'glutening' Symptoms With No Explanation

[LGC88]

Hello,

I've been reading this forum and searching the internet for an answer to my problem for weeks, and finally decided to post to see if any of you have any suggestions.

I was diagnosed with coeliac disease almost 6 years ago, and since going gluten-free (with a few minor slip-ups) I have felt better and now finally have energy etc.

My problem started one day in late October after having my normal gluten-free diet, and I seemed to have an accidental 'glutening' (my major symptom is diarrhoea) and prepared to feel a bit rubbish for a few days. However, the same thing happened the following day and as I am extremely careful with my food and preparation, I knew it wasn't my fault and assumed I'd caught some sort of stomach bug and switched to plain, bland stuff and just water to drink. After a week of still having diarrhoea I knew something was wrong, and oddly enough I was now only getting the symptoms in the evenings - I'd feel fine during the day but around 5 or 6pm when I'd usually have my evening meal, I'd feel very nauseous and couldn't being myself to eat, then I would have a lot (and I mean a lot) of diarrhoea, and continue to feel nauseous until around 12am, sometimes as long as 2am and then suddenly my stomach would rumble, but by then I'd be so exhausted from panicking (I am emetophobic) I'd just fall asleep.

This continued as I said for a week until I managed to see my GP who suggested it was some sort of an infection, took stool and blood samples and told me to go drink water. The samples all came back negative for viruses etc so he told me to be extra careful with my diet (pointless).

After 2 weeks (and now rather underweight) I asked to see a different GP who suggested I temporarily remove all dairy from my diet, which for a short time seemed to work. She told me to reintroduce it gradually as if I'd had some kind of inflammation then my dairy tolerance would come back with time. I have actually been dairy free since then (mid November) as if I have any now, I get extremely bloated and everything evacuates as quick as if I'd had gluten! I do now use soy milk etc in place of dairy, and that doesn't seem to cause any problems.

But still now, 10 weeks since that first day, I am still having reactions to almost anything I eat, as if it contains gluten or dairy and I'm running out of ideas. I am still underweight although my weight is reasonably stable, but I'm so tired constantly and I cannot concentrate at uni and my relationship with my boyfriend is suffering (in my opinion at least) because I fall asleep at every opportunity. I've just realised, I do actually feel similar to pre-diagnosis. Hmm.

I keep a food diary, and there's nothing that I have in every single meal so for me to be ill after every meal doesn't make a lot of sense, right?

I've asked my GP for a full food intolerance panel, he says no. I've asked to be referred to a dietician, he says no. But he has made me an appointment to have a colonoscopy (joy of joys) on Wednesday to check for inflammation etc but other than 'keep eating' he has no suggestions.

So, if anyone does have any suggestions of what might be causing this or things that I can try etc etc then please, please do tell me! I am completely out of ideas, and the NHS is driving me mad.

Thank you in advance (and sorry for writing diarrhoea so many times)

L

[kareng]

I would ask him to do the endoscopy while he's there and take 6-8 samples just to make sure the Celiac isn't an issue in some way.

[mushroom]

I presume you have rechecked the labels of all processed foods and other products you use for change of formulation? That can often get us.

[kwylee]

I'm so sorry you're feeling like this. I know how frustrating this can be. It's happened to me and wound up being a bit of soy in a supplement that I had been taking all along, yet finally caught up with me- a cumulative effect I suppose. I removed it and felt 100% better within a day or two.

Point is, it was something I didn't suspect. Have you reexamined everything with fresh eyes? Hope you can figure it out soon.

[Skylark]

I'd look at soy and corn. You say the soy milk is OK but you're drinking it and sick, right? Also are you eating processed grain foods? Even the gluten-free stuff has traces of gluten and maybe you've gone super-sensitive? I wonder if you might do better eating meat, nuts, fruit, and vegetables, maybe a little rice and potatoes.

I agree with Kareng that you should be biopsied. Refractory sprue is rare but it can happen.

[rosetapper23]

I also suspect the soy. Speaking of soy, I recently had diarrhea for an entire week and couldn't figure out why, since I'd prepared all of my own food from natural sources. However, when I started getting worse rather than better, I examined every single ingredient....and it turned out to be the chopped garlic. Usually, I would use only fresh garlic, but my garlic press had broken....so I'd purchased a small jar of Christopher Ranch chopped garlic. Well, lo and behold, it now contains soybean oil! I was furious (with both the food manufacturer and me for not reading the label, even though I used to purchase it, and it had been fine to eat before). They seem to add soybean oil to everything these days (e.g., tuna, mayo, etc.). If it's not the soy, you may be consuming something else that recently was reformulated, as suggested above.

