Very Different Side Effects From Getting Glutened

[Harley9999]

Hello

I was Dx with Celiacs about 10 months ago. I try hard to stick to the gluten-free diet but seem to accidently get glutened all the time. If I happen to eat a few things that have hidden stuff in them troubles like you cant imagine happen and I was wondering if I am alone with these nasty symptoms. They include:

The usual D and gi gurgling and headaches.. but also

Muscle cramps (severe) major joint pain, mouth sores, low energy to where I cant even lift my arms up and I end up sleeping about 15 hours in a row. I never do this. I get my 8 hours and I'm all set.

Does anyone have any of these freak symptoms??

Thanks

Harley

[Skylark]

Hi. Glad to see you post.

It would be so much easier if it were only a few hours of D, wouldn't it? I get the canker sores in my mouth sometimes, anxiety, and a couple days of extreme lethargy. I can get a lingering nausea/stomachache too that's very unpleasant. It's like I lose a day or two of my life to fatigue and malaise if I get into gluten.

[Harley9999]

Hi. Glad to see you post.

It would be so much easier if it were only a few hours of D, wouldn't it? I get the canker sores in my mouth sometimes, anxiety, and a couple days of extreme lethargy. I can get a lingering nausea/stomachache too that's very unpleasant. It's like I lose a day or two of my life to fatigue and malaise if I get into gluten.

Yes thats exactly how it feels. My lethargy usually only lasts about 3 days but it seems like about 1 week before everything is back to normal. I'm worried cuz I seem to get glutened sooo often and each time my body takes a real hit. I wish I never heard the term celiacs!!! I hate this disease sooo much!!

[T.H.]

You know, there has just gotta be something about going gluten free and what it does to us, I swear!

I used to have mouth and joint pain, muscle cramps, low energy stuff all the time - that was my set of celiac symptoms. But I never had any gut issues at all. My son always got the mouth sores. Now that I've gone gluten free, I get the D and GI stuff on top of it and so does he. I suppose it's nice to know that we've eaten something damaging, but...wish it didn't feel so bad, yeah.

It really is...sucky, yes?

[Coinkey]

Mine seems to vary every time with the specifics but generally, stomach cramps, anxiety, depression, lethargy, bloatedness, joint pain, muscle weakness. I almost always feel like pooo and hate myself and just sit like a lump staring mindlessly at the telly. Once I figured it would be best to just end it all- i didn't act on it but that was scary. I gave in to a subway sandwich on Canada Day because I was away from home and only the food court and hotdog stands were open, so I figured I may as well KNOWINGLY gluten myself. Two days later and I'm just starting to feel like I can stand to be around people again.

[Harley9999]

You know, there has just gotta be something about going gluten free and what it does to us, I swear!

I used to have mouth and joint pain, muscle cramps, low energy stuff all the time - that was my set of celiac symptoms. But I never had any gut issues at all. My son always got the mouth sores. Now that I've gone gluten free, I get the D and GI stuff on top of it and so does he. I suppose it's nice to know that we've eaten something damaging, but...wish it didn't feel so bad, yeah.

It really is...sucky, yes?

I have found that since going gluten free that now when I do eat something (even a very small something) the side effects are horrible!! The worse thing is once you have been glutened... just knowing that the next few days will be pure torture. It is a very sucky thing indeed!

H~

[Harley9999]

Mine seems to vary every time with the specifics but generally, stomach cramps, anxiety, depression, lethargy, bloatedness, joint pain, muscle weakness. I almost always feel like pooo and hate myself and just sit like a lump staring mindlessly at the telly. Once I figured it would be best to just end it all- i didn't act on it but that was scary. I gave in to a subway sandwich on Canada Day because I was away from home and only the food court and hotdog stands were open, so I figured I may as well KNOWINGLY gluten myself. Two days later and I'm just starting to feel like I can stand to be around people again.

I can really relate to the "just giving in"... I keep saying to myself.. once you have been gluten-free for one month straight (not accidently getting glutened)... then I will indulge in a sub or pizza... but I will be darned if I can even go a full month before I end up eating something hidden deep inside a piece of innocent looking food! It is soooo frustrating and I get so fed up..... but there really isnt an escape from it. It's the cards we were dealt.

H~

[munchkinette]

Yes, I definitely have trouble with fatigue. Originally it seemed like it was just from anemia, but I realized it was gluten. After two weeks of my first elimination diet I ate gluten for one week. I slept for maybe 16 hours a day for that week! My university has a lot of stairs, and I usually take forever to go between classes after I get glutened. I also get really moody, depressed, and spacey. I often describe it to people as "PMS multiplied by 1000" but obviously there is a lot more to it than that. I don't sleep well, so the combination makes me a zombie. Plus I get really bad acne that doesn't heal well. It's not canker sores, but I get cracks around my mouth that don't heal.

