Wednesday, August 3, 2011

Working without a diagnosis

We took Ellie in for an abdominal ultrasound and to get some bloodwork done on Monday to look into the theory that she is having some type of problem with her liver, gallbladder or pancreas. The only other experience I've had with an ultrasound was the one I had when I was pregnant with Ellie, in which the ultrasound tech explained what we were looking at and was generally a wealth of information. So I was surprised and frustrated when the tech on Monday wouldn't tell us a thing. She said they'd write up a report and send it to Ellie's doc and only then could I find out the results. Well that took 2 days and the waiting drove me up the wall. Finally I got this email today from her doc:

"Labs and imaging are normal. I know that is frustrating... I will go ahead and get the GI referral initiated today."
I was shocked. I thought for sure we were onto something. I spent several hours wanting to crawl into a cave and give up, but after a long talk with Ian and an exchange of emails with our nutritionist I'm feeling better. Our nutritionist wrote:
"I'm not sure the ultrasound is the be all, end all. The symptoms are leading us somewhere and I feel like we need to continue to pursue it. I'm going to talk to several others about what we might not see in the scan."
The reason I was feeling so frustrated was that I was just sure in my bones that we were really figuring this thing out. And the truth is - positive test or negative test - we are figuring things out. We know that Ellie is not digesting saturated fats well. That is a lot more information that we had a couple of months ago. So we will keep following the symptoms and see where they take us.

I've been feeling some frustration lately that Ellie obviously has "health issues" and yet no diagnosis. It's really hard for me to have a conversation with someone - who only means well - and to have them ask if she's been diagnosed with anything. Even if the person doesn't intend this message at all, the message I internalize is "why are you subjecting your child to this diet if she hasn't even been diagnosed with anything!?!" I think my push to get Ellie diagnosed with something is more about my need to look legit to the outside world and less to do with effectively treating Ellie's symptoms. The desire to look like a "good mother" is a hard thing to escape.

I've been reading a fantastic book called The UltraMind Solution by Dr. Mark Hyman. In it, there is a passage about the usefulness of a diagnosis. It's so funny how books find me just at the moment I need them to speak to me. Hyman wrote:
The Myth of Diagnosis: If You Know the Name of Your Disease, You Know What's Wrong with You
This myth is pervasive throughout medicine not just in psychiatry and neurology, and it is the single biggest obstacle to changing the way we do things and finding the answers to our health problems. 
The problem is simply this - we are in the naming and blaming game in medicine. It is what we were trained to do. Find the name of the "disease," then match the drug to the disease. You have "depression," so you need an "antidepressant." You are "anxious," so you need an "antianxiety" medication. You have bipolar disease or mood swings, so you need a "mood stabilizer." 
 Unfortunately, this approach or method of thinking is outdated, increasingly useless, and often dangerous ...
 ... these labels or diagnoses are just names we associate with a collection of symptoms. This name has nothing to do with why you have those symptoms - with the root cause of the "disease." 
 I love this passage and I think it applies beautifully to all the gastrointestinal and behavioral/developmental issues that lead a person to the Specific Carbohydrate Diet or to GAPS. For example, overgrowth of bad bacteria (the only real piece of information we have about Ellie's health besides our observations) is associated with myriad diseases including Crohn's, Ulcerative Colitis, Irritable Bowel Syndrome, dyspraxia, Attention Deficit Disorder, autism and more. One cause - many diseases.

Dr. Hyman talks about how one disease can have many different causes and how one cause can lead to many different diseases. The examples he gives are depression and gluten. Depression can be caused by many factors, such as nutritional deficiencies, low thyroid function or an autoimmune response to gluten that inflames the brain. On the other hand, gluten intolerance can lead to myriad health issues, including anxiety, depression, epilepsy and migranes.

Dr. Hyman writes:
The future of medicine is personalized treatment, not "one size fits all." The outdated method of naming the disease and then assigning a drug to fix it clearly isn't working.
Unfortunately, few in the medical industry today seem to understand this. The truth is that medical practice is virtually predicated on the myth of diagnosis.
 I'm going to take some comfort in this idea and continue pursuing healing, even though we don't know - and may never know - what "disease" we're trying to heal.


