5

votes

Should I see a gastroenterologist or a functional medicine doctor or ...?

Answered on August 19, 2014
Created December 10, 2011 at 3:52 AM

When your primary care physician is clueless about digestive problems and/or autoimmune disorders, how do you know when to see what kind of doctor? It seems like creative, experienced doctors for digestive and autoimmune disorders are scattered across a number of fields of medicine: Chris Kresser is an acupuncturist, Robb Wolf talks about functional medicine doctors, and a lot of the physicians on the paleo physician network are chiropractors. My PCP wants me to see a gastroenterologist. It's difficult to know what kind of doctor to seek out.

Background: My PCP diagnosed me with celiac disease, and 5 months of paleo eating later, I'm still struggling with symptoms. I'm worried that a gastroenterologist will be stuck in conventional thinking. To be honest, I'm also afraid of getting a biopsy or endoscopy and don't want to do it unless I really need to. I'd like to get some easier tests done to gather more info about what is going on. Tests for SIBO, food allergies, etc might be good.

Some related questions:

What kind of doctor should I see

Is a functional medicine practitioner advantageous or just hype

7841848bd0c27c64353c583fb7971242

(7275)

on December 08, 2012
at 03:02 PM

Unfortunately, I was never able to find a medical professional to help me with all of this. I tried a gastroenterologist, an allergist, my primary care physician, an out of network naturopathic MD, and a behavioral medicine specialist, and none of them were able to help. I had to do it myself, with the excellent resources mentioned above.

7841848bd0c27c64353c583fb7971242

(7275)

on December 08, 2012
at 02:59 PM

Haha, where were you a year ago? :) I did a 23andMe analysis, and eventually found my way to the works of Rich Van Konynenburg, Amy Yasko, and Ben Lynch. I'm dealing with deficient alleles for MTHFR, MTRR, CBS, and more. Following the supplementation protocol has made all the difference, and I'm back up to working 25 hours a week and growing. I need to be at more than 60 hs/week, but at least I'm showing significant improvement. I've got the methylation panel test to run, just need to find a place to draw the blood.

7841848bd0c27c64353c583fb7971242

(7275)

on December 22, 2011
at 02:55 PM

Thanks, this is promising. Hopefully I can find one who is as good as yours!

7841848bd0c27c64353c583fb7971242

(7275)

on December 13, 2011
at 01:22 AM

Thanks, NoGlutenEver!

F1b39d4f620876330312f4925bd51900

(4090)

on December 12, 2011
at 05:09 PM

For my gut issues -I have been to gastero's, acupuncturists, ND's, Osteopaths, nutritionists, etc. Its less about the kind of provider and more about finding what works for you. Quilt is right -do the research yourself and save some money.(In my case A LOT of money).

7841848bd0c27c64353c583fb7971242

(7275)

on December 12, 2011
at 03:32 PM

Update: I talked with the functional medicine MD office and a consult alone would cost $550. And my student insurance doesn't cover that kind of stuff. So, it looks like back to the student health center and keep experimenting with myself, it is.

Cbb1134f8e93067d1271c97bb2e15ef6

on December 12, 2011
at 06:40 AM

Thanks, Grace and all. Yes, IC is the pits...constant pain, aching...not to mention the never-ending urgency...and 40 trips to the bathroom a day. ARGH.

13c5a9f1678d75b93f269cdcf69f14d5

(2339)

on December 12, 2011
at 02:42 AM

If you're having trouble with tiny amounts of gluten, be sure to check in with the gluten zap forum for tips.

7841848bd0c27c64353c583fb7971242

(7275)

on December 11, 2011
at 05:16 PM

From what I've read, it sounds like functional medicine is about gathering information by testing, which sounds ideal to me. I think more info is a good thing. Unfortunately, nuts and legumes are severely problematic for me, so not a good idea!

7841848bd0c27c64353c583fb7971242

(7275)

on December 11, 2011
at 05:13 PM

I've cut out coconut milk for that reason, but was hoping to keep the coconut oil in the mix for the medium chain triglycerides, since I can't tolerate butter or ghee. Lard is a no-go for me, as well, due to a likely pork allergy. I think you're right, though, and the coconut oil warrants a week or two break, at least, to see if it causes any trouble.

