What Happens And How Do You Deal With Being Glutened?

[TashaLouise]

Hi everyone.

First of all, disclaimer. I am assuming that all other coeliacs have had very bad experiences and will excuse me for my outward talking. I am slightly autistic meaning that I don't always have restraints on the amount of detail that is appropriate. For this, I can only say read on if you are a true coeliac and are not overly squeamish to specific details

I am writing this after spending 7 1/2 hours in the bathroom throwing up, crying, screaming, clenching and a lot more which I will spare you the details

I had dinner at about 8 and by 8.15 I was in absolute agony. My stomach was cramping and spasming. I was crying and trying to be sick but couldn't. It's very rare that I throw up during this time. It is usually only the other end. However tonight was a fairly normal night. Albeit a very bad night. I usually end up in hospital for about 3-5 days because the reaction is so bad. My stomach cramps, I feel sick, I feel like someone is pulling the insides of my stomach inside and out and in every direction at the same time. Sitting in the bathroom for 7 hours screaming is the only way (non hospital) that I can get through it. If I'm in hospital, I am dosed up with a lot morphine and gas and air and that usually does the trick eventually. I have heard other people saying that they drink tea, watch TV and 'simply ride it out' and I straight away think 'you haven't got it that bad'. Is there anybody else that has it this bad? I cannot think straight. Usually my mum comes in to try and calm me and stop me hyperventilating. I also always have a hot water bottle. All day every day. I have quite bad erythema ab igne (sever burn marks) on the stomach thanks to the over use of the HWB. When the episode has 'finished' so to speak, it takes me half an hour to work up the courage to get up and move for fear i might not be able to stand up without screaming in pain. Normally, after about 2 hours, mum will call the out of hours surgery and I will usually end up being taken in to the hospital. However tonight leaving the house was not an option so I really did have to ride it out.

Basically, my question is what happens when you personally get glutened and how do you deal with? Don't spare the gory details (that's what disclaimers are for). Also roughly how old were you? I'm interested to know life stories of experiences if you feel like sharing. I am only 18 and to be honest, I am petrified that this is going to happen for the rest of my life. The doctors have been useless to say the least and when I finally get my results back from a dietician that I have had to self refer myself to which confirm that I am coeliac, all h**l is gonna break lose at the doctors surgery. anyone else had these issues? Looking forward to hearing from you,

Tash

[kareng]

I'm wondering - what are you doing to get "glutened"?  I have been a Celiac for quite a few years and have maybe only been "glutened" 1 time in the last year.

 

I ask because if your reactions are this  bad - I would think you would be extra extra extra careful about what goes near your mouth.

[TashaLouise]

I'm wondering - what are you doing to get "glutened"?  I have been a Celiac for quite a few years and have maybe only been "glutened" 1 time in the last year.

 

I ask because if your reactions are this  bad - I would think you would be extra extra extra careful about what goes near your mouth.

Hi, thanks for replying.

I have no idea what sets it off. Maybe my dad eats something that is gluteney and doesn't clean it. After all it is my mum that has to deal with it. I always have stomach ache. All day everyday. People don't believe that that is possible but I Promise you it is the truth. I don't actively eat things that are gluteney. I am extra extra extra careful but somehow something is still getting in.

[kareng]

Hi, thanks for replying.

I have no idea what sets it off. Maybe my dad eats something that is gluteney and doesn't clean it. After all it is my mum that has to deal with it. I always have stomach ache. All day everyday. People don't believe that that is possible but I Promise you it is the truth. I don't actively eat things that are gluteney. I am extra extra extra careful but somehow something is still getting in.

 

 

Have you had your Celiac blood work re-run?  A follow-up.  See if you are still getting gluten or if it is something else.  

[TashaLouise]

Have you had your Celiac blood work re-run?  A follow-up.  See if you are still getting gluten or if it is something else.  

 I am currently still waiting for an actual diagnosis. will get the results within the next month or so. 

[MycasMommy]

I get very very ill too.  I will start vomiting within the hour and will twist in agony for the next 5-10. I have no official diagnosis.  I cannot get one because I cannot keep the gluten inside of me in the first place so they cant test my blood for it.  The little bit that does get through makes for horrible diarrhea and a sleepless night of wondering if I will just die from the pain. Seems a bit extreme but it really hurts so so so much. I was still getting sick 4-5 times a month until my family and I just couldnt take it anymore. Me BEING sick, and them worrying I might die on them.  Now, I DO NOT eat out.  I could chance it, but I am not that brave. We redid the whole kitchen. Flat out gluten-free and new everything. There is ONE small cabinet for gluten things and it has its own cutting board, bowl, spoon, and dishrag.  They basically went gluten-free with me. I am so grateful for them.

 

ETA: I probably SHOULD have gone to the hospital a few times but I do not have the money for that. It would have ruined us...so there was a lot of labor type breathing and things like that. Its really so horrible. I am so sorry to hear you have this problem too.

