When GLUTEN FREE is not enough. Do you follow a GF diet and still feel sick?

When I was told that I most likely had Celiac Disease and needed to cut out gluten from my diet (13 years ago), I did it COLD TURKEY. I never looked back and I didn't do any research on what else I could have done (testing, supplements etc.) to help me heal. This was a HUGE MISTAKE and if I could do it over again, I would do several thinks differently.

One thing that I didn't do that I regret is not getting an endoscopy and colonoscopy FIRST before I started cutting out the gluten . An endoscopy is when a tube is put down your throat and into the small intestine and tissue samples are taken. The samples can show loss of the villi and other characteristics of Celiac Disease or gluten sensitivity. A colonoscopy would have shown any inflammation. It is so important that you get some sort of baseline testing so that you can, a.) see what, if any damage has been done and what steps you can take to heal the damage, b.) in the future see if all of the steps that you took made a difference.
 
Within weeks of going gluten free I did feel better. I was so sick before I cut gluten out that ANY improvement seemed to be a miracle. And even though I was feeling better, I still was having the same symptoms days, weeks, months and even years later. I was suffering from bloating and fullness after I ate. I was still burping and had major gas constantly. I would have bouts of crazy diarrhea and then full blown constipation. The stomach cramps would send me to the bathroom for hours and the migraines would debilitate me for days. Why was I still feeling this way? It's because I had my GLUTEN FREE BLINDERS on! I was so obsessed with eating gluten free that I failed to recognized that maybe I had other major food allergies or possibly another medical problem. I had already cut out SO MUCH from my diet. I really think I was in denial about how extreme my food allergies really were and that I might be suffering from something else all together. It was just such a major time suck already trying to find things that I could eat, the thought of cutting out anything else was just too overwhelming.

I have suffered many more years of needless agony and caused major damage to my gut because I didn't do an elimination diet of ALL the major allergens FIRST! So, the SECOND thing I would have done differently is make sure to take the food challenge where I would have eliminated the major food allergens (read here for list) out of my diet to find out what else I was allergic too. 
 
As it turns out, I found out this past June that I cannot eat dairy or eggs. I finally took the gluten free blinders off and did the full food elimination diet after an abnormal test result (read about that here). I do have other medical complications (an autoimmune type condition) that hinders my overall health and digestion BUT some of the other symptoms have improved greatly (burping, gas, bloating and constipation). It took almost twenty years to get some answers and a diagnosis.

The THIRD mistake that I made was not doing further research into what medical tests were available as well as holistic options. I really thought that cutting out the gluten was enough. Even though I was able to function, my condition still prohibited me from living a normal life. It took thirteen years for me to finally have medical tests done to narrow down my health issues and start taking supplements to heal my body. Now granted, there was very little information available when I first started the gluten free diet but so much has changed since then. There is a plethora of great information out there. There are books, blogs, websites and support groups that deal with Celiac Disease, gluten intolerance, food allergies, testing for food allergies, supplements and SO MUCH MORE.

I really have no excuse for why I didn't take the time to research my own health except that I let life get in the way. I tried to band-aid my issues with eating strictly gluten free and it was not enough.
Do not make the same mistakes I did. Make sure before you start a food elimination diet you have diagnostics tests done. Commit to cutting out all of the major food allergens during you elimination diet and be your own health advocate. Read everything you can get your hands on about your health condition (whatever it may be). Be open to alternative therapies such as chiropractic care, acupuncture, massage and supplements (just to name a few). Most importantly, if you don't feel good and haven't for a long time, do not stick your head in the sand (like I did). Take charge of your health and do the work towards feeling better.

Two Weeks of Sorta Kinda Paleo

June, 2013

As I mentioned in my blog post (In Search Of Answers June 2013), I had to go on a very strict elimination diet. I was following what is considered a Paleo diet (meat, fish, fowl, vegetables, fruits, roots, tubers and nuts). What? Wait a minute...roots and tubers? Never in my life had I consider that some of the food I was already eating was considered roots and/or tubers. Both words did not sound remotely appetizing. I did some research (that means Google) and little did I know that yams, potatoes and sweet potatoes are tubers. Carrots, beets and turnips are root vegetables. Now I go up to perfect strangers and ask them when was the last time they ate a root or a tuber (not really but that would be hilarious to see what answers I would get).
 
As luck would have it the beginning of this food elimination diet happened to coincide with a road trip. I started on the diet on a Wednesday and the following Sunday I had to drive my son to his college orientation...a four hour drive away. After dropping him off, I was then driving into the mountains to stay for two days. The house is forty-five minutes away from ANY food store.

