I've been wanting to write this post for about two weeks. The sad thing is though, I've been at a loss for words. I've sat there speechless, trying to type, trying to talk about it, and nothing was coming.
So here goes nothing.
Since my youngest son (now 3) was born, we've had issues with him spitting up/throwing up. For the longest it was just "happy spitting" and we worked out any short-term food intolerance he had while I was nursing. After I quit, we went about a year or so of cyclical vomiting. I had saved a whole lot of links on what that is while I was investigating, but my laptop bit the dust around the holidays and we got ourselves a new one to replace it since I am always on the internet keeping busy, researching and talking with people.
I'll try to reproduce some of what I found on the syndrome and share it here. This was helpful for me to better understand my own cyclic vomiting when I was a teen, and when I was pregnant with both of my kids. I ended up printing that out, along with this, this, this, this, and this. It was around this time last year that I pressed my husband into helping us get an appointment at the pediatrician and push for a diagnosis. What was going on is not normal, when intervals went from every other month to every month, to every couple weeks to every week. The kid is growing well, but it was terrifying.
I started investigating the Paleo/Primal diet in February. I wanted means for my husband to lose the weight he gained in the 3 years we had begun to have children, and I needed to desperately shed the pounds I had gained due to my diet being thwarted in my pregnancy and the horrific event that became what we dealt with rather than the ideal birth that I knew I could do if I was not having so many pregnancy complications. I had weaned my son around 18 months and could do no more, but get myself healthy.
The cycles of vomiting that my son had were increasing. We went to the pediatrician and pressed him hard to give us some kind of answer or send us to a gastroenterologist if he could not. To diagnose CVS, you have to see a gastroenterologist and a couple other doctors to rule things out. So, we got a referral to the gastroenterologist.
I waited. Then, I brought everything I had printed and I asked if it could be a hernia, reflux, the fact I have celiac and both kids have reacted and I've kept them gluten free their entire lives, but that he was exposed in utero and we had a very difficult pregnancy and had a traumatic C-section and spent three days apart. I mentioned the fact that I know this is not normal and there are no specific foods causing this. One day he might throw up a peanut butter sandwich, but he'll never do it again. One night it might be spaghetti, but he'll not do that again for another 12 times throwing up. It might be a banana, or medicine, WATER, Tea... never anything definitive, never anything that would be logged more than twice in a total random occurrence.
The doctor wrote me off. I was more than pissed off. I was past livid. I knew it would happen, because a) I'm American b) I'm proactive c) I know where to look for medical info and I'm not unintelligent when it comes to things concerning myself or my children d) I project as a strong intelligent woman which = "She's been at Doctor Google all night." to many doctors.
I had a child that was not just vomiting, but having diarrhea for a week after each cycle of vomiting. It had gone from loose stool to liquid that wasn't staying in disposable diapers. I was terrified. We did blood tests and his IgE was very high, and his IgA was rather normal. We knew it was something autoimmune going on plus whatever else it was, but this was where my mommy radar was pinging and I couldn't pinpoint where or why.
I kept pressing for answers. He wanted me to pursue a Fructose Malabsorption Diet. After going through all the stages possible of being totally angry, I became indignant.
He thought I was making this up, and my kid would respond to this if it is what is in his opinion the right thing.. Bring it on baby. I'll do the crap out of this diet and prove I'd already ruled that out and I'm not stupid. We kept a nice log of things, I investigated the heck out of that, and we got referred to a dietician.
I found that the FODMAPS diet fits well with the Fructmal diet, and I kept asking questions on the celiac forum that I am on, in addition to the Christian mothering forum I am on. I got some great input, though I was just completely overwhelmed with all the printing (about a ream of paper) I had done, all the reading I had done, and just was so over what I had to bring with me to the meeting with the dietician and the fact my inlaws had to pick up our kids while we drove to the city to have the meeting, which would cost only G-d knows what... to get the same answer I already had.