Another possibility in your case, though, is that you're suffering from cross-reactivity, which occurs when the body begins to mistakenly identify other foods as gluten. Usually, it's other grains or dairy, and my understanding is that you would need to eliminate all suspected cross-reactive foods and reintroduce them after a minimum of three months in order to give your immune system time to calm down.

[need a remedy]

hello all...im new here.

i am having the same exact issues as LGC88.

i was sick for years and could never figure it out.

had a colonoscopy 10 years ago and another just a couple months ago.

doctors were prescribing me anti heartburn stuff that was not working.

every Doctor i saw always gave me fiber bars that obviously never worked.

finally 3 years ago the pain was soooo bad,i was laying naked on my bathroom floor.

i had to bring myself to the ER and they ran tests and released me after 8 hours there to say im healthy.

not until my girlfriend said she heard Mellisa hasselbeck say if your being diagnosed with IBS get checked for celiac.

i had to ask my Dr to test for celiac 8 months ago and low and behold there is the problem...positive for it.

now after another colonoscopy(atleast this time i was put under for the test!)still have a clean colon, thank god......but im still having boughts of sever

cramping,bloating, gas, pain,twisting feeling in my gut,gas,gas,gas, lethargic,bed ridden when this happens FOR DAYS ON END.

my life is teetering towards absolute ruin because i cant do anything.

i make myself my own food from scratch and food that seemed fine before will end up getting me sick.

i cut out soy and most artificial sweeteners....what am i missing??

the dr's have nothing they can do as my tests came back negative for other food allergens.

last step is an endoscopy i guess but i have to wait til i get my insurance back....i cant get down there to insurance office because im in bed most of the time.

at this point the tallest building may have the solution for me....getting the strength to get to the top is my only problem.

sorry for such a long post but im really over this horrible quality of life i have.

ive even considered cutting myself open to pull out the part i feel inside that gurgles and twists and hurts.

i cant believe professionals havent a clue what is going on when it comes to this celiac business.

id sacrifice myself to get to the bottom of this mystery.

i wouldnt expect anyone to read this but thanks if you made it all the way through.

have a great day everyone

[Skylark]

Aw, geez. That sounds awful. Have you considered something like GAPS? Open Original Shared Link It might help both you and LGC88.

Sometimes we just can't handle grains, starch, or sugary foods with celiac disease. It used to be that people were put on a diet called SCD (specific carbohydrate diet) for "sprue" which was all sorts of diarrheal disease - IBS, Crohn's, and celiac were all lumped together. It worked pretty well for a lot of people. Then doctors discovered the "cure" for celiac disease was gluten-free. Unfortunately it's not always a cure. Avoiding wheat, rye, and barley works great for many celiacs but not so well for others. GAPS is a modern, updated version of the old SCD designed for healing a very damaged gut.

[red island]

When I first went gluten free I bought brown rice thinking it would be better for me than white rice. Well that stirred up my IBS (extreme cramping and diarrhea and pain beyond belief). I had to switch back to white rice for a few months til my poor guts were able to tolerate the fibre again. And I had issues with soy although that seems to have passed. I felt like I needed a university degree just to figure out what to put in my mouth. Now that I am feeling better I look back and wonder how I survived those days - I really feel for you all who are suffering now. And I hope that things turn around for you real soon.

[mushroom]

Glad that you were able to recover brown rice and soy.

[LGC88]

Thank you for all your replies.

For those who suggested soy, I'm not sure it's the problem because the day this all started I didn't have any - I wrote down exactly what I ate and have checked the ingredients since and no soy. But I'm using soy now and the symptoms haven't worsened, in fact on the odd day I seem to be ok, breathe a sigh of relief only to have it all come rushing back the next day (quite literally!).

I

[dilettantesteph]

I can only speak of my experiences, you need to figure out how your reactions work. I keep a food diary and monitor reactions. You said that you don't eat anything at every meal which would make you sick. In my case it is something I ate at any time the day before which makes me sick. I feel sick all day and at every meal, but it is something I ate the day before. Then when it comes to improving, I usually feel somewhat better the next day after not eating the offending item the day before, but it will take more like 3 days to really notice an improvement.

In my son's case, he doesn't notice a reaction until 2 days later. These delays can make figuring out the issue very difficult. You need to find out how your body reacts.

It helps me to stick to a diet of meats, fruits, and veggies.

I hope you both feel better soon.