724ba4f39f7bbea7f74b45c0a79615f2

(1968)

on December 11, 2011
at 02:34 PM

Re: an elimination diet, I hate to add to an already strict diet, but coconut oil is one of those things that some people have found to be really hard on their gut, so if you think that's a possibility I'd swap it out for olive oil or lard. I tolerate it ok if I'm healthy, but on an empty or iffy tummy it can definitely make my guts explode, and it sounds like your tummy is permanently iffy.

072fd69647b0e765bb4b11532569f16d

(3717)

on December 11, 2011
at 03:03 AM

Thanks for sharing.

3864f9a2af09b1b447c7963058650a34

(3703)

on December 11, 2011
at 12:55 AM

Prof Quilt, I like the idea of an open sourced med school... everything already is with direct-to-consumer lab testing and therapeutics!

3864f9a2af09b1b447c7963058650a34

(3703)

on December 11, 2011
at 12:53 AM

mem, awesome inputs!!! IC is extremely TOUGH. man ur a strong princess.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 10:23 PM

Yeah, it's been a shocker what can have trace amounts of gluten. The TJ's labeling isn't necessarily safe: their gf label just means "no gluten ingredients" but it can have trace amounts if gluten is used in the factory where the food was made. Since I'm making almost all of my own food at home I thought I was safe. But those small things can really get you. Tea is another sneaky spot. I'm so paranoid about my food, though... it makes me sad. I feel like I have disordered eating now because I can't put anything in my mouth without an inquisition. :(

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 10:20 PM

I did find out that Trader Joe's orange-champagne vinegar, which I had started using around Thanksgiving, may have trace amounts of gluten. A couple people on a celiac board said they reacted to it. I also found out that some tea bags have gluten in them. So I seem to be able to react to trace amounts, and that could be setting back my progress.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 10:19 PM

I did find out that the orange-champagne vinegar, which I had started using around Thanksgiving, may have trace amounts of gluten. A couple people on a celiac board said they reacted to it. I also found out that some tea bags have gluten in them. So I seem to be able to react to trace amounts, and that could be setting back my progress.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 10:18 PM

Yeah, I'm totally grain free. My diet is so locked down it's crazy. I've been grain and legume free for 5 months, then removed all dairy, and finally removed even small amounts of nuts after Thanskgiving, along with nightshades and eggs. This has been a process of finding out all the foods I don't tolerate. I'm now on an elimination diet: mostly grass-fed beef, leafy greens (chard, kale, collards), lettuce greens (arugula, spinach, boston lettuce), sweet potato, winter squash, coconut oil, and sauerkraut. On occasion I have some fruit: apple, banana, oranges, cranberries, or blueberries.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 10:13 PM

Oh, and I forgot thyroid... my dad was either hypo- or hyperthyroid. I don't remember which.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 09:55 PM

Though with the diverticulitis stuff, I should add, I don't have abdominal pain and my white blood cell count is within the reference range, though slightly on the high side (9.7, with ref range 3.8-10.8). But I still think it's something good to rule out with a doctor.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 09:49 PM

Yeah, I have really wondered about the lack of tTg antibody response: whether it's a false negative or whether I have gluten intolerance without the full-blown autoimmune component. However, with all my other allergies and asthma and stuff, autoimmunity seems likely. Other things in my family include diverticulitis, pancreatic cancer, depression and anxiety, severe food allergies, fibromyalgia, mitral valve prolapse, weight management issues, Alzheimer's, and asthma. My mom thinks I need to get the diverticulitis stuff checked out, and it's one of the top things I'll ask my doc about.

D5d982a898721d3392c85f951d0bf0aa

(2417)

on December 10, 2011
at 09:45 PM

You've GOT to kill the sneaky trace amounts. You might just be that sensitive - and those trace amounts may very well keep you reacting and in pain. Maybe when you heal up, your body can cope, but now? When you're first going GF because you need to, you need to do it 100% so you stop that immune response.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 09:43 PM

That's a good question. My mom thinks there's something else going on. It's hard to say because all of this started when my dad died suddenly of cancer. So there's a clear stress component. I'm not sure what else my symptoms would match, though. Hopefully the doc will be able to help me uncover it. Taking away foods I may be allergic to has seemed to help, but sneaky trace amounts of gluten have been setting me back.

25b139cc1954456d9ea469e40f984cd3

on December 10, 2011
at 08:24 PM

Could you have celiac *and* something else? Do your remaining symptoms match other conditions?

Cbb1134f8e93067d1271c97bb2e15ef6

on December 10, 2011
at 05:20 PM

For anyone looking for a functional medicine healthcare provider, this can be a good place to start: http://www.functionalmedicine.org/findfmphysician/index.asp

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 04:06 PM

Yeah, really great talk!

