Pinpointing your trigger for developing celiac disease, if there is one?

[skbird 0]

I haven't posted in many years because I've finally gotten to a point where I am feeling better and actually doing really well with my food intolerances. I have a blog and a Facebook group, and have been studying nutrition to become a dietitian so that I can help other people with food intolerances. I didn't have diagnosed "true" celiac disease but have an autoimmune reaction to gluten, so I've avoided it for 8 years. I have gotten sick from the smallest amount when something I've had has been cross-contaminated or been served something accidentally with gluten in it.

Now my gastroenterologist is testing me to see if I have eosinophilic esophagitis and he has asked me to eat all the things that irritate me the most. So I have been eating so-called gluten-free oats the last 2-3 weeks (which cause me gut pain and heartburn) and I've been drinking orange juice. SInce school just got out last week, I started eating gluten, too, as I figured I would be incapacitated by it and wanted to do well on my finals. I've been back on it for 6 days and other than bloating (also had from oats) and heartburn, I haven't had any of my typical glutening symptoms. How could my body overreact and make me so sick (for up to a month!) when I'd get a breadcrumb in my food, but eating out-and-out gluten left and right (croissants, Chinese food, a whole baguette, Grape Nuts, etc) not make me feel all that bad?

Not enjoying the bloated look, though. And one thing I'm reactive to is nightshades (potatoes/tomatoes/peppers/eggplant) did make me feel pretty horrible yesterday. I wasn't surprised by that one. This gluten thing though, it's weird. I don't have a whole 6 weeks to be on it before I have to get my test done - I'm doing the blood test at 4 weeks - but the endoscopy (only upper, no biopsy, just looking for inflammation in my esophagus) is 6 weeks after I started the challenge.

Thanks for any thoughts.

[1desperateladysaved 93]

I haven't posted in many years because I've finally gotten to a point where I am feeling better and actually doing really well with my food intolerances. I have a blog and a Facebook group, and have been studying nutrition to become a dietitian so that I can help other people with food intolerances. I didn't have diagnosed "true" celiac disease but have an autoimmune reaction to gluten, so I've avoided it for 8 years. I have gotten sick from the smallest amount when something I've had has been cross-contaminated or been served something accidentally with gluten in it.

Now my gastroenterologist is testing me to see if I have eosinophilic esophagitis and he has asked me to eat all the things that irritate me the most. So I have been eating so-called gluten-free oats the last 2-3 weeks (which cause me gut pain and heartburn) and I've been drinking orange juice. SInce school just got out last week, I started eating gluten, too, as I figured I would be incapacitated by it and wanted to do well on my finals. I've been back on it for 6 days and other than bloating (also had from oats) and heartburn, I haven't had any of my typical glutening symptoms. How could my body overreact and make me so sick (for up to a month!) when I'd get a breadcrumb in my food, but eating out-and-out gluten left and right (croissants, Chinese food, a whole baguette, Grape Nuts, etc) not make me feel all that bad?

Not enjoying the bloated look, though. And one thing I'm reactive to is nightshades (potatoes/tomatoes/peppers/eggplant) did make me feel pretty horrible yesterday. I wasn't surprised by that one. This gluten thing though, it's weird. I don't have a whole 6 weeks to be on it before I have to get my test done - I'm doing the blood test at 4 weeks - but the endoscopy (only upper, no biopsy, just looking for inflammation in my esophagus) is 6 weeks after I started the challenge.

Thanks for any thoughts.

I hope you have some fun and learn something from the experience. I guess you must sort of overwhelm your body by eating so much gluten, so it isn't as sensitive to small amounts.

[Lisa 462]

It's recommended that it would take six to eight weeks, or more of a full gluten diet to test positive. So it would not be unusual for you to consume gluten for several weeks for you to get a reaction.

After healing, it might take time to break it all down, to be symptomatic.

....just my thoughts.

