Even gluten-free Foods Triggering Reaction After Initial Glutening?

[jddh]

Hi friends,

 

Looking for insight into a difficult-to-search-for topic. Apologies if threads already (likely) exist.

 

I am a celiac dealing with heightened gastro sensitivity after a general period of accidental glutening. Not surprising there; but here's the odd part. Not only do I generally feel worn out and have a burnt-out gut (expected symptoms for me), but I find that sometimes meals that are clearly gluten-free can trigger a full gluten reaction during this heightened sensitivity.

 

The reaction generally isn't as bad as if I had actually ingested some gluten, but nonetheless this happens with food that normally ought not to trigger a reaction.

 

The window for this to happen to me seems to be a few days after getting glutened. I haven't been able to narrow down exactly what type of food causes this "secondary" reaction—current guesses are things that are fairly fatty—meat, cheese etc.

 

I haven't been able to find much literature about this—intel gets spotty after general descriptions of the celiac autoimmune reaction. I don't have any local resources and so I don't know how common this is. I would love to hear from you if you have similar reactions. I am used to the discomfort around mistakenly eating gluten, but I am most distressed to find that I am getting symptoms from food that ought to be OK.

 

Thanks for your time!

[CajunChic]

After a glutening, everything seems to make me sick. I stick to whole, bland, single ingredient foods for a few days. My go-to-- grapes and green beans, sometimes ham. Lame, yes. But it's all I can handle when sick. I think it's totally normal to not tolerate foods you usually can when you're inflamed. I'll throw in a baked sweet potato-no toppings when it lasts a while.

Hope you feel better and find what works for you through a glutening!

[beth01]

I was glutened two weeks ago and yesterday my stomach started this, everything I eat no matter what it is makes me feel like crap.  I wish my stomach had a reset button. I hope you figure it out and doesn't last too long.

[dilettantesteph]

It could be exocrine pancreatic insufficiency caused by the glutening.https://www.celiac.com/forums/topic/105648-exocrine-pancreatic-insufficiency/?hl=%2Bexocrine+%2Bpancreatic+%2Binsufficiency

[nvsmom]

It could be other food sensitivities too.  Dairy, apples and pears give me sharp stomach pains similar to gluten.  Sometimes coffee will do it too.  A food and sympoms journal might help identifying another sensitivity if that is the cause.

 

Best wishes.

[kayoung4]

I find that big meals make it worse after I've been glutened because feeling full triggers an even worse bloating feeling - like I'm about to pop! So I try to eat little, mostly-bland meals for a few days.  Munching on nuts and gluten-free crackers and things feels better for me.  But everyone's different, so that's just a suggestion.

[chocominties]

Fat is difficult for the body to process, and an inflamed gut is going to have even more difficulty.  I see a lot of folks blame gluten for bad GI symptoms after they went to a restaurant where they consumed a large quantity of high-fat food.  Fatty food is delicious, yes, but it doesn't need to contain gluten to make you sick.

 

Personally, I also get really bad fatigue/drowsiness after I eat anything that's full of carbs (but not exceptionally high in fat), to a point where it's like someone drugged me.  Again, not gluten, but just another fun bodily reaction to food. 

[cristiana]

I was glutened albeit in small amounts twice in the last two weeks.   Yesterday I had a potato salad and an iced lolly at the local swimming pool - we don't usually get much hot weather here in England during the summer months so one has to make the most of it! - and I felt queasy within half an hour of eating, really like the bad old days just prior to my diagnosis.  I am quite sure it was down to the gluten earlier on in the week.   

[jddh]

Thanks for your generous ideas folks. Man, it's funny how dealing with and questioning symptoms and reactions can become a "back burner" issue for oneself when the pain subsides. But a few weeks later, I find myself in agony again after eating what should have been a safe meal. Certified gluten-free soup and rice flour bun! Raw tomato and red pepper! These are usually not trigger foods for me. Granted that bun was a first try, but it came from one of the most aggressively celiac-proponent bakeries in Vancouver—a reasonably good city for being gluten-free.

The worst thing about reacting to food that ought to be fine is the inevitable questioning about what worrisome things could be additionally wrong. Pancreas, thyroid, liver, etc. Stuck feeling awful in the middle of the night, one can't help but contemplate these sort of things. I've completed a routine battery of bloodwork lately, however, and nothing like the above has shown up. This sort of reassurance works in most situations, but not so much when terribly sick at 2am.

Waiting to consult again with the gastroenterologist who diagnosed me 7 years ago, but those folks take a while to get an appointment with.

A bit of a whinge post while feeling ill, clearly! I imagine I'm not the first in the forum to do so.

Thanks again for the ideas & for reading, and good health to you all.