I'm used to "going without". I have been going without eating a lot of different things (anything containing gluten, shellfish & nightshades). Now I had to find foods that were also free of eggs, dairy AND could go on the road with me. This meant an emergency trip to Whole Foods. After about two hours of label reading and $100 later, I had one bag of food to take with me. I hadn't had a chance to really study the Paleo way of eating so I just had to go with what I could find. I was really happy that I had a Whole Foods in my area because there is no way I could have gotten enough to eat from Food Lion. I had bags of dried fruit, bags of nuts, raw nut & fruit bars, plantain chips, fruit leather (tastes better than in sounds) and raw coconut macaroons. I bought some fresh fruit to get me through the days before the trip (apples, grapes, bananas & oranges).

We left on a Sunday and headed north into the WORST traffic I have ever been in. A trip that was supposed to take four hours took almost seven. I preceded to eat everything I had bought at Whole Foods during those seven hours. At some point we stopped at an Arbies so that my son could eat lunch. Guess what I ate from Arbies...a "naked" baked potato...no butter, no sour cream, no cheese...NOTHING! Off their entire menu, a freaking potato was the only thing that wouldn't poison me. This diet was not getting off to a great start but I was determined to stick with it. We arrived at the hotel and I was so hungry, I could have eaten the delicate floral patterned comforter. We ended up in the hotel restaurant and the only thing I could eat from their entire menu was a "naked" hamburger...no bun, no cheese. I did ask if they could add some mushrooms and onions but had to explain in my best Spanish (that means numbers 1-6 and please & thank you) thank I would crap in my pants or barf on the table if anything got cross contaminated. They must have gotten the message from me pointing back and forth from my mouth to my ass because I had no embarrassing reactions.

I was able to make it through the two days at the mountain house by finding an awesome grocery store and stocking up with more gluten free, shellfish free, nightshade free, dairy free and egg free food. The biggest challenge with this diet was that most everything I could eat had to be prepared in some way. I had plenty of "snacks" that I didn't have to do anything to (just reach my hand into the bag) but lunch & dinner was a whole other story. The following week and a half before I could start introducing certain grains (rice, corn & soy) back into my diet I TRIED to eat fresh fruits, vegetables, meat, chicken, fish and lots of nuts...more nuts that I have ever eaten in my life. Nuts became my constant companion. I was still working over seventy hours a week so preparing and cooking meals was extremely difficult.

 I had became obsessed with hummus and carrots during the two week elimination diet. The Paleo diet does not allow hummus (chickpeas = hummus and chickpeas are legumes not nuts) but as I stated before, I was trying the diet (Paleo) to determine further food allergies. Since I had been eating hummus without experiencing any funky reactions, I decided that I would keep it in my diet. I realized too late that I was a cheater...thankfully in this case there was no need for a divorce.

The Six Letter Dirty Word

Most dirty words are four letters but I beg to differ. The dirty word in my house (actually just between my husband and me) is six letters...H-U-M-M-U-S. The mere mention of that word now makes me tense up. Let me set the record straight, I LOVE HUMMUS. Unfortunately, my husband does not love HUMMUS. We ended up having one of the worst arguments over it. It started with a question my husband asked me as we were lying in bed watching "House Hunters" or "Love It or List It" (I can't remember which). Here is my version:

Husband: How long ago did you eat hummus?

Wife: Why?

Husband: Because I can smell it...it's coming out of your pores.

Wife: You know perfectly well that HUMMUS is one of the few foods that I can actually eat. You have told me at least twice before that you can smell the HUMMUS wafting out of my pores. I try not to eat it if you are going to be around but I was starving earlier in the day and you weren't here. I thought it was safe. (blood pressure and pitch of my voice raised <on a scale of 1-10> to a 5)

Husband: So it was earlier in the day that you ate HUMMUS?
(this is when I realized that my husband was trying to calculate how much longer he was going to have to smell my stinking HUMMUS pores...blood pressure and pitch was now at 8)

Wife: You don't get it do you? (blood pressure and pitch was now an 11+) You have no fu*king idea what it's like to be me. You don't know what it's like to only be able to eat like ten things without becoming ill. You sit there and stuff your face with whatever the hell you want and never think twice about me.

Husband: Let me just say to you that I will NEVER, EVER mention that six letter word again...trust me on that!

Wife: WHAT??? That's all you have to say to me...that you won't ask me if I ate HUMMUS? This is so much more than that and you know it!

Husband: Whoa...wait a minute...this isn't just about me saying that you reek for days after you eat HUMMUS?

This argument is when I knew I needed to start my "Food Allergy Extraordinaire" blog again. It really wasn't about the hummus. It was about feeling alone inside of my own head. If you don't have a chronic illness then you have no idea what it is like dealing with a body that is not cooperating. You have no idea what it is like to feel "less than" or "damaged". My husband is a pretty healthy guy. He can eat whatever he wants. We have been married nineteen years and as much as I know he loves me, even he doesn't really know what its like to be me.