  1. Hi Annie,
    First, I am very sorry to read that you and your daughter are going through the exact same thing my daughter and I have been going through. When I found your blog last week, I couldn't believe what I was reading! It felt like I was reading about myself. My daughter (J) is 21 months. Thank you so much for writing. Every time we go to any doctor and I describe our problem, they look at me like I am crazy! We have another GI appointment next week. My friends can't believe that she sleeps 2 hours at a time max and some nights wakes up every hour. My husband calls me a m-ombie. Anyway, I was wondering how has Ellie's poop been this whole time - color, texture, frequency - I have become a serious poopologist. I still nurse J, too, and thank goodness for that! I really hope that you will figure it out, soon, because this is too hard on anyone to deal with for this long...

  2. Hi JG - Nice to hear from you! It's always reassuring for me to hear from mamas who are going through the same experience!!!

    I have become a serious poopologist too, though I don't often blog about poop. I guess I have a fear of Ellie finding this blog in 10 years and being MORTIFIED! :)

    When we were on GAPS intro Ellie struggled terribly with constipation. I gave her regular enemas (I tried not to let her go 48 hours without a BM - some people say to do it every 24 hours). But right around her second birthday she became very very sensitive to enemas so we cut them out. I also believe right around that time she started withholding poop because she was afraid it would hurt, making things even worse.

    In the past month we have finally reached her full dose of probiotics (she takes 4 scoops of GutPro/day) and we started digestive enzymes (she is taking 1 capsule of Enzymedia's Digest Gold before every meal and these two things have finally resolved the constipation. Just in the past week or so she's been pooping daily and sometimes twice a day. Lately her poops have been green sludge or sometimes more of a mushy consistency. The other day she had one formed poop, which was very promising!

    I hope this is helpful! I would love to hear more about your daughter's situation and what you find out from the GI appointment. We have to wait til Sept. 8 for our GI appointment. (Ellie saw one last summer but we're trying a different one now.)

  3. Hi Annie,
    Green sludge has been our problem since the day we started J on solid food. No matter what I gave her, she'd have a tummy ache at night, being awake for 2 hours usually between midnight and 3am. In the morning we got a diaper full of dark green sludge. If nothing bothered her, we would have a bright yellow sludge. Formed poop maybe 3 times in 21 months of her life. After her first birthday, she didn't grow a bit for 6 months! She was 50th percentile for weight and height when she was born and over a few months after her first birhtday became 3rd percentile for both. I think we talked to 7 doctors, all of them looking at me like I was crazy. We did a skin test for allergies, got positive for milk, egg and beef. None of the doctors believed she could be allergic to anything, let alone something through my milk! I have also been gluten free since February. I started J on SCD diet a month ago and she managed to grow a little and gain some weight, hurray! I am doing my best to also eat SCD but it's been difficult for me, as I am sure J is sensitive to chicken/poultry and I can't imagine eating pork broth (yuck), since she is allergic to beef and I can't stand lamb. Anyway, I was wondering how the GI ProHealth probiotics work for Ellie? I see that you are using different one now...

  4. Hi Annie,

    Though you are working without a diagnosis it still seems to me that you are totally on the right track... I think most naturopaths don't start with the specific symptoms anyway but go straight to healing the gut and the liver in every situation, thus creating a enviroment where the body's self healing can be started. And you are doing just that - focusing on gut and liver - and the two are so related. Also i've read that gut/liver health is reliant on vit D absorption and that is very commonly low today - and can cause probs esp when breastfeeding - wonder if you've noticed any difference since addressing the Vit D thing with the FCLO? I'm still taking it - managed to get a flavoured one now which is MUCH better!!! and it does feel that its doing Louie and I a lot of good.

    Hi JG (hope you don't mind me posting a word to her too Annie) I'm breastfeeding Louie (2), I'm on GAPS myself 6 months now (massive improvements) Louie is/was like your little one - waking every 2 hours - it seems to have got a bit better recently but still not great by any means. He's on lots of probiotics too. Just wanted to chime in on the green poo thing though!!! - just in case it helps. Louie has green sludge in his first year and lots tummy pain etc. - thought it was gastro or something for a while but then called LLL and tried their advise of block feeding - worked like a dream. It might not be the same issue for you and/or you might have tried that already but just in case not: for me it was a case of me having a milk supply imbalance: too much foremilk (very high in lactose) so he wasn't getting enough hindmilk (the good fatty bit that fills them up etc.) - so the high amount of lactose irritates the gut and causes the green sludge apparently. I've never read about this in all my breastfeeding books. But with the LLL helpline advise it was sorted within 2 feeds. Just feed from one side (for x number of hours - different for different folk - i tried 4 as he was feeding often then) and start the next feed on that same side so all the hindmilk is gone before more foremilk.