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 03:49 PM

My blood work showed an IgA response to gliadin. I didn't have the response to tTg, but I had also been gluten free for a month or so at that point. It is possible I have a gluten intolerance or allergy, but my symptoms match the symptoms for celiac disease and not allergy (http://en.wikipedia.org/wiki/Gluten_sensitivity#Comparative_pathophysiology). Symptoms are long bouts of diarrhea intermixed with constipation on occasion, depression/anxiety, brain fog, fatigue, asthma, overweight by about 30 lbs. I've struggled with stress-induced digestive upsets since I was a teen.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 03:33 PM

I've been doing an elimination diet for 2 weeks now, but found out yesterday that the vinegar I was using, which Trader Joe's had listed on their gluten free list, has trace amounts of gluten. So, I guess that means, I'm starting an elimination diet today. ;P

Ce41c230e8c2a4295db31aec3ef4b2ab

(32556)

on December 10, 2011
at 03:30 PM

Agreed with FODMAPS. Reducing them made a HUGE difference for me. Also, getting my Vitamin D level up to 80 ng/ml--for anyone with suspected autoimmune, it's def worth a try, IMO.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 03:28 PM

I emailed a local functional medicine MD to see about an appointment. They seem like a good place to start.

77877f762c40637911396daa19b53094

(78467)

on December 10, 2011
at 03:15 PM

Thanks for the link to Dr. Mark Hyman- very interesting.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 03:04 PM

A lot of great stuff here, thanks! I think I'm getting antsy as I near the 6 month mark, which is when a lot of people have said they start to feel better.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 02:35 PM

I've been working on that one, but it's making my grad school research in computational neuroscience suffer, and I want to get back to it!

Medium avatar

(8239)

on December 10, 2011
at 04:10 AM

Your dilemma, in my view, is that you need a medical opinion on this. But of course many MDs have no clue. There may be some people here at PH who have the knowledge base to give you sane info, who are not themselves MDs, but I would be very careful if I were you. It is very easy, here at PH, to be opinionated and extremely stupid. I do it several times weekly myself.

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14 Answers

best answer

9
Cbb1134f8e93067d1271c97bb2e15ef6

on December 10, 2011
at 07:31 AM

First of all, be patient. Healing takes time.

I realize that you may feel reading this, that this is easy to say when I am not the one who is suffering and experiencing your symptoms.

However, when I began to grapple with multiple serious health issues that all came on at once over a couple of years, I was suffering alot.

My list includes: ulcerative colitis, interstitial cystitis, fibromyalgia, frozen shoulders, severe PMDD----> depression and anxiety that got to the level where I felt like I was constantly being chased by mastodons, as well as severe sleep disturbance and obesity. Oh and then there was the rosacea that I'd had since age 31 that got MUCH worse...

When this all began in 1997, the mood disturbance/sleep issues were severe enough (never mind living in the bathroom all the time between the colitis and cystitis!) that I took Paxil for a little under two years. I do not regret that because I was getting about zip sleep and coming out of my skin with anxiety, but I paid dearly for it, going from being significantly overweight at 183lbs to between 235-240.

Finally, in 1999 (most of this time period was prior to my having a computer) I had found enough information in very diverse places to know how I was going to go about things. And go about them I did, going "clean" /strict low-carb, finding a source for DHEA, starting a schedule of titration up to high dose O3, getting on a highpowered mutlivitamin and other specific supplements and starting bioident progesterone cream.

And there were a multitude of de-stressing life interventions as well, like cutting my workaholism.

And I healed. But I didn't heal in 5 months...and each of these condiitons responded differently and took varying amounts of time to show some decrease in symptoms....then more...until finally,by 2003 I can say I was about 90% clear. From 99 until 2002 I continued to have bouts of waxing and waning ulcerative colitis.It progressed and changed, but it was still there. By the summer of 02, I was really done with it. But it took 3 years. The interstitial cystitis went through two waning periods and then I had a significant flare-up in the beginning of 02. I had to get very strict about eliminating some foods or drastically reducing them, like nuts, tea and coffee and anything carbonated, EVER. I would strictly eliminate, get better and then my tea intake especially would climb and the symptoms would start again. It was both a healing and a learning process.

And I'd say it was a choice process...as in, how serious am I about getting rid of all this stuff? What am I willing to do to be healthy?

