten antibodies!  Keep in mind the kids really only ate gluten at Lunch at this point since breakfast and dinner was gluten free usually because of me.  He did not have positive ‘anti-self’ antibodies, so it wasn’t clear yet if he had Celiac Disease or not.  Apparently Children’s immune systems are not mature enough yet sometimes to start producing the anti-self antibodies (which is a higher indication of Celiac Disease, rather than just gluten intolerance).

Having him test positive for gluten antibodies helped diagnose me further since that showed it may run in the family.  In December 2012, we went to a Gastroenterologist who diagnosed me with Celiac Disease simply from my symptoms alone.  He wanted to do an endoscope test on our oldest, but we had to put him back on gluten first.  He had been off of it for about 1 month at this point.  We found though that every time he ate a small amount of gluten, that he had ‘bathroom’ issues as well!  He previously had no noticeable symptoms before.

We decided as a family that since he had symptoms when eating it, to not put him through that procedure since it was apparent that gluten was making him sick as well.

I was so thankful that I figured out my issues so we could get our oldest diagnosed a lot earlier in life!  Now we are both healing and both feeling SO much better!  Read below about our symptoms and why our home is now gluten free!

Related Reading:

Why make your home Gluten Free?

My Celiac symptoms that I didn’t know I had

My Son’s Celiac Symptoms that we didn’t know he had

My Son’s Celiac Symptoms we didn’t know he had

Our oldest didn’t have any symptoms at the time of testing for Celiac disease.  It was a complete surprise that he tested positive for gluten antibodies.

Symptoms He No Longer Has

  • Weak Fingernails
  • Yellowing teeth

Symptoms He Has Less Often (usually only when he gets gluten)

  • Headaches
  • Tiredness
  • Stomach Pains
  • Diarrhea
  • Migraines

For him, his symptoms were more apparent after we took him off gluten.  The two main issues he had were cavities and weak fingernails!  I lost track of how many cavities he’s had.  Looking back, it makes more sense now since both are a sign of malnutrition, which is a major side effect of Celiac Disease.  We just thought he had weak teeth in general and that his weak, pealing nails were just normal for him.

About 3 months after he was gluten free, he was trying to cut his fingernails and had to ask for help.  It was only then that I realized how strong they now were and that eating gluten had effected them so much!  Previously he was able to cut them with baby fingernail clippers.  Now he can’t!  They don’t bend, they don’t peal.  It’s amazing and exciting to see this outward and visible sign of his healing!

I also had worried previously about how yellow his adult teeth were.  Now that he’s off gluten they are whitening up!  I knew adult teeth were not as bright white as baby teeth, but his looked more yellow than they should.  This was another exciting revolution.

Now also when he eats gluten, he gets stomach pains and has what we call ‘bad poops.’  It also seems to trigger headaches as well.  He gets migraines too like me sometimes unfortunately.  I’m hoping the longer he’s off gluten the less frequent they become like they did with me.

Related Reading:

Why make your home Gluten Free?

The Book That Changed My Life – How I discovered I had Celiac Disease

My Celiac symptoms that I didn’t know I had

My Celiac symptoms that I didn’t know I had

My Celiac Symptoms that I didn’t know I had

I started losing track of everything that’s either completely gone now or 80%+ better, so I wrote down a list.  I couldn’t believe how long it was!  I created this before I got officially diagnosed in December of 2012 so I could have a list, if needed, for the Gastroenterologist.

I hope me listing this helps someone put the pieces of the puzzle together!

Symptoms Completely Gone (as long as I don’t get gluten)

  • Gas
  • Constipation
  • Diarrhea
  • Ringing Ears
  • Full ears
  • Crackling Ears
  • Stomach Bloat
  • Stomach Noise
  • Ear Infections
  • Sinus Infections
  • Brain Fog
  • Weak Nails
  • Hairloss
  • Sinus Rhinitus
  • Allergies
  • Numbness in Fingers and Toes
  • Uncontrollable Irritability
  • Depression

Symptoms 80%+ Better

  • Sensitive Teeth
  • Asthma
  • Migraines
  • Rosacia
  • Blisters on Nose
  • Frequently ill
  • Headaches
  • Tiredness

The year or two before I figured out I had Celiac Disease, and then later diagnosed, one really noticeable symptom I had was I had started loosing a lot of hair.  My hair dresser noticed as well and kept asking if I was stressed.  I really didn’t feel like I was more stressed than usual.  It was amazing to see how quickly I stopped losing hair after being just weeks off gluten.

As you can see, there were many ‘symptoms’ that were not obvious that they were related to Celiac Disease until you put them all together and until I went off gluten.

Related Reading:

Why make your home Gluten Free?

The Book That Changed My Life – How I discovered I had Celiac Disease

My Son’s Celiac Symptoms we didn’t know he had


Why make your home Gluten Free?

If you have one or more in your home that has Celiac disease, it seems to be a debate on whether to try to keep separate gluten/gluten free areas or make the whole kitchen gluten free.

