Recovery From Being Glutened

[englishrose]

Hi all,

So I've checked out this forum a few times since I was officially diagnosed with c(o)eliac in September of this year, but I've never posted anything before. I'm a bit nervous of getting shouted at, if I'm doing anything wrong/posting in the wrong place etc. please just let me know. My life story follows, feel free to skip over it (quite dull). I'm 19 years old and really pretty lucky in the grand scheme of things - I wasn't misdiagnosed for years, I never suffered horribly. I've had iron-deficiency anaemia, like, forever, but I'm also vegetarian and female, so that kinda figured anyway. I've also had GI symptoms for a little while (alternating constipation and diarrhoea, bloating, I'm sure I don't need to spell out the details to you guys) but I chalked them up to me having a crappy but basically disease-free body. I never went to see a doctor because I was afraid of being diagnosed with IBS, which at the time I thought was like being given a life sentence with no real treatments available.

Anyway, two things kind of happened at once. First, I was turned away from donating blood for the second year running in March, even though I'd been taking iron supplements for weeks in preparation, with a haemoglobin of 9 or 10, I don't remember exactly. Anyway, I'm a medical student and I'd just finished anaemias a few months before, and knew that the average haemoglobin value was 15, less than 13.5 usually being considered Not Great. Figured that was a little hinky given the supplements. Second, we were studying coeliac disease in school and one day I had a moment of clarity. Like, oh, maybe that's it. Went to the GP, blood tests taken, FINALLY got the results back and they were positive. Was booked in for a biopsy, went away to Ghana (long story), felt absolutely terrible for five weeks and cried several times a day, came home, had biopsy, went gluten free, felt better. Phew.

In September I moved in with three friends, all of whom are also medical students. I educated them a bit about what having coeliac meant - you know, all the little details like cross-contamination and why I needed my own toaster. I had three fabulous months, the odd panic attack (not that unusual for me, I'm pretty highly strung), a fainting spell or two (the kind of thing that gets you thoroughly laughed at, especially when it happens in the dissection room). I think I might have been slightly glutened once, but I only had minor symptoms and I was over it within two weeks max.

THIS IS THE QUESTION PART: Precisely 15 days ago I went to my best friend's sister's wedding, which she (bf's sister) catered. Yeah, the whole thing. She's absolutely mental. Anyway, their gran has coeliac too, so they told me they could make me gluten-free food and it would all be fine. I was apprehensive but agreed. Big mistake, obviously. I ate like a tablespoon of Daphenoise potatoes, which in retrospect OBVIOUSLY have to be made with flour. The next day, my gut felt fine (surprisingly) but I cried like the world was ending all day. It felt so horrible, this feeling of impending doom, everything felt wrong but I couldn't figure out why. The next day things were a little better, but my gut hasn't been right since. I also tried reintroducing lactose about a week ago, and I thought that might have been what caused the GI problems so I went back to soy, but things still aren't right. Bloating - so much bloating, stomach pain as well, and it really distresses me for some reason. I know there are way worse symptoms you could have but I've just been so upset about all this. Maybe it's because I had a taste of what it was like to feel better and now it's gone again?

Anyway, when you guys get glutened, does it take that long to go away? Could I still be doing something wrong now? I'm at home for Christmas and my mum is so so careful, we check everything and she doesn't even eat gluten herself when I'm here (she's not even coeliac, she just doesn't want to risk cc).

Wow. I could definitely have put that more succinctly. I'm so, so, sorry x

[IrishHeart]

This is rather ironic since I made gratin dauphinoise last night for dinner ( not kidding!!) and unless I am missing something, there is NO flour in that, hon. Potato, butter, cream, cheese, S and P, nutmeg and garlic rubbed in the gratin dish.

Not sure if that was it that may have "gotten" you, but the point is:

You do not feel well (sorry ) and is it possible it is the dairy, not gluten???

Many celiacs have a temporary secondary lactose intolerance and that may be causing the bloating and distress.

You might try omitting it for a few weeks and see how you feel?

If it was a CC issue from gluten somewhere, it can take a few days to a few weeks to pass. I had a 12 day fun- ride recently after a CC "incident".

Hope you feel better soon!

And, yes! Welcome to the forum!

[lucky28]

I am pretty new to this all too but I def. got glutened christmas eve, my stomach is just starting to get better now. Today is the first day that I had a normal bm and not had so much stomach pain and bloating. I think the time it takes to heal from a glutening is different for all of us. I also started out doing really well, then a few months into it my stomach was a mess again (I finally figured out that I was being cc from the pets!) it was very disheartening though. I completely feel your pain. Just hang in there, be careful with your diet and it will get better!

[Marilyn R]

Hi EnglishRose, and welcome to the forum!

Many of us have had other food intolerances shortly after going gluten-free. It's an autoimmune disease, and your system is really on the hunt since you've eliminated the gluten protein. Dairy, soy and corn are common culprits, because the protein is similar in structure to the gluten protein. Nightshade vegetables have been a problem for some. (I'm sure that's not good news since you are vegatarian.) Luckily, those foods can usually be reintroduced to your diet after a period of time.

It usually takes me about 3-5 days to recover from being glutened, depending on severity, but I'm pretty careful about what I eat.

Good luck to you, Happy New Year!