I know how this sounds, I'm so full of myself. No, actually, I'm not. But when I'm sure, I'm sure, and I'm hardly ever wrong. . . which is part of how I had to function almost my entire life. I'm working on breaking out of that mold some, and I'm a bit less INTJ and more INFJ now. So, my feelings were taking over the rational side and I was getting angrier and angrier, because I could see, as the primary caregiver and primary nurse of my child - this was just the wrong path entirely.
The more I read before meeting the dietician, the more I felt like I was having a break from reality.
Several weeks after our meeting with "The gastro from hell", as I was calling him at that point... and a few other things. I quit my derisiveness and got down to business. Fine, I can't prove him wrong with my list of his diet, and how often he has been throwing up, what he's eaten in those occasions and the fact that I had cyclic vomiting since I was around eleven myself - I'll meet the dietician. What the hell do I have to lose? Not much really, except maybe another angry outburst when I get in the car and go home; or perhaps, an ally.
The very frustrating thing? I could not call the doctor at regular hours for a phone consult like our pediatrician. He was only in on mornings he had surgery (endoscopy and such), and then he was only in from 2-5. He had phone consults for one hour, one day a week. Just thinking about it makes me twitchy, as we still need to try and reschedule to do a swallow study.
We were told that until we met with the dietician, make no changes. It was a week long wait... with almost every day at that point being part of the never-ending cycle of vomiting.
Finally, the day of our appointment arrived!
I gained an ally. She was surprisingly knowledgeable about Celiac disease and the reason for our diet. She LISTENED when I explained what we were going through and the process of elimination that told me that the Fructmal Diet was NOT where we should be headed, but I agreed with her, we will try it and prove the doctor wrong. I asked her why on the internet, in the gastroenterology websites, dietician websites and blogs I found, there were such discrepancies as to what was or was not allowed on the diet. Answer: Not everyone tolerates the same amount of fructose, so it is trial and error. You begin a total fructose free diet for 2 weeks.. Then you slowly introduce fructose while putting lactose (milk sugar) on said food item to minimise it's affect, and aid in digestion.
Here is where I found all of my helpful information:
Dr Rodney Ford: Fructose can make you sick
Grow Youthful Health at any age: Fructose Malabsorption
Diet.com Fructose Intolerance
HealthHype.com: Low Fructose Diet in Fructose Malabsorption
HealthHype.com: Low-FODMAP Diet – Foods to Avoid in IBS and Bloating
HealthHype.com: Nutrition Guide for Fructose Malabsorption
Life Goes On... Fructose Malabsorption Diet
Bikram Butterflies: Fructose Malabsorption, Redux
www.ibsgroup.org/brochures/fodmap-intolerances.pdf
http://fodmapsdiet.com/background/
The FODMAPs Approach — Minimize Consumption of Fermentable Carbs to Manage Functional Gut Disorder Symptoms By Kate Scarlata, RD, LDN
http://www.gapsdiet.com/uploads/FAQS_Listing.pdf
http://en.wikipedia.org/wiki/FODMAP
http://www.alive.com/articles/view/23452/fructose_malabsorption
http://www.eat-real-food-paleodietitian.com/support-files/Paleo-FODMAP-food-list.pdf
http://gapsdietjourney.com/2012/09/fructose-malabsorption
The DZG (German Celiac association) has a flyer about the diet.
Then I found a different explanation .
The DGE sort of backs that up as well, that it's a 3 stage diet, massive fasting in the first few weeks, trials and then going from there.
This GI's site is saying we're talking now 5-6 small meals a day.
This list is saying completely different foods, allowing items that are on the no-no list on all the other lists (tomatoes and such). It has a pdf to print and know how much of what to eat. But, this Austrian PDF has a whole other food list. This PDF gives more technical stuff than I saw on the other pages, especially on the 3 stages of the diet.
Found this recipe booklet with info from a Dr's office - but none of it is options we can do with it being dairy and gluten options. Some of it looked like it met the stage 2 and 3 version of the diet only.
This PDF was another techie manual, but seemed more helpful. 9 pages! I'm impressed.
So far this looks the most helpful - as does this 7 page PDF in the same vein.
Another PDF I found in German.
Paleo Mom and Chris Kresser had some info.
