Need advice/guidance after conversation with my GI specialist

[MerBear]

I have been living a pretty healthy post W30 lifestyle for the past 2-3 years. I have done 3 W30's in the past 3 years. In the past two years I have had chronic diarrhea and digestive pain, with it getting much worse in the past 3 months. I am working with two MD's...one in Kaiser and one outside of Kaiser, who uses a far more holistic approach -- even though the Kaiser Md is delightfully more progressive than most. My Kaiser MD referred me to a GI specialist after hearing my complaints and after blood work had a celiac test come back slightly elevated. The GI specialist wants to to a double oscipy (at least that's what I call it)....endoscopy with a biopsy of the small intestine, and a colonoscopy....at the same time, to rule out Collitis, Celiac Disease and Chrons Disease. My biggest concern of all of this, I have to eat gluten -- and from the sound of it, lots of it -- for the next 3 weeks. I already know that gluten causes me a bunch of discomfort (pain, bloating, digestive issues, emotional troubles and brain fog), but from what I understand, there is not a way to do these tests properly without doing so. I'm torn -- my holistic MD says I can also just forego the tests and the discomfort, OR I can have my insurance actually pay for something to properly and medically rule it out.

Any feedback? Why would any of you do??

Thanks in advance!!

[SugarcubeOD]

I would have my insurance pay for something that didn't involve torturing myself for 3 weeks... but that's just me...

What would having Chron's Colitis and Celiac ruled out mean? Are they concerned about something much more serious?

[MerBear]

Good question. I don't know. The Specialist was respectful enough to say she wanted to do a thorough work up to rule stuff out without labeling it "irritable bowel syndrome" and calling it a day.

I have been dealing with some pretty intense abdomen pain in the past 2 years -- 2 CT's, now food testing and this opportinity has come up. That's basically where I'm at.

[jmcbn]

I had both 'oscopys' done in the past and STILL got an IBS diagnosis.

Personally, if I knew that eating gluten (for 6-8wks 'cos that's what it is in the UK) put me in a lot of pain I wouldn't bother with the tests - you know that gluten is problematic, and you don't need a test to tell you that.

 

You say you've been living a pretty healthy post W30 lifestyle - what does a typical day of food look like? Did you ge a full blood screening? What else did it show?

Also, since this type of medical care is usally taken care of by the NHS I'm always sceptical when I hear folks in the US saying their Drs have requested this & that test - sure your insirance is paying for it, but they're still getting their money...

Endoscopys & Colonoscopy's are invasive - I'd ask if they're really necessary.

[MerBear]

Typical day of food:

Meal 1: spinach, avocado, banana, collagen protein, water, glutamine

Meal 2: ground beef, avocado, cucumber

Meal 3: salad with chicken, olive oil, sesame oil, coconut aminos, rice vinegar

Snacks (if any): chicken breast, veggies

Blood tests returned deficient in Vitamin D, Vitamin B, all thyroid functions normal (I have a goiter though, go figure), everything else other than celiac levels were within normal limits.

Insurance in the US -- especially HMO where everything is included -- can be limited when dealing with treatment requiring tests as it cuts from Theo bottom line, and the MD's in and HMO are all part owners, so they all get a cut of the bottom line.

Sitting in this overnight....my Grandmother on my mom's side died of colon cancer....perhaps they are being more proactive for that reason as well?

[Karen_Suep]

From personal experience, having a non superprocessed protein for breakfast helps me out tremendously more than collagen (although it's *technically* compliant). It doesn't have to be eggs, though, it could be leftovers or a compliant sausage. I've been known to grab a cold dinner sausage that was leftover from a previous meal, a bunch of cold veggies and add some mayo for M1 because I honestly am not a big fan of breakfast foods all the time.

[jmcbn]

Typical day of food:

Meal 1: spinach, avocado, banana, collagen protein, water, glutamine

Meal 2: ground beef, avocado, cucumber

Meal 3: salad with chicken, olive oil, sesame oil, coconut aminos, rice vinegar

Snacks (if any): chicken breast, veggies

Blood tests returned deficient in Vitamin D, Vitamin B, all thyroid functions normal (I have a goiter though, go figure), everything else other than celiac levels were within normal limits.

Insurance in the US -- especially HMO where everything is included -- can be limited when dealing with treatment requiring tests as it cuts from Theo bottom line, and the MD's in and HMO are all part owners, so they all get a cut of the bottom line.

Sitting in this overnight....my Grandmother on my mom's side died of colon cancer....perhaps they are being more proactive for that reason as well?

Quite possibly....