A couple years ago I came home early from a vacation because I couldn't stop getting glutened. I had trouble climbing the one flight of stairs to my apartment for about three weeks after that. I didn't have joint pain, but I still just couldn't move.

[ravenwoodglass]

I can really relate to the "just giving in"... I keep saying to myself.. once you have been gluten-free for one month straight (not accidently getting glutened)... then I will indulge in a sub or pizza... but I will be darned if I can even go a full month before I end up eating something hidden deep inside a piece of innocent looking food! It is soooo frustrating and I get so fed up..... but there really isnt an escape from it. It's the cards we were dealt.

H~

Please, please don't do this to yourself. You can not just be gluten free most of the time, as I think you are seeing. The gluten free diet is just not a diet you can safely cheat on. There are a lot of good gluten free forms of bread, rolls and pizza crusts. Kinnickinnick and Grainless Baker make some good products. I am having a burger and fries tonight for dinner or perhaps a pizza. I got some hormel pepperoni yesterday in case I crave one today. Gluten free pantry makes a great French Bread mix that makes fantastic pizza dough that even gluten eaters I know like if you feel like making one from scratch. You can eat what your craving and miss, just not the wheat forms.

One other thing, many of us have an actual addiction to gluten. That means many go through withdrawl and most of us have a period of 'mourning' involved when we first go gluten free. The more accidents you have the longer the withdrawl will last. You can get through this. We are here to help all we can with the process.

[GFinDC]

Hey Harley,

There is a really wide range of symptoms that people get when glutened. That's probably why celiac is not diagnosed very fast. If you are in in your first month the diet, it is not surprising to make some mistakes. Or your 2nd or third for that matter!

I think it is simplest for people to start out on a very basic diet of whole foods, nothing processed. That way you don't have to be an expert on every ingredient on a label. Fresh whole foods are good, or frozen single ingredient foods also. Also avoiding the top 8 food allergens at first is not a bad idea.

After a while the diet gets to be routine, and easier. Then is a good time to try adding some processed gluten-free foods, one at a time. By then you will probably have enough experience to recognize symptoms of problem foods. But starting out with simple foods is a good way learn.

[jebby]

Hi,

My symptoms after getting glutened are similar to yours. I get bloating and abdominal pains pretty quickly, but the next day I experience joint pains in my fingers, left knee, and ankles, along with fatigue, a low grade fever, and then bruising and mouth sores. It takes about 3-4 days to feel pretty much back to normal and then about a week to feel totally back to normal after each episode.

I have been gluten free for almost 4 months and have had several unintentional ingestions in foods which I thought were safe, the most recent time was from a corn tortilla.

[Harley9999]

Please, please don't do this to yourself. You can not just be gluten free most of the time, as I think you are seeing. The gluten free diet is just not a diet you can safely cheat on. There are a lot of good gluten free forms of bread, rolls and pizza crusts. Kinnickinnick and Grainless Baker make some good products. I am having a burger and fries tonight for dinner or perhaps a pizza. I got some hormel pepperoni yesterday in case I crave one today. Gluten free pantry makes a great French Bread mix that makes fantastic pizza dough that even gluten eaters I know like if you feel like making one from scratch. You can eat what your craving and miss, just not the wheat forms.

One other thing, many of us have an actual addiction to gluten. That means many go through withdrawl and most of us have a period of 'mourning' involved when we first go gluten free. The more accidents you have the longer the withdrawl will last. You can get through this. We are here to help all we can with the process.

Thanks for the info. Deep down I know you are right. I am mourning the whole celiac thing big time. I am slowly.. and I mean slowly coming to the realization that I will never have a relationship with food as I once did. I now simply try to make it through the day without eating something taboo. My husband is super supportive although he wouldnt be caught dead eating any of "my special foods"...LOL... I dont blame him. It has gotten somewhat easier but I still struggle everyday. What does help is this place and knowing others are struggling just like me. May everyone have a peaceful gluten-free evening...

~H

[Harley9999]

Hey Harley,

There is a really wide range of symptoms that people get when glutened. That's probably why celiac is not diagnosed very fast. If you are in in your first month the diet, it is not surprising to make some mistakes. Or your 2nd or third for that matter!

I think it is simplest for people to start out on a very basic diet of whole foods, nothing processed. That way you don't have to be an expert on every ingredient on a label. Fresh whole foods are good, or frozen single ingredient foods also. Also avoiding the top 8 food allergens at first is not a bad idea.

After a while the diet gets to be routine, and easier. Then is a good time to try adding some processed gluten-free foods, one at a time. By then you will probably have enough experience to recognize symptoms of problem foods. But starting out with simple foods is a good way learn.

Thanks for the advice. I am actually 10 months into this madness. I was diagnosed in October of 09. I can stick to the basics and thats not the bad part... The bad part is even attempting to eat out in a restaurant. Thats where I always end up eating something I shouldnt (unintentionally). I am much more knowledgable than when I first started. It's been almost a week without getting glutened. I guess thats a start at least.