[beth01]

Maybe you had a food intolerance pop up.  Maybe a food and symptom diary is in order.  Hope you feel better.

[jddh]

Still no better; often worse. I finally got to see my GP who was rather brusque & inclined to start from the beginning. Testing for pancreas activity, parasites, h pylori, etc. She put me on Omeprazole--an alternative, cheaper version to Losec. Just took my first dose today. Lunch went by smoothly and I thought I found temporary symptom relief. Had a rather large dinner to make up for so many small insufficient feedings. 7 hours later I feel dreadful; standard glutening symptoms. However before this ordeal began, I would generally feel symptoms for 3 hours or less; then things would settle and I could sleep. Tonight is stretching on forever.

My symptoms aren't pain but intense nausea. Always been that way since I started visibly reacting to gluten in my mid twenties. Symptoms would start 3ish hours after eating, and as I say, last for 3 hours or less. I have long assumed that this was the window during which food would pass from my stomach to my duodenum and beyond. But 7-8 hours later, surely what I ate is now on its way to my colon. As I understand it, celiac disease doesn't tend to trigger/affect in that region.

I wonder if omeprazole could make things worse? Perhaps decreased stomach acid causes my digestive process to slow down, lengthening the autoimmune reaction In my small gut. I've been looking around these forums for reports of that drug containing gluten itself, but it sounds relatively unlikely.

Here in Canada, GPs are starved for appointment time and specialists are in high demand. Message from gastroenterologist is that they're trying to get me an appointment in the next NINE MONTHS. This is the guy who scoped and diagnosed me as celiac 7 years ago! Michael Myers’ take on Canadian health care was way too generous. Our medical system is stressed to the wire and private care is unaffordable and never insured.

Thanks for all your recommendations about food diaries. I've been keeping one regularly and so far nothing is clear. Sometimes it's meat products, sometimes it's raw vegetables. I just don't know. The only thing so far that's consistently ok is breakfast food--gluten-free toast, gluten-free granola. No protein there; can't live on that 3 times a day. I've always been skinny with a short stature, and now I'm starting to lose weight. I'm not inclined to eat very much of anything given that I don't know what will make me sick. My body was so greatful tonight to get a decent sized meal with protein and whatnot, and now it's rejecting it.

Has anyone had any success fast-tracking a GI doctor? My GP says she's going to go after him, but I don't know what that will produce.

Often I explore threads and try to give advice to others, taking some selfish solace that, at the time, my management of the disease is in an OK place. So I hope if you read this you will pat yourself on the back and congratulate yourself that your gut is healing and you will be able to sleep tonight. I hope to get back there soon.

Healing wishes to all of you.

[dilettantesteph]

You may want to consider a diet like this one: http://www.biomedcentral.com/1471-230X/13/40

 

There can be wait times around 3 months where I live in the US to see a GI.  Last time my son got in quickly only to find that the doctor knew very little about celiac disease.  He didn't think that it could cause reflux because that wasn't listed as a symptom on his celiac pamphlet.  It can be frustrating.

[GF Lover]

Hi jddh.  You asked : I wonder if omeprazole could make things worse? Perhaps decreased stomach acid causes my digestive process to slow down, lengthening the autoimmune reaction In my small gut. 

 

Years ago I was given this med also.  I was doubled over in pain every time I ate a meal.  I was also having acid come up my throat.  For these two symptoms I was prescribed it.  I took as directed and I stopped it within 10 days.  It made me feel nauseous through the entire day and my stomach would be tender to the touch.  It certainly made things worse for me.  It also never even touched the pain with a meal.

 

I know not everyone reacts this way and I'm sure the med has helped many but this is how it effected me.  These two issues slowly resolved years later with a gluten free diet.

 

Good luck,

 

Colleen

[cyclinglady]

Here are my ideas (and they may be way off)....

My husband went gluten free 13 years ago. I fed him purchased gluten-free bread and goodies and he did not have any issues. I was then diagnosed and I started eating gluten-free products. I thought I was getting glutened. Turns out it was Xanthan gum found in many certified gluten-free products. Anyone can develop intolerances at any time. I still can not consume Xanthan gum.

Have you had your gallbladder checked out? A HIDA scan? I never presented with classic gallbladder symptoms. No stones, just a non-functioning GB that would work on and off over the years. Finally, during the last four months prior to removal, I was getting sicker and sicker. There was no correlation with foods for my pain. It became infected and they had to find the infection. From CTs to ultrasound, every test came back normal except the HIDA.

[jddh]

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.

