Even gluten-free Foods Triggering Reaction After Initial Glutening?

[jddh]

JD,

I am so sorry! Is possible to get a second opinion? Did the new GI doc offer any treatment to relieve you of some of your symptoms? Did you actually see the biopsy results?

Thanks for replying. I suppose I could seek a second opinion, though this was done by the putative top brass at my city hospital. I would tend to trust their lab, much as I would rather hear other news. I've seen my visual endoscopy—there's some duodenal flattening, but no ulceration or other visible nastiness. It presents as though I've been allowing a little gluten in my diet, though I have most certainly not actually done this. gluten-free for years. That fits the diagnosis.

 

He put me on budesonide right away—corticosteroids to bring down the inflammation & hopefully symptoms. First dose today. Fingers crossed. Priority one is to feel better after eating, and thus eat more & gain weight back.

 

They're also checking everything else—capsule endoscopy to see the whole tract, CT scan, SIBO, pancreatic function/elastase. Didn't hear about gallbladder investigations, but I'll ask him next visit. I'm going to be seeing him every four weeks and there'll be lots of tests to maintain status. I think that the presence of abnormal clonal lymphocytes locks me in to this diagnosis, but I'm not certain. There's a lot more to learn and I'm not ready to read yet.

 

The really good news is, as you can see in this thread, I only started getting sick three months ago. That means the only noticeable refractory activity has been for a few months, IE. I started feeling as though I was eating gluten. Turns out I was spot on. Anyway, I think that's in my favour. Moreover, after waiting for help for too long, I'm now on the "inside" at the big general hospital here. It's connected to the local university and there are doctors in every specialty working out of the same building. They hold weekly forums and I potentially have access to who I need for help.

 

So it's been caught early, and I'm being helped. I don't have lymphoma. I'm not going to get it. I'm scared, but hopeful, and glad to be taken care of. I have a good support network, and I'm optimistic about the 'roids working, and getting on with my life.

[icelandgirl]

I'm so sorry to hear that. ((Hugs))

I hope that the medication will help quickly.

[jddh]

I'm also getting ready to round up and re-examine diet VERY carefully. It's almost inconceivable that I'm ingesting any gluten, but it's time to get damn sure.

After that, despite my careful analysis of my diet today, I'm going to have to take it apart and put it back together, challenging specific ingredients and looking for triggers. The academic literature doesn't have a whole lot to say about this after folks don't respond to a GFD (I seemed to respond for quite a while, years in fact, thus making me "secondary RCD"). I gather there isn't much info on this because folks' individual triggers aren't easily detectable. Or, there aren't any particular triggers at all. Hope that's not the case. There's always the elemental diet...

[kareng]

I'm also getting ready to round up and re-examine diet VERY carefully. It's almost inconceivable that I'm ingesting any gluten, but it's time to get damn sure.

After that, despite my careful analysis of my diet today, I'm going to have to take it apart and put it back together, challenging specific ingredients and looking for triggers. The academic literature doesn't have a whole lot to say about this after folks don't respond to a GFD (I seemed to respond for quite a while, years in fact, thus making me "secondary RCD"). I gather there isn't much info on this because folks' individual triggers aren't easily detectable. Or, there aren't any particular triggers at all. Hope that's not the case. There's always the elemental diet...

Did you get a positive biopsy? I Think that's how they diagnose refractory? Might check into the "Fasano" diet. Basically, whole foods with minimal processing for a few months. Then people with " refractory Celiac" were able to expand their food choices.

[jddh]

Yes, biopsy confirmed. Abnormal lymphocyte phenotype yes, clonal t cells no, lymphoma no.

 

Thanks for all the great diet links. Commence my research!

[w8in4dave]

Thanks for all your thoughtful ideas. Definitely feels like pancreas or gallbladder could be in play. Waiting on serum tests & upcoming ultrasound that will hopefully speak to those possibilities one way or another. The internet is both a helpful and terrifying source of possible diagnoses; not to be taken seriously outside of medical help, but what else can you do while waiting for tests and appointments? Folks like us are certainly at risk for all sorts of colourful problems.

 

Very frustrating and slightly depressing to play the waiting game...getting a positive celiac diagnosis years ago was such a relief; going gluten-free was mostly a joy, knowing and confirming that I'd soon get better.

 

This week I'm trying over-the-counter digestive enzymes. Might help and I don't imagine it could hurt.