All the joint stuff 100% resolved by 05. Again, there were waxing and waning periods of symptoms. In my opinion, this is not unusual in healing. I think it is also not unusual because as humans, we also slip-up or get in environments where we are not in control of the food, etc and get "surprised-up" by a return of symptoms.

All the PMDD stuff was actually the easiest to kick once I started on progesterone cream and continued for 6 years. But, it too, was a work in progress for at least 2 years into all the dietary and other intervention.

I am healthy as a horse today and have been for some years, with the exception of my rosacea , which is still 75% better than when I started.

I didn't have some of the choices you have now. Take advantage of them!

First of all, as others have stated, there is alot to be found by researching.

Are you familiar with GAPS/ Natasha McBride MD's work?

You sound like someone who really might find most of your answers and effective treatment, which you can learn and self treat with, by going straight to a GAPS certified practitioner, though I'd recommend you do some reading first, as well.

Here's a list of certified practitioners with alot of information as well.

http://gaps.me/preview/?page_id=496

NOTE: Do not be put off by the fact that gut treatment is linked with psychological symptoms/disorders in GAPS. What is being treated is GUT DYSBIOSIS. This also deals with food intolerances and allergies. You have likely seen references to "leaky gut" here or elsewhere and how this causes a wide variety of illnesses. This is what GAPS can effectively target.

Chris Kresser could be a great place to start as well, since wherever you are, he does Skype with patients and he couldn't be more familiar with ancestral diets, nor more flexible, in my opinion. And he's one bright guy and an experienced provider! As well, folks seek out providers like Chris when they have hit all the dead ends in seeking help that they can hit. So, he's very accustomed to working with "mysteries" and what might be considered very hard, untreatable cases in allopathy.

Also understand that there are MDs who are functional medicine Docs. My impression from your question is that you believe that functional medicine is only practiced by non-MDs. This is not true.

Mark Hyman, MD is a functional medicine Doc who has a great video presentation on WHY he practices functional medicine and what functional medicine means. I'll try and hunt it up for you and post it here. Hyman has a website and you can find him on FB as well, just for your own knowledge base.

EDIT: Here's Hyman's excellent TED presentation on functional medicine. It's only 19 min - watch it!

http://danielplan.com/blogs/dp/dp-dr-mark-hyman-treat-the-cause-not-symptoms/

I follow Staffan Lindeberg on Twitter and loved a tweet he shared the other day that was a first person account of man diagnosed with MS in about 1953. He set about curing himself primarily through his diet, which was an ancestral diet except that he strictly eschewed saturated fat and used high pufa oils. He succeeded in curing himself, but it took FOUR years for complete remission of symptoms and he stressed this in his account.

Some people do experience very rapid healing of some conditons. For alot of us, it takes time and I believe that this would be especially stressed by many who deal with gut conditions.

So, hang in there. Persevere .Don't get antsy. Do the research and find someone who is a good fit for you to work with and learn what you need to know.

77877f762c40637911396daa19b53094

(78467)

on December 10, 2011
at 03:15 PM

Thanks for the link to Dr. Mark Hyman- very interesting.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 03:04 PM

A lot of great stuff here, thanks! I think I'm getting antsy as I near the 6 month mark, which is when a lot of people have said they start to feel better.

072fd69647b0e765bb4b11532569f16d

(3717)

on December 11, 2011
at 03:03 AM

Thanks for sharing.

3864f9a2af09b1b447c7963058650a34

(3703)

on December 11, 2011
at 12:53 AM

mem, awesome inputs!!! IC is extremely TOUGH. man ur a strong princess.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 04:06 PM

Yeah, really great talk!

Cbb1134f8e93067d1271c97bb2e15ef6

on December 12, 2011
at 06:40 AM

Thanks, Grace and all. Yes, IC is the pits...constant pain, aching...not to mention the never-ending urgency...and 40 trips to the bathroom a day. ARGH.

best answer

1
922391973104e6f5aa04b4d81a23f99e

on December 08, 2012
at 05:50 AM

I am suffering with the same GI issues that most people here have listed, though no one has listed the MTHFR gene. It is what's wrong with just about everything listed here, and most people don't even know what MTHFER is, let alone the medical community. The only thing my functional MD did right for me was test me for MTHFR; yet I did all of the follow up and additional testing with biochemists. There my friends, are your real answers. I am a registered nurse and my husband is a clinical pharmacist; together we are getting me well on this methylation path. Look up MTHFR on google, and especially check out Dr. Ben Lynch, then Dr. Amy Yasko. Yasko will get you well by clearing the sulfites from your trapped system so that methylation can work properly. If you don't know what I'm talking about, prepare yourself for some undivided study. It will change your life... for all it was meant to be.