For us, I started figuring out my need to be gluten free in early 2011.  I slowly transitioned to wheat free in 2011 when initially thinking it was a wheat intollerance.  Through experimenting eating purely barley soup in early 2012, I found out that I also had major issues with barley.  I had been suspecting issues with all gluten because despite being wheat free, I’d still have unexplained symptoms when being wheat free.  Once I went gluten free completely in 2012, I quickly found out that even the tiniest amount of gluten threw my body out of whack.  Because of my extreme reaction to gluten, I talked to our kids pediatrician and he agreed it was worth screening the kids.  To our surprise, the oldest came back positive for gluten antibodies!  We found this out in November of 2012.

Since finding out he had to be gluten free as well, we started switching more to gluten free in general in our household.  We still kept regular gluten bread in the house for the other two kids and for dad, though.  We marked peanut butter, jelly and other jars as gluten free or not.  This was to eliminate cross contamination from someone making a peanut butter and jelly sandwich with gluten bread and double dipping into the jar.  Even something like this was making me ill.

After 3 months of worrying if someone got the wrong jar we were finding a pattern that our oldest also got gluten symptoms at the same time that I did when there was a risk of cross contamination.  For example, we didn’t have 2 separate butter dishes.  So there was the potential for someone to make toast and get gluten crumbs on the butter.  Also I had to be careful to wipe out the toaster oven, counters, etc when making things for the two of us.  I was regularly making our meals on plates rather than counters or cutting boards.  It started to be pretty consistent when we both would have issues and I was getting very frustrated about getting sick in my own home!  It’s the one place you should feel safe to eat and not have to worry about getting gluten!  It was one thing for me to get ill myself, but to have my son describe the issues he had the next day to me really set it home for me!

The past few weeks I have removed all gluten from the house, I have started buying only Udi’s Gluten free bread for the whole family!  While this does increase our grocery bill by about $6-12 per week, a worst case of $50 extra per year is nothing compared to knowing that the house will be safe.

Since switching to all gluten free in the house I have had only one episode of gluten issues.  We do have a few pizza jar sauces in the fridge that have cross contamination potential in them.  I’m interested to see how this progresses over the next few weeks.

The first week that I shopped knowing I was not buying any gluten bread was such a relief!  I can’t describe how much relief I felt knowing that I wasn’t buying anything with gluten in it.  We already had switch all our pasta to gluten free about a year ago and only had a few misc things besides bread with gluten in them.  You will just feel so liberated and so much safer in your own home if you go all gluten free.

If you have someone in the household that has Celiac Disease, I highly recommend for their comfort, their health and your sanity to try going completely gluten free.  Besides having your home being a safe place, everyone will also be eating better.  The cheapest way to be gluten free is to simply get items that are naturally gluten free!

How to tell if something is Gluten Free

The easiest question to ask yourself to see if something is gluten free is:

Is it a man-made food or a man-altered food?

If the answer is no then it’s gluten free! 

If you can go out and pick it and eat it without doing anything to it, it’s gluten free.  (For example, fruits, nuts and vegetables)  If you eat meat, if man has done anything extra to the meat, then it may not be gluten free (added chicken broth, added flavoring, etc)!  See my post on Gluten in Chicken and Turkey!  If it’s not altered by man then it should be safe!  There should be only 1 ingredient, the meat itself!

Anything found in nature that’s directly editable is gluten free (fruits, vegetables, nuts and unaltered meats).  Some items found in nature that’s not gluten free are also not directly editable.  For example, barley is a grain found in nature but it’s not something you eat without processing and cooking it.  Same goes for wheat and the other wheat families.

Ingredients that always mean gluten:

Ingredients that sometimes mean gluten:

  • Natural Flavoring
  • Maltodextrin (unless specified that it’s corn)
  • MSG (mono sodium glutamate)
  • Oats (Unless certified Gluten Free!)
  • Natural Flavoring

You can always find a up-to-date complete list on some of the official Celiac websites such as

I’ve found through trial and error that when in doubt, just don’t eat it!  There has been countless times I’ve said to myself, well I don’t think it has gluten in it, and it’s come back to bite me about 9 times out of 10.

Always check with your doctor and/or dietician for the latest information.  Being gluten free though can be very simple if you just don’t eat processed foods.  The one great thing about having to be gluten free means you simply naturally eat better by eating directly from nature!

Chicken, Turkey and Celiac Disease

Did you know that if you have Celiac Disease you should be very careful of the chicken and turkey you eat?  Many brands have broth additives.  These broth additives sometimes contain gluten!  Who would have imagined when first going gluten free!  (The longer you are gluten free the less I found things like this surprised me though!  Gluten hides in many places.)

For me, I’m super sensitive to gluten and I have to be careful what brands I buy I found out.  I was sometimes getting sick when cooking at home making chicken dinners and sometimes not.  I figured it out to be the brand of chicken.  I, like most people, was going for the brand on sale when I shopped.  Turns out, brands that add chicken broth (Tyson for example) were giving me mild reactions.  Enough for me to notice, but not super bad reactions.

If you have Celiac, even the smallest amount of gluten can harm your body, so it is super important to eliminate all that you can.  I now only buy an ‘Amish’ brand in our store that does not have anything added to it.  I consistently have no issues with it!  It’s great to have something I can rely on and know it’s safe for me and my oldest child.

When shopping for chicken and turkey, try to get brands that do not add broth!  Even if it says ‘all natural,’ that doesn’t mean it doesn’t have gluten!