[rosetapper23]

I suspect that you ARE sensitive to one or more other things in your diet besides gluten. For many of us, soy is a BIG problem--bloating, pain, etc. Since you're a vegetarian, I assume that you get a lot of your protein from soy and dairy. If it turns out that you're sensitive to both dairy and soy, you may be facing a big decision regarding your diet. What can happen to people with celiac is that they can begin to suffer from cross-reactivity (Dr. Vikki Petersen has information on this at her website), which occurs when our autoimmune systems go kind of haywire and begin identifying other foods as though they contain gluten. Sometimes we begin to experience cross-reactions to other grains, such as rice. It is suggested that the suspected foods be removed from the diet for a minimum of three months when you can then reintroduce them one by one. Sometimes our bodies have calmed down by then and stop reacting to the foods; however, in some cases, the reaction continues.

Since you're a medical student, I hope you'll read about all types of diets so that you can ensure that you're properly nourished. I'm not going to chastise you for being a vegetarian, because many people do extremely well on such a diet. Others, however, do NOT do well....and I'm speaking about people with malabsorption problems. The best book on diet I've ever read in my life (and one that reads like a medical textbook) is "Primal Body, Primal Mind." You may be unhappy with some of the things that you'll read in it, but the science behind it is indisputable. I wish I'd read something like it when I was your age--I would have been spared so many health problems. This book especially goes into how our neurological health is affected by what is going on in our gut. Since the majority of our serotonin is manufactured in the gut, we can be very much affected by our diets. The author works in the field of neurology, and she explains in very detailed wording how diet affects us neurologically--from depression to ADHD to migraines, etc.

By the way, medical schools may not have caught up yet on the latest research on celiac. It is now considered very much a neurological disease and not just a disease of the gut. Our frontal lobes can be affected, causing learning problems and depression, and plaques can form throughout our brains. Please do a keyword search on celiac and neurology, and I'm sure you'll get a lot of hits.

Welcome to the Forum! And don't worry--your thoughts and words are respected here. I hope you start feeling better soon...

[annegirl]

I've had symptoms last 3 weeks after a glutening, they can definitely last a while.

I've found that what works for my symptoms (inflamed digestive system, hurting stomach, bloating etc) is aloe vera and probiotics. I take them every morning before anything else and you can just feel it sooth. Peppermint tea is also very soothing while you recover.

You might want to keep a food diary and see if there's anything else that could possibly be bothering you. If you were totally fine and then only had discomfort after eating what someone else made.....then I'd say you probably got cc'd somewhere along the way. You can make yourself crazy trying to nail down what it was, or you can just focus on trying to sooth and rebuild.

I really hope you start feeling better! I know how much of a bummer this can be. Hang in there!

[englishrose]

Wow, thank you all so much for your responses! Some very interesting points and ideas, thank you thank you thank you IrishHeart, I feel so dumb right now, clearly I know nothing whatsoever about cooking. I just assumed that any white sauce had to be made with flour. The good news is that I had my repeat blood tests done two days after the wedding, so with a bit of luck when I see my gastroenterologist on Wednesday he should be able to confirm whether I was actually glutened or not.

Everyone's comments about extra intolerances are very interesting. Since my diagnosis I've been on soy milk but eating normal yogurt and occasional hard cheese (both of which I think have fairly low lactose), which I did find okay. I seemed to get some symptoms from trying to reintroduce regular milk, but it could have been that they were from glutening... It's so hard to keep track! Annegirl, your comment about keeping a food diary is a very good idea. It's too hard to try to figure everything out in retrospect!

lucky28, I really hope you feel better soon *hugs* It's all so frustrating, isn't it?

rosetapper23, thank you so much for your reply. I never considered the possibility of a soy intolerance or problems with other grains. I am definitely going to mention it to my gastro on Wednesday. I don't suppose you know whether there are any specific tests that can be done to confirm/rule out additional sensitivities? Or is it just a case of trial and error to find which diet makes you feel best? I'm so fascinated by the crossover between coeliac and neurology, but I also figured that coeliacs with neurological problems also had a B12 deficiency. The geek in me is really looking forward to finding out more about this!

Thanks again so much to all of you. I didn't realise what a big difference it would make to talk to other people in the same situation. Happy new year, everyone

[rustycat]

englishrose,

Your gluten reaction sounds familiar. I get strong emotional responses to gluten - extreme anxiety and depression are my two biggies. Now that I've managed to find my food sensitivities (gluten plus many more), I feel so much better. I've been totally gluten free for 16 months now and it's been so worth all the difficulties of the adjustment period.

Best wishes with finding your food triggers.

[Chad Sines]

dairy hits me harder and faster than gluten. so does soy.

[pricklypear1971]

Not just b's but iron and d can contribute to neuro. My b's test fine, I'm low on iron and d and supplaments help tremendously.

[bumblebee-carnival]

It took me about 10ish days to recover after getting glutened at Thanksgiving. I am also lactose intolerant, but what is weird about that is I thought hard cheeses were okay. So I was having 2-3 slices of hard cheddar every day. All of a sudden I noticed I was having a ton of weird anxiety issues. To the point that I couldn't sleep at night because I was dwelling on little things I had done during the day thinking, "OMG Why did I say that?? That was so stupid. I bet they hate me now. Why am I always screwing things up??" and on and on and on like that. So very much not like me. The only thing I had done differently was add in a little cheese! Once I cut out the cheese, the anxiety left again. It was very eye opening for me.

[rosetapper23]

Regarding finding out about tests for cross-reaction sensitivity, I know that Dr. Vikki Petersen on her website (you'll have to do a keyword search on her name)can be contacted about them. Her office is in, I think, Sunnyvale, California, but she may be willing to share the names of the tests she gives her own patients.