7841848bd0c27c64353c583fb7971242

(7275)

on December 08, 2012
at 03:02 PM

Unfortunately, I was never able to find a medical professional to help me with all of this. I tried a gastroenterologist, an allergist, my primary care physician, an out of network naturopathic MD, and a behavioral medicine specialist, and none of them were able to help. I had to do it myself, with the excellent resources mentioned above.

7841848bd0c27c64353c583fb7971242

(7275)

on December 08, 2012
at 02:59 PM

Haha, where were you a year ago? :) I did a 23andMe analysis, and eventually found my way to the works of Rich Van Konynenburg, Amy Yasko, and Ben Lynch. I'm dealing with deficient alleles for MTHFR, MTRR, CBS, and more. Following the supplementation protocol has made all the difference, and I'm back up to working 25 hours a week and growing. I need to be at more than 60 hs/week, but at least I'm showing significant improvement. I've got the methylation panel test to run, just need to find a place to draw the blood.

8
Ed71ab1c75c6a9bd217a599db0a3e117

(25477)

on December 10, 2011
at 04:06 AM

Or you can become a self taught master of your own health..........

I like this one best.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 02:35 PM

I've been working on that one, but it's making my grad school research in computational neuroscience suffer, and I want to get back to it!

3864f9a2af09b1b447c7963058650a34

(3703)

on December 11, 2011
at 12:55 AM

Prof Quilt, I like the idea of an open sourced med school... everything already is with direct-to-consumer lab testing and therapeutics!

F1b39d4f620876330312f4925bd51900

(4090)

on December 12, 2011
at 05:09 PM

For my gut issues -I have been to gastero's, acupuncturists, ND's, Osteopaths, nutritionists, etc. Its less about the kind of provider and more about finding what works for you. Quilt is right -do the research yourself and save some money.(In my case A LOT of money).

4
724ba4f39f7bbea7f74b45c0a79615f2

on December 10, 2011
at 04:26 AM

I agree with the Quilt, honestly, and say try some serious elimination dieting. Generally I'm pro-doctor. Despite my do-it-yourself-answer, I still am, never hurts to have all the advice available, assuming you can afford it.

I don't know what your exact symptoms are, but I've had any number of gastro issues, all pretty new (my gut was a smooth-running machine most of my life, even while living in the rural-est of rural Asia drinking heavily, toxically polluted water), and when things suddenly started going dramatically haywire (extreme pain, digesting virtually nothing), I saw a gastro who just put me on proton pump inhibitors which did, shockingly, nothing. Not that you should avoid one necessarily, I don't think getting an endoscopy is the worst thing in the world.

But one of the awesome parts of PaleoHacks is going through old threads and seeing what others have found. I'd try a pretty hard-core elimination diet, avoiding all the things that give other folks trouble: FODMAPS, gluten (sounds like you have already), all soy, CAFO meat, eggs, dairy, nuts (FODMAPS I'd say is the big one here). And see if that helps for a while, read what other people's symptoms are, then see how you stack up. Hopefully you have an ulcer or a malabsorption issue or even a bit of leaky gut, which all sound awful, but are all curable with a pretty good elimination diet and, once healed, a lot of the foods that gave you trouble won't anymore.

I don't know what others have found, but the gastro basically told me that he could only tell me so many things: (a) I don't have cancer, but very few people have stomach cancer, and so it was so unlikely he didn't even bother testing me, (b) I have an ulcer, which he couldn't help me with (but a diet of nothing but hard cheese for about 4 weeks pretty much cured), (c) I have gastroenteritis, which just means my gut is f*cked up, which I already knew. Essentially, he told me it was a waste of time to see him, and I agree.