An acquaintance of mine recommended Practical Paleo: A Customized Approach to Health and a Whole-Foods Lifestyle -- which I sadly cannot afford at this time. But, it spurred on further investigation. It began looking more and more like this diet is a modified GAPS/Atkins diet. I was told since I was such a great researcher, keep pooling my research abilities and bring what I can find to the next appointment we would have with the gastroenterologist.
The Gastroenterologist had basically told me and my husband how stupid I was. He would talk to my husband rather than to me, as if he knew what was going on or what the doctor was talking about. He didn't. I was the one answering, and the doctor was playing up the "doctor god" card, as well as showing his completely misogynist side. He really was being a complete ass the entire time we were with him for that first appointment. We had brought our son along so he could see the human problem, rather than reduce him down to a few slabs on a microscope to analyze and he had instead decided to ask us if our son was right in the head.
Yes, why, yes he is. But, we had to come when he has his nap and wake him up when we took him out of the car, and he loved everything on the doctor's desk and is a very hands-on extroverted personality. He kept asking to touch things. He insisted he needed down off our lap, and then would turn around and beg us to hold him. It was insanity! But this is what I was dealing with on a daily basis in addition to his chronic cyclic vomiting. He had gotten to the point he never wanted to leave the house, and had started carrying around his own bucket. IF he got the least bit nauseated, he would scream "Bucket! Bucket!!" and run.
He still does this, but it is not nearly as bad as it was last year.
To tell you how well our meeting went with the dietician, this is what I wrote about the experience:
So, we had our meeting. We were there over an hour talking, and I'm shocked - I did a good deal of it... and I didn't sound stupid or not so educated as far as German goes, but you could tell I wasn't up on all my technical German and I got stuck a couple times with terms not sure if I had the right term or not, but we worked it out.
Apparently, here's the thing - the reason for all the varied lists is that each Fructmal person won't be able to tolerate the same thing as the others.
So, we do the three stage diet. BUT - unlike all the lists, we are allowed all vegetables except tomatoes (it's a fruit! - I knew that though). We need not worry about cooking or eating them raw or whatever - just make sure to eat with meat and bread etc.
I will have to look over our breads and see what he can have over the week. No baking from scratch unless it has no sugar or I can use grape sugar to make it. Which reminds me, I have a question about Kombucha as teas are allowed as long as they are not fruit tea.
It's going to be kind of like Paleo / Gaps, without fruit. Nuts are allowed.... but we have to be careful and get more natural peanut/hazelnut/sunflower/almond butters that have no sugar in them. So that counts out the ones we eat all the time.
Otherwise, she said it sounds like we have a great handle, and given our symptoms and family history it sounds crazy to do this diet, but it's up to the GI and we'll play as he sees fit and see how we do after the strict fast from sugar.
...So we start the diet tomorrow with a food diary, and we'll see how long it takes for him to have another bout of his vomiting.
I think the nutritionist was a bit shocked I was up on my game and knew what she was talking about and had studied up.
Here we go... let's start this roller coaster already.
September 3, 2012
Well into the diet, he threw up again. I ended up only cleaning up what I had to and retaining the towels in case the GI wanted samples... and he eventually asked us to take stool samples for testing. OMG, I slathered that sample thingy full. I wasn't just giving him a little stool sample on a test stick, I was giving him enough he could run whatever he wanted. *cue maniacal laughter*
People kept pressing me from February forward, to try the GAPS diet. I kept saying no, it looks too complicated (it was at the time), I couldn't afford the extra kitchen appliances I would need (food processor, dehydrator) and I didn't have the room in the house to do any fermentation. (I do and I don't now - we are still working on that!) I was eating rather clean, why if I did paleo, did I really need to look at GAPS?
I'm looking at one of the threads where I was asking about Paleo v GAPS and now I remember all the panic and what was going on. Oh my word, how could I have forgotten? Must have been the sleep deprivation! There were many weeks I was subsisting on 20-25 hours of sleep. This is with a kindergartner who was in his group 5 hours a day, 5 days a week, and a child that was next to me or on me 16-18-ish hours a day. (When he wasn't being sick or asleep.)