What eles you can do to while waiting for for test and appointments? Take up a hobby! Start crocheting or knitting, painting, reading good books. Don't scare yourself into anything. The net can be a scary place. Let the Drs. do their job. Give them your ideas and such and tell them you have read up. But the test's will tell. you can drive yourself crazy thinking what it could be, but it may not be so all the worry will be for nothing. Or it could be, but worrying is not good for your health. Get a cup of tea, get on the net and look at funny things. Don't dwell on what might be. I hope they find the right answers and start feeling better soon. But really take it easy sweetie! 

[jddh]

Folks, I have a crazy update.

 

I went to Rochester MN to the Mayo to see Dr. Joseph Murray, one of the world experts on celiac disease. 

 

He looked over my last biopsy slides and ordered some deep tests; things I've been waiting months for in Canada.

 

He concluded that my GI tract is 95% healed, full of healthy villi. 

 

I DON'T HAVE REFRACTORY celiac disease. Neither type 1 or 2.

 

My home GI only saw abnormal lymphocytes at the very tip of my duodenum—the only part where there was damage—and hadn't yet looked further. No one here knows about RFCD, so they went with the academic literature and diagnosed the worst.

 

However, I just came back from seeing the guy who is the primary author on most of that literature. And he assures me I'm not a candidate for RCD. Either I never had further damage, or taking budesonide for < six weeks has worked well.

 

I still have nausea, and he suspects it's a motility disorder or non-ulcer dyspepsia stemming from my upset in the summer, both of which are common with celiac disease. He's suggested making sure my stomach is never fully emptied (small, frequent meals), trying domperidone for motility, perhaps trying Creon/lipase if expanding my diet back to normal gives me problems.

 

My family and I are ecstatic. I just got my life back. Symptoms are still frustrating, but man it's a different story knowing the nausea isn't causing pre-malignant damage.

 

I cannot recommend Dr. Murray at the Mayo enough. He is a kind and thorough physician with encyclopedic knowledge, who has literally changed my life.

[icelandgirl]

Wow! Amazing news...congratulations!

I'm curious about not letting your stomach get empty. Do you know why? I'm asking because I've noticed I feel really bad if I let mine get completely empty...but no idea why.

[1desperateladysaved]

I am so glad you were able to get help and wish you the very best in healing.

 

Dee

[beth01]

That's awesome! What a way to ring in a New Year.

[cyclinglady]

I must have been asleep at the wheel and missed your update!

Congratulations! I am so happy for you.

[jddh]

Little update: still feeling about the same darn way I’ve been feeling since August ’14. A bit of a letdown from the relief at the Mayo of having that scary diagnosis reversed. Still grateful for that, of course, but still very much wanting to get back to my life. Chronic nausea is really preventing that from happening.

 

Domperidone brings on my symptoms sooner, and the spells of nausea go away faster. So that’s something. I also think that cotazym (Creon) helps with fatty meals. However, ultrasound, CT enterography and fecal fat test all showed no sign of pancreatic problems. Maybe a placebo effect.

 

Medical cannabis is fairly helpful for symptom relief, but it’s fiddly to dose and I prefer to not be stoned.

 

I’m SLOWLY gaining weight thanks to a calorie mix called Scandi Shake. It’s very helpful in making sure I get in enough calories for the day, though the mix itself tends to give me strong symptoms. It happens to be milk-based, but I don’t think lactose intolerance is the issue (plenty of lactose-free food makes me plenty ill).

 

I just finished tapering off the last dose of budesonide, which I had been taking in some quantity since my refractory diagnosis. I found my body’s withdrawal from the steroids to be fairly rough. I’m going to be vigilant about my symptoms for the next while as I go without immunosuppression, making sure the inflammation doesn’t come back. At some point I’ll get another biopsy to confirm this. It’s a nasty “what-if” to keep thinking about, and I wish I could just turn that worry off. There’s no good reason to think that the inflammation or flattening would come back; I’ve certainly been more careful about avoiding gluten now than ever in my life. Moreover, I felt essentially as I do now (re: nausea) back in early December, where a fresh biopsy and capsule endoscopy showed clean villi throughout my gut.

 

So it’s pretty clear I have nausea regardless of the status of my mucosal healing. I’ve had a couple of general blood panels done since the Mayo and everything is well in the norm.

 

I know that functional dyspepsia and a whole lot of gut problems can be stress-triggered. I had gluten accidents in the South back in mid-2014 when this all started, and my persistent chronic nausea has certainly been a source of constant stress. I’m not sure what else I can do to reduce stress—not getting nauseous all the time would be a great start! The diagnosis of RCD2 was sure frightening, and I think it’s fair to say that I’d been a bit traumatized there. Nausea often is still connected to inflammation/damage/malignancy in my mind, and I’m sure that if stress is a factor, that sort of thinking makes it worse. One more clean biopsy, and I think I can convince my anxious self to let that connection lie, once and for all.