~H

[Harley9999]

Hi,

My symptoms after getting glutened are similar to yours. I get bloating and abdominal pains pretty quickly, but the next day I experience joint pains in my fingers, left knee, and ankles, along with fatigue, a low grade fever, and then bruising and mouth sores. It takes about 3-4 days to feel pretty much back to normal and then about a week to feel totally back to normal after each episode.

I have been gluten free for almost 4 months and have had several unintentional ingestions in foods which I thought were safe, the most recent time was from a corn tortilla.

Thanks for making me feel better. I thought maybe I was imagining it when my joints starting aching and I started having difficulty breathing... It just feels like an anchor is sitting on my lungs. Great job with 4 months gluten-free!! I am almost a week straight without being glutened and I am proud of that..LOL.... I also started keeping a food journal this past week.. That seems to help

~H

[bluebonnet]

i have major bloating and messed up bowels but the joint pain can be downright miserable. if i get them together i know i must have gotten cc. i try very hard daily to make sure what i'm eating is gluten free. so far there have only been a couple of times where i REALLY badly wanted something off limits but the craving passes ... especially if you focus on what that moment will do to you the following days. and i always keep something with me when traveling so i won't be "forced" to eat something i know will harm me. anyway, the symptoms do seem wicked worse after an accidental cc.

[Eric-C]

I personally do not think that enough Celiac's look into yeast after going gluten-free.

Yeast thrives in a unbalanced digestive system. What do most of us do to replace the gluten items, other good tasting foods we can eat, ie those with sugar and other great tasting but super high carb loads.

I had every single symptom known to man/woman.

Joint pain, muscle pain, all of it. You can read back through a lot of my posts with problem after problem. I addressed the yeast issue and it all went away. I'm about as normal as can be now. I don't post much anymore because of it.

I still have to be careful. Alcohol really does a number on me if I have a few drinks within a week. I was feeling great but had some Red Bridge w/ yeast in it, took having 3 of them in a week but put me back a few steps.

I control the yeast with Candex and a few other things....if I was motivated enough I could go super low carb for 5-6 months and be done with it for good but too tough to do.

I had one oddball symptom I posted about and amazingly others posted similar stories. When I have gluten while recovering I see tend to look at the clock, twice a day, exactly at 9:11. Will happen for weeks. No matter what I am doing, at 9:11 my eyes will find the time, phone, computer, wherever.

Good luck but I'd look at rebalancing the gut. It's so screwed up down there that parasites can flourish, not just yeast.

[Sprue is me]

Mine seems to vary every time with the specifics but generally, stomach cramps, anxiety, depression, lethargy, bloatedness, joint pain, muscle weakness. I almost always feel like pooo and hate myself and just sit like a lump staring mindlessly at the telly. Once I figured it would be best to just end it all- i didn't act on it but that was scary. I gave in to a subway sandwich on Canada Day because I was away from home and only the food court and hotdog stands were open, so I figured I may as well KNOWINGLY gluten myself. Two days later and I'm just starting to feel like I can stand to be around people again.

I can relate to this... though blood work and biopsy showed no signs of celiac (well duh, Dr, I've been off it for 4 months) it's the anxiety and depression and emotional sensitivity that I experience after a glutening that I fear the most. The sacrifices we 'gluten syndrome' people have to make are great. It is part of being an adult to take responsibility for our health, and if you are a parent with celiac kids, for theirs too. Unfortunately the pity party can only last so long, best to deal with the realities of this disease one day at a time.

I don't speak much but I am thankful for this forum and the wise and gentle members who are so helpful and from whom I have learned so much. I gave up gluten in February and haven't felt this healthy in 10 years.

[SueO]

This sounds similar to my reaction. I got glutened yesterday and feel like a truck hit me. I slept most of the day and have a lot of muscle weakness. I've been wondering if I can chalk it up to having eaten something but I don't think it can be anything else. I'm only about 2 months off of gluten.

[researchmomma]

Thanks for the info. Deep down I know you are right. I am mourning the whole celiac thing big time. I am slowly.. and I mean slowly coming to the realization that I will never have a relationship with food as I once did. I now simply try to make it through the day without eating something taboo. My husband is super supportive although he wouldnt be caught dead eating any of "my special foods"...LOL... I dont blame him. It has gotten somewhat easier but I still struggle everyday. What does help is this place and knowing others are struggling just like me. May everyone have a peaceful gluten-free evening...

~H

I would get a copy of The Gluten-Free Girl book. She has a fantastic relationship with food. I think you will really enjoy the book. It is wonderful and makes me so hungry for some really good quality food and she has the recipes so you actually can. She talks about her relationship with food prior to being dxd with celiac disease and what it is like now. It is amazing.