Ce41c230e8c2a4295db31aec3ef4b2ab

(32556)

on December 10, 2011
at 03:30 PM

Agreed with FODMAPS. Reducing them made a HUGE difference for me. Also, getting my Vitamin D level up to 80 ng/ml--for anyone with suspected autoimmune, it's def worth a try, IMO.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 03:33 PM

I've been doing an elimination diet for 2 weeks now, but found out yesterday that the vinegar I was using, which Trader Joe's had listed on their gluten free list, has trace amounts of gluten. So, I guess that means, I'm starting an elimination diet today. ;P

2
3864f9a2af09b1b447c7963058650a34

(3703)

on December 11, 2011
at 12:50 AM

Sara,

Like kruse, i believe in open sources of health information. With the internet and several good books out there (GAPS, primal body primal mind, robb wolf, ultramind, many others) and good people, we are rapidly approaching this paradigm, i believe. Do you take the supplelements advised by Robb Wolf in his book and online resources??? My family and my cildren all have problems at this time with gluten. We take the below and have also tried the version from Houston Enzymes (amazon.com):

http://www.iherb.com/Enzymedica-GlutenEase-Digestive-Enzymes-120-Capsules/38589?at=0

http://www.iherb.com/Kirkman-Labs-Enzym-Complete-DPP-IV-120-Capsules/38158?at=0

We also take probiotics, fermented/RAW foods, free amino acids, Omega3 fish oil, Ness brand and NOW enzymes (Platinum and pancrease are good) to help to fully digest carbs, fats, fibers and protein. its not forever just as a bridge until the intestinal lining recovers. we also have mercury and metals which not only disturb the endocrine system but also prevent the intestinal lining and flora to rebound and entirely heal.

Not all functional/integrative docs are paleo and vice versa. but good ones are!!

Have you checked my buddy Christian Wernstedt? He evaluates metals, adrenals, diet, and the gut very thoroughly and has a paleo and integrative approach to healing that I also fully support and endorse, until of course yoy get your PhD in gut health!!!!

http://vitalobjectives.com/services.htm

take care! G

2
D5d982a898721d3392c85f951d0bf0aa

(2417)

on December 10, 2011
at 09:43 PM

Just a couple thoughts. It can take a long while for your gut to heal. Are you totally grain free? Some celiacs can't even tolerate GF certified oats or quinoa. (I know that's not paleo, folks, but we all make choices.) I agree with the recommendation above about a strict elimination diet.

Also, tons of autoimmune stuff and diabetes correlates strongly to celiac. You could have something else going on that needs a bit of TLC. For example, getting my celiac figured out let me finally tell the difference between celiac symptoms and endometriosis symptoms. Now I'm not spinning my wheels anymore because my gut works!

7841848bd0c27c64353c583fb7971242

(7275)

on December 11, 2011
at 05:13 PM

I've cut out coconut milk for that reason, but was hoping to keep the coconut oil in the mix for the medium chain triglycerides, since I can't tolerate butter or ghee. Lard is a no-go for me, as well, due to a likely pork allergy. I think you're right, though, and the coconut oil warrants a week or two break, at least, to see if it causes any trouble.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 10:20 PM

I did find out that Trader Joe's orange-champagne vinegar, which I had started using around Thanksgiving, may have trace amounts of gluten. A couple people on a celiac board said they reacted to it. I also found out that some tea bags have gluten in them. So I seem to be able to react to trace amounts, and that could be setting back my progress.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 10:19 PM

I did find out that the orange-champagne vinegar, which I had started using around Thanksgiving, may have trace amounts of gluten. A couple people on a celiac board said they reacted to it. I also found out that some tea bags have gluten in them. So I seem to be able to react to trace amounts, and that could be setting back my progress.

7841848bd0c27c64353c583fb7971242

(7275)

on December 13, 2011
at 01:22 AM

Thanks, NoGlutenEver!

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 10:18 PM

Yeah, I'm totally grain free. My diet is so locked down it's crazy. I've been grain and legume free for 5 months, then removed all dairy, and finally removed even small amounts of nuts after Thanskgiving, along with nightshades and eggs. This has been a process of finding out all the foods I don't tolerate. I'm now on an elimination diet: mostly grass-fed beef, leafy greens (chard, kale, collards), lettuce greens (arugula, spinach, boston lettuce), sweet potato, winter squash, coconut oil, and sauerkraut. On occasion I have some fruit: apple, banana, oranges, cranberries, or blueberries.

724ba4f39f7bbea7f74b45c0a79615f2

(1968)

on December 11, 2011
at 02:34 PM

Re: an elimination diet, I hate to add to an already strict diet, but coconut oil is one of those things that some people have found to be really hard on their gut, so if you think that's a possibility I'd swap it out for olive oil or lard. I tolerate it ok if I'm healthy, but on an empty or iffy tummy it can definitely make my guts explode, and it sounds like your tummy is permanently iffy.

13c5a9f1678d75b93f269cdcf69f14d5

(2339)

on December 12, 2011
at 02:42 AM

If you're having trouble with tiny amounts of gluten, be sure to check in with the gluten zap forum for tips.