 

Moreover, I’m aware that motility disorders and general functional disorders are hard to track down and eliminate, so perhaps I shouldn’t be surprised at the dead-ends I keep hitting.

 

I keep wanting my blood tests to come back with something weird, just to give a hint of what could be wrong. I know a lot of us have been there. Wanted a new thyroid test; just got one and TSH was again normal. I wonder about getting another SIBO test—the one I got was with glycocholic acid, and I hear the other kinds of catalysts might be of better sensitivity. But then again, as far as I know my villi are restored, and I rarely get diarrhea.

 

So it goes. As the months go by, I think less about how life used to be (just seven months ago!), and more about this being the new normal. It’s a sad line of thinking.

[jddh]

Wow! Amazing news...congratulations!

I'm curious about not letting your stomach get empty. Do you know why? I'm asking because I've noticed I feel really bad if I let mine get completely empty...but no idea why.

 

I'm sorry, I neglected to reply to your question. I've been told vague answers by GIs that the stomach can get lazy if not put to constant work, so especially in a case of reduced intake, it's better to keep it a little bit busy most of the time. I would theorize that leaving your stomach empty for longer periods likely also produces stomach acid with nothing in the stomach to absorb it, which can certainly be a cause of discomfort.

[jddh]

Still here, still nauseated. What a stubborn problem!

 

I went on a two-week vacation to Hawaii noticed marked improvement: many meals would produce no reactions at all. Hooray! This persisted for at least a couple weeks after returning home, and I took the opportunity to re-boot my life, getting back into cooking yummy, completely gluten-free food, exercising, acting like a normal person albeit having to endure nauseous periods after eating.

 

My home GI is assured, given my visit to the Mayo and many months of stable bloodwork since, that I’m dealing with a functional issue that is linked to stress. Indeed, as I’ve noted before, the same meal can sometimes cause me no trouble, and sometimes quite a bit of discomfort. From my subjective position, stress is clearly one of the factors that can make the difference.

 

The challenge is, the real stress of my life right now is getting sick all the time! It’s a vicious circle. So I’m getting my head around changing my thinking about getting sick; letting it happen without worrying me. Ironic as it sounds, accepting my symptoms as an annoying but harmless part of life, for this time, might very well make those symptoms subside.

 

I’ve relaxed my thinking about needing to get another scope; the fact is that there’s no medical reason to pursue this. And indeed, scopes and waiting for biopsy results are probably the last thing I need as I try to reduce stress and anxiety about my symptoms.

 

The other thing that has become clear is that during the years approaching this acute period of symptoms, I was continually eating some small, hidden gluten. Nothing macroscopic, but I had been a bit cavalier about soy sauces, bulk spices, randoms like worcestershire sauce, etc. Though I understand now that symptoms and damage aren’t necessarily 100% related, at the time I figured if I wasn’t getting sick, I was ok. It’s clear to me now that I should have been more careful, and this gradual accumulation—perhaps—of inflammation, plus lots of stress, might have triggered this functional problem. This is fairly common, according to Brilliant Doctor at the Mayo. It would also explain why I had a bit of villous flattening from my first scope last year, which ultimately lead to that wrong-headed diagnosis. If I knew then what I know now...

 

I wanted to note that I eventually went off of the Scandishakes I had been recommended. They were instrumental to getting a bit of weight back on when I was in crisis mode, but eventually my liver enzyme levels started to climb. I was starting to get a fatty liver! This is laughable for a 105 lb person. Discontinuing the shakes and leaning instead on normal, healthy gluten-free food quickly brought my liver levels back to normal.

 

So I’m on my way to becoming a mindful Zen-master who is not waylaid by his gut issues. If any of you know how to do this, please let me know

[beth01]

I'm sorry you're still feeling nauseous.  It's frustrating when you're not feeling well and can't pin it down to what is making you feel so awful.  I'm kind of in the same boat, I've been feeling sick for the last three months, thought it was my pills making me sick, switched them and felt good for about a week, but now I feel like crap again.  Can't figure out why.  Drives a person insane.

 

Good luck in your Zenability.

[GF Lover]

 

Still here, still nauseated. What a stubborn problem!