My husband had a gallbladder attack at the time we were pursuing all this testing in February of last year. In addition, they did testing and found he has high liver values, indicative of possible Non-alcoholic Fatty Liver Disease or something equally as scary, and we'd done several bouts with MRSA appearing randomly on his hand and him seeing a Dermatologist. His family doctor kept telling him "you're fat" (ok that is how it was filtering to him) and that he needs to lose weight. We all knew that. He was getting bigger and bigger and looked like he was pregnant with twins or triplets. This was of course, very terrifying, considering what we were going through and the fact he is 6'3" and we cannot weigh him at home to monitor progress at all. We'd also gone through two bouts of Mononucleosis (not me, him with me doctoring him) that year, and me trying to solo parent two high needs preschoolers while he lay in bed and moan and have a man cold. I'm not belittling his plight at all, but I had no backup and it was not only terrifying, I was barely hanging on by a string. My rope had frayed and there was nothing below for me to land upon.
To tell you how terrified I was, I wrote this on the first of March last year:
His cholesterol is "OK" for his overweight. His heart is taxed (duh) and so is everything else. He's not eliminating toxins like he should... He's not getting what his body needs to "make it go" and work at optimal levels - he's getting what his body likes, and then starving himself 3/4ths of the time to lose weight. He's now packed on weight like a bear. He labors to breathe, he labors to walk, he keeps talking that he'll be in a wheelchair soon.
His immune system is SHOT. He gets sick all the time since November.
I'm trying to work from a positive area on this, but it's getting to the point of "tough love" with him and just changing his diet and being as supportive as possible, but not backing down. I'm scared for our kids. They see how he eats and now my oldest is kicking a fuss at dinner time to eat like daddy.
Considering I really do everything around here, this is terrifying. It's not an option. I'm scared to death he is going to have a heart attack, or keel over because of his liver. IF he needed an organ, he's not someone that would even go on the list because of his weight and habits.
It's just such a mixed bag and so sad and frustrating. He's the breadwinner, and something bad happens, we're out in the cold.
Yes, I was terrified. I still am to a degree, but he is much smaller than he was, though he is still quite large. To top it off, while my sister was here, we were all dairy free for over a month and continued that until well after all our testing with the gastroenterologist and we had proof that it was not dairy that was an allergy, but that it was somehow triggering the youngest's bouts with CVS.
There was talk of tonsil surgery... but he had to lose weight. (I also conveniently forgot about that and will be asking him again since he was sick more than I was this winter!)
April 25th, I wrote:
I'm a bit überwältigt about it all.. in every way one can be overwhelmed. I'm trying to do the Gaps Underwhelmed way of doing this, but even with just getting things together, the changes, the investigation everything requires, the needing to get a couple other cookbooks and knowing what is for sure ok for each stage is just so much!
BABY STEPS.
I've got everything I have printed thus far on everything Gaps related sorted and in a big binder by subject and stage. (that's my step today) Then I have recipes in the back. I'm hoping there are some websites out there that have ideas per stage of how to encorporate some of these things, because I am just looking at the list of allowed foods and going "uh, wouldn't it just be easier to go from stage one to full gaps and back it up step by step eliminating foods? - I'm just not sure.
I've been reading where people do it so many different ways. 30 days - 60 days- 90 days- step 1-6, each a month and then full gaps... I don't know what would be better/easier for us, so I really just have to step back and keep up with stage one and investigating as I go.
...I think the part that makes it so overwhelming is that DH keeps asking me "Hey, what's for dinner?" as if it will change very much in the beginning. It really doesn't, and I think that is what is overwhelming to me - I have to tell him that until I have more information, it's still soup and broth and such.
We're kind of half stage 1 and half "I still don't know what I'm doing so we're keeping part of our normal diet"... It's all I can really do right now - which sounds like something awful and like I'm justifying cheating, which I am not. I just have to bring DH round to the whole idea slowly, because he hates change, and until I'm certain what is on/off the list due to our finances being tight (hence no new cookbooks), I can't just jump in with both feet and not look back right yet. I am looking forward and seeing a light at the end of the tunnel though, which IS good.