2
13c5a9f1678d75b93f269cdcf69f14d5

(2339)

on December 10, 2011
at 09:24 PM

the tTg wouldn't drop to zero in one month of a GF diet. It often won't drop to zero in one year.

Of course, it could still be celiac as the tests are not perfect.

What conditions run in your family?

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 09:55 PM

Though with the diverticulitis stuff, I should add, I don't have abdominal pain and my white blood cell count is within the reference range, though slightly on the high side (9.7, with ref range 3.8-10.8). But I still think it's something good to rule out with a doctor.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 10:13 PM

Oh, and I forgot thyroid... my dad was either hypo- or hyperthyroid. I don't remember which.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 09:49 PM

Yeah, I have really wondered about the lack of tTg antibody response: whether it's a false negative or whether I have gluten intolerance without the full-blown autoimmune component. However, with all my other allergies and asthma and stuff, autoimmunity seems likely. Other things in my family include diverticulitis, pancreatic cancer, depression and anxiety, severe food allergies, fibromyalgia, mitral valve prolapse, weight management issues, Alzheimer's, and asthma. My mom thinks I need to get the diverticulitis stuff checked out, and it's one of the top things I'll ask my doc about.

1
518bce04b12cd77741237e1f61075194

(11577)

on December 18, 2011
at 01:55 AM

Another note on your possible continuing issues with autoimmune problems: I have a great uncle who has had celiac disease for most of his life (developed as a small child, he is growth stunted), and it sounds depressing but by the time he was diagnosed (after 20 ulcers in his intestine) he had so much epithelial damage that he has never really "fully recovered". My boyfriend also had autoimmune problems as a child, major, major food allergies to almost everything that kept him on breast milk, lamb, and white potatoes only until he was 4, and he has been permanently growth stunted and has never been able to clear up his seasonal eczema and asthma.

That sounds depressing, but it was also empowering for my uncle and boyfriend to realize that all they have to do is manage their symptoms and stop obsessing about eliminating them. They both have extensive intestinal damage, and would require significant, probably surgical, intervention to fix.

Sorry, that is not very hopeful or helpful. Interesting though, and it may be worth getting a doctor or gastroenterologist to assess the amount of damage that has been done to your intestines as a result of celiac disease.

1
518bce04b12cd77741237e1f61075194

(11577)

on December 18, 2011
at 01:50 AM

Sara, I saw a gastroenterologist once, and it was a fantastic experience. I suffer for a number of ailments, and have done since a young age, and he was able to put them in the category of "related to your gut" and "unrelated to your gut", which helped me focus on what I can and cannot control. For me, I have had a series of heart surgeries, but have always wondered if my palpitations could have been solved by treating myself better or something, and he was really quick to shut down that thinking and confirm that I was just doubting myself because everyone wants to diagnose me as an over-reactive panic-y female, when nothing is further from the truth. He was also quick to tie my headaches and weakened immune system into probably being related to my gut.

He gave me lots of options, and was very understanding. He was also very up to date in his literature, we had a good chat about some recent studies we both had read. I had a really good experience with him, and he was really good about calming me down and making sure I wasn't getting too obsessive over my food.

He may have been an exception, but if you haven't seen a gastroenterologist, it may be worth a shot! I also say that as someone who doesn't have to pay for an appointment though, so not sure if that may also be a factor.

7841848bd0c27c64353c583fb7971242

(7275)

on December 22, 2011
at 02:55 PM

Thanks, this is promising. Hopefully I can find one who is as good as yours!

1
A0c3396fcc976cce1e27f037b7fd2c77

on December 11, 2011
at 04:20 AM

If you are going to use functional medicine, I agree with the other posters who say patience is key. Functional medicine is typically a trial and error approach to wellness. It offers the individual the ability to test a variety of methods and see what works. The best advice is to stick with whole foods and lots of vegetables, nuts, legumes etc. Organic food is always a plus.

From there, you have options based on what you are experiencing. The good news is that most functional medicine is incredibly safe, so you can try things without much risk. Study your options, try things and see what produces results. If it is not working, you may want to change it up a bit. Good Luck!

7841848bd0c27c64353c583fb7971242

(7275)

on December 11, 2011
at 05:16 PM

From what I've read, it sounds like functional medicine is about gathering information by testing, which sounds ideal to me. I think more info is a good thing. Unfortunately, nuts and legumes are severely problematic for me, so not a good idea!