 

I went on a two-week vacation to Hawaii noticed marked improvement: many meals would produce no reactions at all. Hooray! This persisted for at least a couple weeks after returning home, and I took the opportunity to re-boot my life, getting back into cooking yummy, completely gluten-free food, exercising, acting like a normal person albeit having to endure nauseous periods after eating.

 

My home GI is assured, given my visit to the Mayo and many months of stable bloodwork since, that I’m dealing with a functional issue that is linked to stress. Indeed, as I’ve noted before, the same meal can sometimes cause me no trouble, and sometimes quite a bit of discomfort. From my subjective position, stress is clearly one of the factors that can make the difference.

 

The challenge is, the real stress of my life right now is getting sick all the time! It’s a vicious circle. So I’m getting my head around changing my thinking about getting sick; letting it happen without worrying me. Ironic as it sounds, accepting my symptoms as an annoying but harmless part of life, for this time, might very well make those symptoms subside.

 

I’ve relaxed my thinking about needing to get another scope; the fact is that there’s no medical reason to pursue this. And indeed, scopes and waiting for biopsy results are probably the last thing I need as I try to reduce stress and anxiety about my symptoms.

 

The other thing that has become clear is that during the years approaching this acute period of symptoms, I was continually eating some small, hidden gluten. Nothing macroscopic, but I had been a bit cavalier about soy sauces, bulk spices, randoms like worcestershire sauce, etc. Though I understand now that symptoms and damage aren’t necessarily 100% related, at the time I figured if I wasn’t getting sick, I was ok. It’s clear to me now that I should have been more careful, and this gradual accumulation—perhaps—of inflammation, plus lots of stress, might have triggered this functional problem. This is fairly common, according to Brilliant Doctor at the Mayo. It would also explain why I had a bit of villous flattening from my first scope last year, which ultimately lead to that wrong-headed diagnosis. If I knew then what I know now...

 

I wanted to note that I eventually went off of the Scandishakes I had been recommended. They were instrumental to getting a bit of weight back on when I was in crisis mode, but eventually my liver enzyme levels started to climb. I was starting to get a fatty liver! This is laughable for a 105 lb person. Discontinuing the shakes and leaning instead on normal, healthy gluten-free food quickly brought my liver levels back to normal.

 

So I’m on my way to becoming a mindful Zen-master who is not waylaid by his gut issues. If any of you know how to do this, please let me know

 

Hi JD.  Two thoughts for you.  Stress can definitely make you sick.  Stress can lower the immune system all by itself.

 

https://www.yahoo.com/health/from-the-brain-to-the-immune-system-how-stress-118300620327.html

 

Mindfulness is the perfect place to start.  The link has the basics of what it is.  

 

https://en.wikipedia.org/wiki/Mindfulness

 

Good Luck, Colleen

[jddh]

Thanks as always, Colleen and Beth, for your thoughtful responses. It's both a relief and a frustration to identify stress as a causative factor—there's no stress-free diet to follow; no pill to take! It's a management issue, and it takes time. I'm sure it's going to get better for me, but it's going to take some real work, and in a sense a bit of re-wiring. As a naturally health-anxious guy who went through a traumatic experience of misdiagnosis last year, these skills will no doubt benefit me for years to come.

 

I wanted to share a brand-new finding that my GI shared with me. They've just discovered a much more concrete connection between the brain and the lymphatic system, extending the "brain-gut" connection to immunology. This ought to make a lot of intuitive sense for those of us that developed overt celiac disease after stressful periods (me), and perhaps also for folks that find stress to create problems despite a gluten-free diet.

 

http://neurosciencenews.com/lymphatic-system-brain-neurobiology-2080/

 

Really fascinating news.

[notme]

i have a script for xanax.  i don't take a whole lot of it and only a little at a time (like i break the tablet into 6 pieces and eat 1 every few hours - i originally got it for traveling and the dosage is 1/2 tablet who needs a plane lolz - GI doc said to use it to help with D during stress) when i'm stressing.  the worse part is realizing i'm stressing when i'm stressing.  I'M A LITTLE HIGH STRUNG and i have a naturally high metabolism - like you, i start losing the weight i can't afford to lose!   sure wish they would legalize cannibus here - helps with the appetite and stress, both. 

 

been following this thread - i sure hope you feel better

[jddh]

You're right, there are pills for stress I take a small daily dosage of clonazepam, and a mid-level dose of mirtazapine. Both make a difference, and that's one more brick in the stack that explains this as deeply stress-related. I'm reluctant to take more benzos given they're addictive, though indeed, doubling my dosage for flights or intense periods totally helps.