[jddh]

Got my blood tests back. Everything is within reg limits, including lipase. ALT & Gamma GT is cool. Ttg was nice & low in June. Everything to do with inflammation/WBC is elevated since previous tests in June, but nothing out of range. Tests in June show oddly high carotene, which is puzzling. I am not turning orange. Still waiting on vitamin A. H pylori & ova/parasites negative. Waiting on bacterial culture.

 

Specific question: anyone know if SIBO would be detected in stool culture or ova/parasite?

 

Digestive enzymes didn't do much. Trying omeprazole again. A pharmacist reminded me that a single day of dosage is hardly a fair way of evaluating its effectivity & effects. When I first had symptoms years ago, a barium x-ray showed a duodenal ulcer weeks before an endoscopy revealed celiac disease. As my symptoms are largely identical, it seems reasonable that another ulcer might be present. Taking a PPI back then relieved symptoms a bit, as I recall.

 

Also reflecting that I was a symptom-free celiac until a period of intense stress in my personal life. I know this was the case for many of you too. It's definitely been another relatively stressful time in my life, so there is perhaps a connection there. I get the impression that some folks can trigger reactions by stress alone. This is, after all, an autoimmune condition. It seems reasonable to think that the stressors on our system can exacerbate our heightened autoimmune sensitivity.

 

Food diary hasn't revealed anything telling; basically everything produces a reaction except for breakfast food. Slight lactose intolerance comes and goes. This puts more credibility towards ulceration or other organ-related issues. I don't know enough about blood test results to know how sufficiently the above covers pancreas/liver/gallbladder.

 

Ultrasound next month. Waiting for last culture test, then I'll try to loop back with doctor. Desperately trying to not lose weight; my body can't afford to. Going to try a bit of a gluten & lactose-free supplement drink at lunch to see if I can stomach that.

 

Good test results are a mixed blessing when you want to know what's wrong!

[dilettantesteph]

When your ulcer was detected, were you treated for H. pylori? http://www.webmd.com/digestive-disorders/h-pylori-helicobacter-pylori

 

That might help.

[jddh]

I believe I tested negative for h pylori way back when I had a first ulcer. I have just tested negative again this time.

[jddh]

All tests back; everything is eff'ing normal except weirdly high carotene. No parasites; ultrasound showed no abnormalities.

 

I got fast-tracked to an internal medicine clinic at the hospital, which turned out to be partially a training program for senior med students. A fourth-year student spent a lot of time with me and did an in-depth physical, but eventually concluded with her supervisor that I need an endoscopy.

 

Duh.

 

GI's office is still saying "months," though this supervisor promised to write them another letter. And, if no action, perhaps get me to a GI at the hospital.

 

Very frustrating. Mostly, I'm in a crisis over my weight. The supervising doctor took the opportunity with me in a gown to demonstrate to his student about my various physical signs of rapid weight loss. Not pleasant. Felt like a museum display.

 

On the bright side, I've been feeling less symptoms. Several days go by where I don't get sick. Occasional feelings of reflux, or rather a "globus" stuck in my throat. I've been on omeprazole for over a week, though I've also really been holding back on what I eat.

 

So it's time to take charge, take deep breaths and try eat like a weight-lifter. I know I can eat (gluten-free) toast, peanut butter, bananas, nectarines, plums, rice, broccoli, arugula, fish, hard boiled eggs, avocado, aged cheese, black beans. Maybe turkey breast. So there's a lot there; at the risk of dullness I'm going to pack that stuff in, slowly adding new ingredients and seeing if I tolerate them.

 

Supervising doc gave me metoclopramide, which I recall taking way back when before I was diagnosed. Though I've learned since then, it's been black-labelled for some long-term use triggering muscle control problems. Little uneasy about that.

 

I'm learning that for me, being anxious and worried is half the battle. Worried about eating something that'll get me sick; worried about my diagnosis; worried about waiting months for help. I know that being this keyed up is probably playing a role in losing weight. 

 

So what to do? Pack in the food and try to feel positive. 

 

Thanks for reading.

[Sbwife14]

I don't have a gallbladder and I have gluten intolerance but I also have severe GERD. You may want to try anti reflux precautions. No chocolate. Elevate headboard. Don't eat late at night. No sodas, spicy or acidic foods. Take reflux meds at night and not in the mornings since reflux tends to be worse at night. I didn't realize this until I started working for an ENT....it really makes a difference... Maybe it'll help ? I have not monitored my sodas lately and I'm suffering.....ugh. Hope you can figure it out...

[AaronM761138]

  I've also had reactions to xanthan gum- I accidentally ate a bit too much of it a week ago and it was unpleasant and painful.