  5. Hi Annie,
    I just wanted to talk to you about the liver/gallbladder, I know you are working with a nutritionist but sometimes they don't have all the answers. An ultrasound would not show whether or not a liver or gallbladder is clogged up, it would only show calcified stones which she probably doesn't have. The green sludge is from the liver. Also, bile will only flow through the liver and gallbladder ducts when the colon is not clogged, so if she has chronic constipation that would be a very good reason as to why the gallbladder is not releasing properly to digest fats, it can also precipate constipation since bile loosens the bowel. I would like to recommend that you look into doing a liver flush for her with some colonics as needed. Here are some excellent resources for you about the liver:

    And here is a description of the flush itself:

    I will be doing the cleanse myself because I feel like I am not digesting fats well either, I don't get pain, but my stool floats and sometimes I see an oily film, but with the enzymedica it has gotten a lot better, but that won't address causation. Andreas also talks about how food allergies are also the symptom of a clogged/overworked liver. I urge you to listen to those videos! He is a very wise man even if he doesn't eat meat. Just avoiding fats will not solve the problem because eating enough fat with our food helps to digest and assimilate minerals so he is a huge advocate for eating good fats (he doesn't advocate animal foods-not saying I agree with him in that area, he says ghee is good)

  6. Hi Julia,
    Thank you so much for posting for me :) I also hope Annie doesn't mind. I found out about block feeding early on from my sister (who lives in Europe), whose baby is a few months older than mine. Apparently, this is a common knowledge between breastfeeding mothers over there. Later, I also read about it on LLL. J's problems really started with introducing solids at 6 months. Many attempts failed so she was 95% breastfed her first year. Interestingly, even when she was 3rd percentile, she had quite a bit of body fat, which is why I think none of the doctors we've seen was concerned despite the fact that she didn't grow at all for so long. Eventually, she was finally able to somewhat digest meat at 16 months. She's been on lamb, avocado, pear, banana and apricot diet since. I am having really hard time getting her to eat any veggies :(

  7. Hi all,

    I don't mind at all if you use this as a forum to give each other ideas! That's what we're here for.

    JG - Ellie was a colicky baby but her problems got much, much worse when she started solids. She ate some veggies and fruits with no problem but once we started introducing dairy, soy, gluten, etc. that's when she started going downhill fast, got labeled "failure to thrive" and she dropped from a healthy weight to the 3rd percentile. It was only after starting the SCD many months later that she started to climb in the charts again. She's now back to about where she was before starting solids (as far as percentile). The block feeding thing didn't really apply to us either. Ellie was a pretty good pooper on the SCD and only started experiencing severe constipation and now this green sludge when we went on GAPS. GAPS just ended up being really unhealthy for Ellie. Of course, we're still on the diet, but only in respect that we're eating GAPS/SCD-legal foods but our diet is much different than what's advocated in the GAPS book.

    Julia - So glad you got ahold of some flavored FCLO!!! :) I haven't noticed any changed I could directly tie to FCLO ... I'm sure it's one of the pieces of the puzzle that's helping Ellie but when we introduced that I didn't see any massive improvements. Who knows...

    Janelle - Just because the ultrasound was negative does not mean we've given up on the theory that it's Ellie's liver/gallbladder. We're working closely with our nutritionist and naturopath to address these issues while we wait for an upcoming appointment with a GI.

  8. hi - just wanted to post this in case Annie and any of you breastfeeding mamas haven't heard of this book 'Mother Food' yet:

    I just got it in the post and haven't read it through yet but from a quick glance it looks like it could have some more info on things we've been wondering about: breastfeeding when allergies/leaky gut are in mother and/or nursling. I even saw a little bit about herbs the mother can take/drink to help nursling with various issues one of which was sluggish gallbladder. All the info i saw on fats etc. went along with the Weston Price/GAPS line too so that's good.

    Hope you're having a lovely holiday


  9. Thanks Julia - this book looks like a fantastic resource!


  10. Annie and Julia,
    I found the Mother Food book on Google Books where you can search and preview pages. I haven't had time to read, yet, but it looks very interesting.

  11. I have it on hold at my library. *Love* Portland.