 

I never found mirtazapine to be all that useful for anxiety/stress, but it is certainly helpful for getting good sleep, and that is a welcome effect. 

[notme]

mine is generic:  alprazolam.  i've got a pretty healthy fear of addiction, so, only use it under duress.   there were tons of other meds that my docs have thrown at me pre-celiac diagnosis - they all knocked me out.  even the one they gave me for increasing my appetite:  well, you can't eat if you're sleeping at the table, lolz.  

 

it's been trial & error for me.  trying different combinations of things - at night i take a probiotic and zyrtec (to keep the allergies away), probiotic/digestive enzyme combo in the morning with breakfast, digestive enzyme with every meal or large snack....  seems to be working.  a little xanax here and there.  stay calm....  <sometimes it sounds like a shout lololz    

 

i would add that hormones don't help the mix, but as a male in your 30's probably menopause isn't part of your problem LOLZ

[jddh]

Brilliant Doctor was kind enough to reply to my status email; confirmed his suspicion of an "acquired motility problem" and asked if I've tried Buspar. Hmm...more anxiety meds. Not certain I can safely mix that with Mirtazapine.

[jddh]

So I got tested again, and bad news is I had some partial villous atrophy in December. Damn. However: (1) I had a big gluten mistake in October, about six weeks prior to the scope; and (2) they redid the full workup, and this time I DON'T have evidence for abnormal lymphocytes, nor a monoclonal T-cell response. According to the doctor...it just kind of looks like I've been eating gluten.

Very frustrating. I have some doubts that a single glutening a number of weeks prior could cause that much inflammatory change on pathology. But I really am not qualified to say. Doctor said make sure I'm strictly gluten-free moving forward, and I'll get tested again 6-8 months from now.

I'm relieved that I don't have any relatively serious abnormalities on pathology, but the inflammation is vexing. I was really looking forward to not having another scope and testing coming up.

As ever, as I guess many of us often are, I need to ask myself the question: could I still be screwing up my diet on a regular basis!? I'm rather doubtful. But of course I'm going over it all again. I'm also going to do a FODMAP restriction for a couple weeks in order to see if that could possibly help my symptoms. I really don't know if my symptoms have any direct relationship with the inflammation, and as far as I know, there's no scientific evidence for any other protein being a known trigger for an immune response for a weird subset of us folks. But I'm willing to try anything to feel better.

[SLLRunner]

This is all very interesting.  @jddh, it sounds like you have been through the ringer these last few years. I hope you are feeling better soon. 

[cyclinglady]

I was glutened in July.  Badly.  I have NO clue as to what got me.  I suspect two things 1) a gluten free store- brand, product that might have been mis-labeled and 2) a prescription generic medication (contacted the manufacturer to confirm a gluten-free status but got the old liability statement of no guarantees).  Both items were NEVER consumed by my gluten free hubby who acts as my canary.     I probably got glutened again by eating out while on vacation even though I only at at restaurants recommended by other celiacs.  The rest of the time I was at my parent's house and I have a dedicated kitchen there for us.   Who knows?  But I was sick with anxiety, tummy issues, vomiting, the works.  It was strange since anemia was my original symptom and I really did not have tummy issues at the time of my diagnosis.  So, celiac symptoms can evolve at least for me!  Six weeks after my first sign of a glutening, I was tested by my new GI because I was not getting well.  He thought I had SIBO or bile duct issues. I asked for celiac blood testing.    Turns out it was gluten all along!   During my glutening, I became lactose intolerant again, could only eat stewed foods because everything hurt to get through my digestive tract.   I was a basket case for three months.    Did I mention new problems resulting from my glutening?  Hives, itching, vomiting, passing out and tummy aches almost daily.  Anti-histamines helped.    My GP thinks I am her most "allergic" patient.  Except it was more like a histamine intolerance or a mast cell issue not allergies.   Who knows?  The hives eventually resolved as I healed from my glutening.  

 I refuse to test the two items that were suspect.    No way!    Three months later, I got dairy back.  Six months later I am eating gluten free anything....without any issues.  I also do not take any meds (except for Armour Thyroid) , supplements, eat out and I avoid even processed gluten-free items.  But, I feel great.    

I suppose that I will eventually slip up and get glutened again.  But I am working hard not too.  I like feeling well.  

So, really look to your diet.  I bet you just keep getting glutened.  Stick to whole foods, follow the FODMAP diet and wait.  Wait.  Wait.  

 

[jddh]

@cyclinglady—so glad to hear you're on the mend!! That's encouraging.