Three days later, I had my water kefir (tibicos) and kombucha. I'm still making kombucha!! I have my tibicos dehydrated and am waiting for the right time to revive them again. By my parent's anniversary in May, I had my Milk Kefir, which is still brewing, and the only fermented drink that my husband will try. (cue me shaking my head and rolling my eyes)
I asked him to try both the water kefir and the kombucha, but his answer was simple: no!
I have not tried asking again.
By October of last year, we had our definitive answer on what was wrong with my youngest, without any further testing.
We ended up that it was not Fructmal at all. Got set up for an upper endoscopy... the wait time was 6 weeks, got a call last week that moved us up to this week though. Endoscopy was yesterday. Very nerve wracking but we know a bit more about where we stand.
Hiatial hernia and small hole in the diaphragm/esophagus. Some iron/ferritin deficiency... and we're waiting on the rest of the blood tests they had to stick him in the foot for, plus the biopsies from his esophagus, diaphragm, stomach and duodenum.
From what I am reading about hiatial hernias, we did well to remove milk products in March/April, but we need to remove/reduce some other items. I will have to see if we are or are not facing surgery in the future.
This is very nerve wracking and sad at the same time to have an almost 3 yr old facing all of this.
So, here we are a year later and a crazy amount of sorting and printing of recipes later, and a blog to keep me accountable. We are back to dairy products, though trying to limit it some (he is however drinking milk almost daily as of this month) - and we are more GAPS than I would have forsaw last year.
We were given a gift of a food processor/blender which I love and use almost daily, and our kitchen is being re-arranged to be come more efficient. We also are having some success rearranging the house and getting rid of some of our excess items. I'm trying to do 2 GAPS meals a day, and we are keeping up with bone broth two to three times a month. I make meat broth every other month when I take a few chickens and boil them. I then de-bone the chickens and strain the broth off of it and freeze each one in baggies for use later on in the month. Hopefully I can post about that later.
I didn't write about my health issues in all of this, as I was more terrified of what was going on with the children and my husband than I was about myself. By last summer, I was undergoing testing at my primary care physician's office and found out that my iron was very low. It was the lowest it had ever been, so we were going to pursue iron infusions in September. Between September and November, I was at one or another doctor's office every week. We were at the doctor so much, I forgot to schedule my yearly appointment at my OB/GYN. In fact, now that I think of it, the same thing happened in 2011, and I've missed two appointments with him. Whoops.
So, as soon as things calm a little here, we need to a) schedule another appointment for a swallow study, and b) schedule me an appointment, and bring all the information I have from my PCP to let the OB/GYN know what has been going on. Maybe I won't get too stern a talking to? One can always hope, right?
In June of last year, my husband and I celebrated our 5th anniversary. (we have two, but that was our 5th for the church wedding - long story there!) When we came back, we saw that there was a gym being built in the City I pick him up at from time to time when he comes home from work. It was not too far for us to drive to daily, and the price for a yearly contract wasn't bad. They'd have pool-related sports, a lovely indoor gym with machines, Zumba, Aerobics, Yoga.. you name it. We signed up.
They opened their doors the last weekend of September, and I began going in October 4-5 days a week. I took a break in December when everyone was so sick, and I began back this month, as I got sick and was unable to go in January and February. I'm back to 2-3 times a week, and I've been thoroughly enjoying my yoga classes. I've not lost any pounds, but I have lost one dress size.
We've changed our diet almost entirely, though my husband is still sneaking around and buying sweets or chips here and there. It's a work in progress!
I hope and pray if you have made the choice for the GAPS diet, or perhaps Paleo/Primal, that your trip to the diet was not as eventful as ours, or as stressful and heart-wrenching. I'm still reading up on the GAPS and Paleo/Primal diet. Next on my list is The Whole 30 Book. A lovely lady gifted me a copy, and I've not had time to read it yet.
This is our story. Your mileage may vary. What brought you to the GAPS diet?
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