 

  Perhaps you have gastritis and inflammation.  I have this and a lot of foods can bother me, not just gluten and dairy (which for me just cause bloating, pain, and constipation).   Right now I'm sticking to eating very little fiber: instant mashed potatoes, instant rice.. that sort of thing.  I'm also taking DGL licorice and zinc carnosine supplements and aloe, and those seem to help a lot.

 

  Omeprazole has some serious potential side effects and it'll only help with reflux if you actually have excessive stomach acid (many cases of reflux are not caused by excess acidity, some are even due to bile reflux).

 

  Coconut oil is very good for calories because your body doesn't really have to digest it at all, it's taken up directly into the bloodstream.

[w8in4dave]

My thought is, when they say something is Gluten Free it is not truly " Free" it can have trace amounts. So you may be cannot tolerate those trace amounts. Like some people can tolerate gluten-free Oatmeal and some cannot.  Everyone reacts to different stuff. You may have some other intolerance, you said your Lactose intolerance comes and goes. you may be able to eat some stuff with lactose and not other things with lactose. Like I can eat Butter and Cheese but I cannot down a glass of milk or a big bowl of ice cream. 

[jddh]

Here's a little update; I can't believe I started this thread in July. My life has changed so much since the weeks before first writing. Every day is now focused around trying to get a good sleep, deciding what to try eating, waiting & dreading getting sick a few hours after eating, trying to pass the time while feeling sick. Wash, rinse, repeat.

 

I've mostly given up trying to focus on diet. The presumably "safe" foods that I had reached by elimination aren't safe anymore. Most everything will make me sick, though it's highly unpredictable. I ate the same meal four times last week, and reactions ranged from no reaction to a strong reaction—sometimes 2 hours later, sometimes 5. Length of reaction and symptoms were extremely varied, though nausea remains my main symptom. I've kept a food diary since July, and I can't find any patterns. The evidence of the above experience with a particular meal seems like pretty good proof.

 

So, bright side, I don't think I've developed another food intolerance. I did a topical allergy test, and predictably, nothing came up. I was recommended sodium cromoglicate to test for preventing an allergic reaction, but that didn't do much good. A naturopath recommended a IgA/IgE blood test for food intolerance, but I looked into it and it sounds highly unreliable. I don't think it's worth pursuing.

 

Got a chest x ray to look for throat obstruction as I often experience a lump in throat while feeling ill, but it came in clear. Ttg and CRP continue to be nice and low...no indication of inflammation, which I understand would mark IBD, among others.

 

All doctors I've seen recommend a GI referral and 'scope next, but I continue to wait in a queue. First slated visit is second week of December. It's comical how long it's taken to make the next diagnostic move. I'm considering going to a private clinic, of which there's a few in my city. People don't talk about that much in Canada...our public system is supposed to be able to cope. Can't afford it, but I'd pay just about anything to get on with my life.

 

The doctor who has given me the most time to be heard feels strongly that it's a functional issue perhaps strongly related to stress. He doesn't suspect an organic cause (organ problems, malignancy, etc), nor does he suspect anything to come up on an endoscopy. I understand where he's coming from...every test I do comes up clean. It's a funny thing: I want to be shown that I'm basically healthy, of course, but at the same time I want SOMETHING to be indicated diagnostically, so I have SOMETHING to work on, a diet to follow, meds to take, to start feeling better.

 

So I'm trying to take the functional disorder/stress diagnosis to heart. It's fair to say that I've been extremely anxious about this since early July, and feeling worse has increased in sync with being upset and worried about my health. I'm the sort of person who gets REALLY worried...perhaps more than some others. So I've capitulated and agreed to try an SSRI/SNRI med for relieving anxiety during this horrible waiting period. This med has few side effects other than making one sleep better at night, increase appetite, and gain weight. So on paper, it might be just what I need. It's even been reported in some good studies to be helpful for folks with IBD and functional dyspepsia. 

 

So it's worth a shot. Worst case scenario, it ought to help me cope with waiting and worrying. Best case, maybe it's just what I need to stress my system less and let my tissues heal. Beyond that, I continue to take omeprazole, though at five weeks of treatment, a peptic ulcer is starting to look relatively unlikely. I don't think it's reasonable to suspect GERD if I'm reacting sometimes five hours after eating.

 

It could be so much worse...I'm able to hold my food down; my bowels aren't dehydrating me; I'm not in much pain (though I think I'd prefer pain to nausea). But quality of life has really plummeted. I'm ready for a break.

[jddh]

Well, I'm diagnosed. 3 months later almost to the day. Could have been much longer, and I'm grateful that it wasn't.

Refractory. Type 2. Clonal lymphocytes observed.

Damn.

I can't even FIND other threads about this type on this message board. Does anyone know of any, or individual users? I suppose we're statistically infrequent.

Damn.

[cyclinglady]

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?