I have been trying for the last three months to get back on here but I kept thinking that I needed to start from the very beginning of my trip down "the chronic illness from hell" road. This would mean going back over 17 years when I first got extremely ill. When I was down to eighty-five pounds and so sick I had to sleep sitting on the couch with my knees to my chin (think of a sitting fetal position) for months. I will get to all of that in future posts but for now I just need to write about what I have been through. Sometimes it helps to let it all out. Maybe my journey will sound familiar and you learn something that helps you. Maybe you have been through some of the same things and you can help me. In any case, I glad your here.

My Seventeen Year Stomach Ache and The Search For Answer

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Please note that I started this blog back in June 2013 but was unable to finish writing and publish this blog post until now...October 2013. Most of you know that many, many things have changed since June of this year and I am now trying to catch you up on what has been going on. I am sick and this is my personal blog about the road to my physical, spiritual and emotional recovery. I am opening my heart to you. Letting you into my "heartspace" means that I will be showing you my vulnerable side. I am willing to share my life with you because my hope is to help others. If anything I write/post/blog about helps you or someone you know, it will be so very worth it. I hope you choose to walk beside me as I walk into the arena.

"Perfect and bulletproof are seductive, but they don't exist in the human experience. We must walk into the arena, whatever it may be--a new relationship, an important meeting, our creative process, or a difficult family conversation--with courage and the willingness to engage. Rather than sitting on the sidelines and hurling judgement and advice, we must dare to show up and let ourselves be seen. This is vulnerability. This is daring greatly." -passage from Brene Brown's new book, Daring Greatly.

 Join me as I choice a life of daring greatly.
 
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 June 2013

I don't even know where to begin. There is so much history. I have not felt good in over seventeen years. It has always been my stomach...always. Twelve years ago I started eating gluten free. Three years ago I stopped eating shellfish. Six months ago I stopped eating nightshades (potato, tomato, eggplant & peppers). Now I must stop eating dairy, eggs and all grains. I already do not eat wheat, barley, oats and rye. Now I have cut out corn, rice, soy etc. I will be eating what is considered Paleo (Meat, fish, fowl, vegetables, fruits, roots, tubers and nuts). Why on earth would I do this to myself? It is the last piece of the puzzle in terms of figuring out what foods I am eating that are still making me so sick. I am trying the elimination diet where you cut out the major allergens. It takes a couple of weeks (at least two) to clean out your system.

I am starting this Paleo/Elimination diet because of an abnormal test result. I had to go through a test were I drink a small amount of radioactive water and then my stomach is scanned for forty-five minutes. A normal stomach will empty half the water into the intestines in thirty minutes. I never thought in a million years that the test would come back abnormal. All the other tests I have had came back normal (endoscopy, colonoscopy & blood work). I would explain to people that after I would eat...food seemed to just sit in my stomach until I would start to feel toxic. It turns out, that is exactly what was happening to me. My stomach does not digest solids and liquids properly. There are NOT a lot of options to fix my problem. The medical approach is a DRUG I take forever, a feeding tube or a stomach pacemaker. The holistic approach is a VERY SPECIFIC diet, nutritional supplements and cutting out as much stress in your life as possible. I am choosing the holistic approach which will require me to change A LOT of things in my life. I don't feel like I have a choice right now. I don't want to keep living a life of not feeling good.


So...what is Paleo? Some people call it a cult and other people call it "a diet". There is a very large group of people who consider it a "lifestyle" that goes beyond food. You can google the term Paleo and find out WAY MORE information than I want to personally write about in this post. Here is a link to one of the top experts on Paleo lifestyle. http://robbwolf.com/what-is-the-paleo-diet/. I originally learned about Paleo from a gluten free forum. People kept posting about how crazy the Paleo crowd was. Not only were they very harsh to non-Paleo's but would even turn on there fellow Paleo devotees. There was lots of talk about what food is considered true Paleo (what...no green beans?) and at what degree of a loser you are if you cheat and actually eat a potato. Getting past all of the controversy, what I did notice (that was very positive) from my research is that Paleo = gluten free. I didn't start on the Paleo diet when I first read about it but I kept it in the back of my brain.

I found out about the abnormal test result around noon on June 19th. I walked out of the hospital with the results in my hand and immediately immersed myself in the very restrictive diet. The next step was to get the appropriate foods into my fridge and pantry. So that meant I needed to stock up on fruits, vegetables, lean meats, seafood, nuts & seeds and healthy fats. I have to avoid eating dairy, all grains, processed foods & sugars, legumes, starches and alcohol. The Paleo diet allows you to eat eggs but since I am trying this diet to determine what additional food allergies I have, I am cutting those out too. I have to avoid all the items listed above along with all the other foods I have already cut out.

Let me just say that I am used to only being able to eat certain things but this elimination diet takes my already limited menu to a whole new (restrictive) level. I have learned to live without being able to eat so many different foods in the last twelve years. Somethings are easy to give up while others...not so much. Now I have to give up one of my FAVORITE things in the whole world...CHEESE! Alas, I will morn the death of smoked Gouda, fresh mozzarella, crumbly Mexican cheese and even Kraft "cheese food" slices. It's a sad day in my refrigerator.