[skbird 0]

Yeah, I get that - it's just so weird that not two months ago I had something that was cross-contaminated and was super sick from it, but now that I'm eating so much more, intentionally, I'm not anything like that. I don't feel awesome by any means, and have a migraine today that won't go away, but it just seems odd to me.

Oh well, the mysteries of gluten. I guess I'm glad I'm not super sick because I have a month ahead of me of this. Yuck.

Thanks!

Stephanie

It's recommended that it would take six to eight weeks, or more of a full gluten diet to test positive. So it would not be unusual for you to consume gluten for several weeks for you to get a reaction.

After healing, it might take time to break it all down, to be symptomatic.

....just my thoughts.

[tuxedocat 4]

It took me a long time on gluten to start noticing reactions.

I first started having frank celiac type of symptoms after coming off of Atkins. Thats when I had DH. BEFORE I'd been on Atkins, I just felt vaguely "bleh" all the time.

Then - after being back on gluten for a few years, after my negative test - it took me a few years to start feeling sick again.

[psawyer 697]

I haven't posted in many years...

Welcome back, Stephanie!

[skbird 0]

Thanks, Kevin!

And TuxedoCat - I first started having my symptoms when I was coming off Atkins, too - that low carb bread that was 75% wheat gluten always made me sick. Before then though I felt blah, too.

I timed my food challenge to coincide with my school ending - if I'd known it would take longer to kick in, I would have started sooner. Oh well. I guess that's just the way it goes!

Stephanie

[tuxedocat 4]

Thanks, Kevin!

And TuxedoCat - I first started having my symptoms when I was coming off Atkins, too - that low carb bread that was 75% wheat gluten always made me sick. Before then though I felt blah, too.

I timed my food challenge to coincide with my school ending - if I'd known it would take longer to kick in, I would have started sooner. Oh well. I guess that's just the way it goes!

Stephanie

I always felt awful when I cheated on Atkins, but chalked it up to the carbs. I just thought I was becoming diabetic like the rest of my dad's side of the family.

I never ate bread on Atkins, low carb or otherwise - the low carb stuff tasted so awful that I wasn't tempted. I was close to a paleo style low carber (average meal was a salad with meat on it) and I didn't understand why I would feel sick on some foods but not others. I had noticed for MANY years (since I was a teenager) that pancakes or waffles for breakfast are an outright day wrecker - I would have a splitting headache by the middle of the day and it would be with me ALL day. I would also wake up feeling hung over if I ate pasta for dinner. But I never made the connection to gluten, I always connected it to carbs.

When I came off of Atkins, I never really gained much weight back. I was sure too that carbs were okay for me by now. I was fully off of Atkins about six months after I'd moved back in with my mom (which is a diet killer for me, I tend to just eat by instinct on my own - which means I tended to use soy sauce, yes, but I almost never ate bread or pasta or cereal). It was about that point when I started being actually sick. I started having GI issues to the point of being late to work frequently and having to take frequent breaks at work (morning worst of all for some reason) and reflux. I was constantly sick with everything that came through town, too, and constantly down with some form of food poisoning or another (or so I thought).

My doctors never put two and two together at this time.

A year later, it had gotten to the point where I was having really bad bowel involvement and practically couldn't keep anything in my stomach. I had severe Graves Disease to the point of being borderline thyroid storm, and a severe all over blistering rash. The rash went away on gluten free, but the bowel problems didn't clear up until I was on anti thyroid meds for a little while, so I didn't really connect two and two.

The doctor in his wisdom put me on gluten free before testing me for celiac; my blood test came back negative. Nonetheless, I stayed on gluten free for some months but since I thought the problem was thyroid and not celiac, I fell off of being gluten free and still never really connected my symptoms to gluten.

It's only 1) having symptoms again but my thyroid levels being normal according to blood tests and 2) being told by various people that gluten free may help my thyroid, that's made me question again.

I had ups and downs. I'm sure that I was doing damage to my body during those times I thought I was okay.