 

Have you/your GI Specialist thought about malabsorption/leaky gut? Have you ever reduced FODMAPs? 

Is your digestive pain upper or lower?

[MerBear]

My outside of my insurance MD said yes most likely leaky gut. Pain is mostly upper abdominal, although I have recently had lower abdominal pain as well.

I have reduced FODMAPs and have still had the same symptoms.

[tmhampton1]

Do you notice a difference in the pain when you eat high fat foods? Just thinking it could be your gall bladder. 

[jmcbn]

My outside of my insurance MD said yes most likely leaky gut. Pain is mostly upper abdominal, although I have recently had lower abdominal pain as well.

I have reduced FODMAPs and have still had the same symptoms.

Has any one ever suggested the Specific Carbohydrate Diet?

[LucieB]

MerBear last year I went thru all of this from gluten challenge to the tests to scopes and SCD. I'm not comfortable posting it in public forum, so PM me if you want to chat. Anyone else also welcome to ask me. And I think we can do multiple people conversations? Im open to that.

[MerBear]

Has any one ever suggested the Specific Carbohydrate Diet?

No they haven't...I'll look into it -- thanks!

[MerBear]

MerBear last year I went thru all of this from gluten challenge to the tests to scopes and SCD. I'm not comfortable posting it in public forum, so PM me if you want to chat. Anyone else also welcome to ask me. And I think we can do multiple people conversations? Im open to that.

Thanks LucieB, I sent you a PM.  Thanks!

[MerBear]

Just an update, 

 

First off, thanks to all who posted and asked questions...I'm open to more as they come as well.

 

I emailed my doctor to ask about exactly what else they are trying to rule out, and I also expressed my concern of having so much gluten...it felt like such a huge backslide, having 'several pieces of bread a day.'  She emailed me back and said I was fine to have 'a little bit of gluten each day.'  That said, I feel much better in moving forward with the tests.  

 

Thanks again everyone.  

[tiva]

I'd also consider asking your doctors to test for SIBO (small intestinal bacterial overgrowth, also known as bacterial overgrowth syndrome). It's the cause of many cases of IBS, and it's treatable with antibiotics (and a low FODMAP diet). It causes many of the symptoms you're experiencing.

 

The test is simple but many docs haven't heard of it:  it's called a lactulose hydrogen/methane 3 hour breath test. It's not at all expensive, but  because doctors have to order out for it, they can be very reluctant to order it. I went through 9 months of increasing pain, endless invasive tests costing $15,000 (all the ones they want for you), and increasingly limited dietary choices, before I finally persuaded a nurse practitioner to prescribe me the test (which only cost $150 and the antibiotics--called rifaximin-- are free with a savings card; $2000 otherwise). 

 

Good luck! Here's a reliable source of info on SIBO: http://www.siboinfo.com/overview.html

[praxisproject]

If they're trying to rule out celiac, a "little bit of gluten" isn't going to give a valid test result.

The purpose of the test is to damage your insides and then view the damage. Limiting the level of damage means it's harder to see and you may get an inconclusive result.

 

I had a really rough ride trying to do my "gluten challenge" after being gluten free for some time and it took me 3 months to recover from the 8 days I was able to complete (not enough for a biopsy).

 

There is a gene test for celiacs, which doesn't rely on you ingesting gluten. It isn't definitive, but if you don't have the gene, it's unlikely you're celiac.

 

Have you been eating gluten the last couple of years?

Have you ever been tested for MTHFR? (often low in vitamin B family and correlated with celiac)

Do you only need gluten for the celiac test or the others too?

[Bywater]

If you have Crohn's, then you need to know.  I've got a friend who has it and did marvelously for a long time by avoiding gluten then he went downhill and is now on injections along with being gluten free.  It will suck, but better to know now than risk a more invasive autoimmune issue.

[TaraTall]

Fortunately here in Canada, most of these things are covered. 

In my road to diagnosis, I was given a positive test result for Celiac but an inconclusive biopsy result. My best guess is this was because I did "a little bit of gluten' versus the self harm of 3+ weeks of gluten overload. 

 

That being said, if I understand correctly, in the US you might need a tangible diagnosis before you can get insurance coverage or even some reimbursable taxes to cover the higher cost of food (should you choose to do a lot of GF replacements). Again, Canada here so i'm not totally clear on that process.

 

As Bywater mentioned though, I think it would be good to go to ensure you rule out the other more serious conditions of Crohn's and UC. 

 

Good luck,

 

ETA: The scopes aren't pleasant but they weren't *THAT* bad for me, it was the prep that was bad. Golyte can die lol