1
25b139cc1954456d9ea469e40f984cd3

on December 10, 2011
at 04:17 AM

Are your symptoms specific to celiac, or could they be "any number of things"? I tend to believe it depends far more on the doctor than on the "school" in which they have been educated. I personally would begin with a GI; you do not have to follow his or her recommendations, of course. If you wish to ask for a referral, you might wish to contact to my grandfather--I don't have his email address in front of me, but I believe you could easily hunt it down...

http://lmgtfy.com/?q=joseph+b.+kirsner+

http://simplethrift.wordpress.com/2009/10/20/book-review-gi-joe-the-life-and-career-of-dr-joseph-b-kirsner/

http://www.amazon.com/GI-Joe-Career-Joseph-Kirsner/dp/0615226051

D5d982a898721d3392c85f951d0bf0aa

(2417)

on December 10, 2011
at 09:45 PM

You've GOT to kill the sneaky trace amounts. You might just be that sensitive - and those trace amounts may very well keep you reacting and in pain. Maybe when you heal up, your body can cope, but now? When you're first going GF because you need to, you need to do it 100% so you stop that immune response.

25b139cc1954456d9ea469e40f984cd3

on December 10, 2011
at 08:24 PM

Could you have celiac *and* something else? Do your remaining symptoms match other conditions?

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 03:49 PM

My blood work showed an IgA response to gliadin. I didn't have the response to tTg, but I had also been gluten free for a month or so at that point. It is possible I have a gluten intolerance or allergy, but my symptoms match the symptoms for celiac disease and not allergy (http://en.wikipedia.org/wiki/Gluten_sensitivity#Comparative_pathophysiology). Symptoms are long bouts of diarrhea intermixed with constipation on occasion, depression/anxiety, brain fog, fatigue, asthma, overweight by about 30 lbs. I've struggled with stress-induced digestive upsets since I was a teen.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 09:43 PM

That's a good question. My mom thinks there's something else going on. It's hard to say because all of this started when my dad died suddenly of cancer. So there's a clear stress component. I'm not sure what else my symptoms would match, though. Hopefully the doc will be able to help me uncover it. Taking away foods I may be allergic to has seemed to help, but sneaky trace amounts of gluten have been setting me back.

7841848bd0c27c64353c583fb7971242

(7275)

on December 10, 2011
at 10:23 PM

Yeah, it's been a shocker what can have trace amounts of gluten. The TJ's labeling isn't necessarily safe: their gf label just means "no gluten ingredients" but it can have trace amounts if gluten is used in the factory where the food was made. Since I'm making almost all of my own food at home I thought I was safe. But those small things can really get you. Tea is another sneaky spot. I'm so paranoid about my food, though... it makes me sad. I feel like I have disordered eating now because I can't put anything in my mouth without an inquisition. :(

1
77877f762c40637911396daa19b53094

(78467)

on December 10, 2011
at 04:09 AM

I don't know about the US but in Canada you need a referral from your GP to see a specialist. So if I were in your shoes I would research to see which gastroenterologist would be most Paleo.

0
75d65450b6ff0be7b969fb321f1200ac

(2506)

on December 08, 2012
at 12:51 PM

I agree with many of the above suggestions, especially on self empowerment (ie, become your own expert) and being patient. My experience with gastroenterologists is decidedly mixed. In no way did they accept the notion of a leaky gut being a cause/trigger of autoimmune diseases (in my case, psoriasis). I only received smirks when I said I was on a paleo diet. And indeed, a gastroenterologist will immediately want you to undergo a colonoscopy/endoscopy. HAVING SAID ALL THIS, I think getting "scoped" might not be a bad idea (..don't worry, it's rather safe procedure) just to rule out anything onerous. My GI doc removed a large polyp in my stomach and discovered I had an H. pylori infection. He then prescribed (rather awful) meds to clear the infection, which in turned made me feel MUCH better. I don't think trying to kill off H. pylori is easy to do with alternative strategies.

So in short, gain knowledge, be patient, and carry on what you are doing. But getting scoped by a gastroenterologist wouldn't be an act of weakness on your part. In fact it might indeed be prudent.

_Lazza

0
94cbb913972659c902a348abe8667c12

on December 06, 2012
at 07:04 PM

My husband just recently went to a gastroenterologist in Naperville IL and he is already feeling a million times better. I would definitely suggest going to one over a regular medicine doctor. I think they have better methods of helping you and getting rid of the problem completely.

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