I have no idea if I have celiac per se, but I'm not going to go back in gluten to find out unless I have to.

[mommida 161]

Well back to the sankebite theory. Snakes have weaker venom in fall after biting things all spring and summer long. The venom is most lethal in spring, when the snake wakes from hibernation.

So you are weakening your immune system by constant exposure.

Remember that eosinophils, once activated, stay active for 12 days. Eosinophils can be active in any part of the GI track.

[skbird 0]

TuxedoCat - your story sounds almost exactly like mine, except for the thyroid part. I remember passing out from eating donuts and stuff like that when I was a kid. I had terrible hypoglycemia. It wasn't until I went off gluten that I could eat sugar again and not feel awful. It's amazing that people (doctors) don't put this together. That's part of why I am on the path to be a dietitian.

And Mommida - the snakebite theory - I hadn't heard that one but it makes some sense. I've been thinking that because I haven't stopped eating gluten, in other words I keep eating it every day, that I haven't had a chance for a crash, which is when I'd feel even worse. But I have been feeling worse (slightly) every day, so maybe that is further proof. I will be interested to see if my results come up positive (blood) and won't be surprised if my esophagus tests positive for a higher than normal level of eosinophils. I have had a lot of problems the last few years feeling like my throat has turned into a solid pipe (PVC) or that swallowing is difficult. I also choke on water or whatever I'm drinking regularly - even my own saliva sometimes.

So we'll see what happens - I was just surprised by how different my reaction has been but the more I read about it, the more I realize I'm not alone on this one. Still going to be a long 30 days - I don't do well with headaches or nausea. :/

Thanks!

[mommida 161]

I hope your testing is soon! I do know that drinking Slurpees can ease some of the throat discomfort of EoE.

Feel better soon!

[skbird 0]

Thanks for the kind words! That sounds like a great summer tip, too.

Take care!

I hope your testing is soon! I do know that drinking Slurpees can ease some of the throat discomfort of EoE.

Feel better soon!

[GlutenFreeAustinite 2]

i'm on a gluten challenge too (for celiac, not EE). I had the same deal....I would eat a crumb of gluten and be in agony for days. It took me about a week on the diet to start feeling bad. I think it's because I overwhelmed my system with so much gluten, it went into shock and couldn't react to every piece of gluten passing through my system, whereas when I get glutened, my system has time to react to the crumb. That's my highly opinionated idea.

[UKGail 18]

I finished a 2 week gluten challenge just over a week ago. After suffering from a worsening of headaches, body aches, stomach aches and severe fatigue just from exposure to gluten being cooked or toasted around me, while I was gluten free and recovering, I was really nervous about about doing a challenge. The first week was ok, with just abdominal pain and achiness which would pass before the next dose of gluten, and my energy levels held up.

During the second week though, the body pain and fatigue gradually kicked back in. Each day I felt worse than the previous one. The brain fog started up again too. By day 14 (a Saturday, so no work) I felt so bad, I just sat on the sofa all day doing nothing, and on Sunday I had a major migraine, D, major stomach pain and nausea, swelling etc. I couldn't eat a thing and retreated to bed for the best part of 2 days. Then I had to do the bowel prep for the colonoscopy, so didn't eat again until late Tuesday.

Was back at work on Wednesday feeling much better, having fasted for 3 days, and then returning to the gluten free diet. The abdominal pain and headaches took about a week to subside. Skin itchiness and breakouts still haven't quite got there, but they are improving. Ditto bloating/swelling and what I think might be lymph pain. Fatigue and body aches are still a significant problem, so it might be a while longer before I fully bounce back.

So the symptoms of a gluten challenge can build up quite subtly, and equally take a while to get back under control again. It is not something to be undertaken lightly. I felt that I couldn't have swallowed another mouthful of gluteny food by the end of two weeks. And most doctors seem to say that a gluten challenge should normally be for up to 3 months. Torture!