[kareng]

 I am currently still waiting for an actual diagnosis. will get the results within the next month or so. 

 

 

Hard to be diagnosed with Celiac if you are eating gluten free.  The blood tests and endoscopy need you to be eating gluten to get positive results.

 

I hope the doctors figure out what is wrong with you soon.

[TashaLouise]

Hard to be diagnosed with Celiac if you are eating gluten free.  The blood tests and endoscopy need you to be eating gluten to get positive results.

 

I hope the doctors figure out what is wrong with you soon.

I had an endoscopy and it was negative. I tried introducing gluten 6 weeks prior to the procedure but I ended up in Hospital for 3 nights due to sever pain and actual passing out from the pain. I then tried again 3 weeks later but the same thing happened. It is simply too painful to introduce for a test that they should have done when I was still eating gluten but they didn't. (My doctors are so useless).

Thanks. I do too!

[ravenwoodglass]

Although I rarely get glutened now when I do it is bad. I have extensive abdominal adhesions and it feels like my intestines are being ripped apart. I will also end up with a GI bleed and hours of explosive D. Because of this and because it takes up to 3 weeks for all the other effects to go away I am very careful. 

Have you had any celiac testing at all? If you had positive blood tests then, as was already mentioned, have them rerun to see if your levels are coming down.

Do go over the Newbie thread at the top of the coping page to make sure that there is not some gluten sneaking in somewhere. I noticed you use the European spelling for celiac. In some areas there the Codex Wheat starch is considered safe. Do you regularly consume items with this ingredient? If so drop them for a bit as many of us do not tolerate it. It would also be a good idea to drop oats if you are consuming those. You can add gluten-free certified oats after you have healed a bit.

Hope you are feeling better soon.

[TashaLouise]

Although I rarely get glutened now when I do it is bad. I have extensive abdominal adhesions and it feels like my intestines are being ripped apart. I will also end up with a GI bleed and hours of explosive D. Because of this and because it takes up to 3 weeks for all the other effects to go away I am very careful. 

Have you had any celiac testing at all? If you had positive blood tests then, as was already mentioned, have them rerun to see if your levels are coming down.

Do go over the Newbie thread at the top of the coping page to make sure that there is not some gluten sneaking in somewhere. I noticed you use the European spelling for celiac. In some areas there the Codex Wheat starch is considered safe. Do you regularly consume items with this ingredient? If so drop them for a bit as many of us do not tolerate it. It would also be a good idea to drop oats if you are consuming those. You can add gluten-free certified oats after you have healed a bit.

Hope you are feeling better soon.

I have been blood tested a few times but it has all come back negative. However, the doctors have said that the blood test is not always conclusive. I had one that showed something was different but the doctors where so useless that they didn't follow it up at all, no matter how much I asked. Yeah, I am in England, UK. I am always careful when buying food stuffs and never buy anything that has wheat in. I've never heard if codex wheat starch but will keep an eye out. I also never eat oats. If i do, I buy the smallest pack of gluten free oats from the health food store as I will end up throwing them away. I pretty much never use/eat oats.

Thank you

[Charli61]

Hi everyone.

First of all, disclaimer. I am assuming that all other coeliacs have had very bad experiences and will excuse me for my outward talking. I am slightly autistic meaning that I don't always have restraints on the amount of detail that is appropriate. For this, I can only say read on if you are a true coeliac and are not overly squeamish to specific details

I am writing this after spending 7 1/2 hours in the bathroom throwing up, crying, screaming, clenching and a lot more which I will spare you the details

I had dinner at about 8 and by 8.15 I was in absolute agony. My stomach was cramping and spasming. I was crying and trying to be sick but couldn't. It's very rare that I throw up during this time. It is usually only the other end. However tonight was a fairly normal night. Albeit a very bad night. I usually end up in hospital for about 3-5 days because the reaction is so bad. My stomach cramps, I feel sick, I feel like someone is pulling the insides of my stomach inside and out and in every direction at the same time. Sitting in the bathroom for 7 hours screaming is the only way (non hospital) that I can get through it. If I'm in hospital, I am dosed up with a lot morphine and gas and air and that usually does the trick eventually. I have heard other people saying that they drink tea, watch TV and 'simply ride it out' and I straight away think 'you haven't got it that bad'. Is there anybody else that has it this bad? I cannot think straight. Usually my mum comes in to try and calm me and stop me hyperventilating. I also always have a hot water bottle. All day every day. I have quite bad erythema ab igne (sever burn marks) on the stomach thanks to the over use of the HWB. When the episode has 'finished' so to speak, it takes me half an hour to work up the courage to get up and move for fear i might not be able to stand up without screaming in pain. Normally, after about 2 hours, mum will call the out of hours surgery and I will usually end up being taken in to the hospital. However tonight leaving the house was not an option so I really did have to ride it out.

Basically, my question is what happens when you personally get glutened and how do you deal with? Don't spare the gory details (that's what disclaimers are for). Also roughly how old were you? I'm interested to know life stories of experiences if you feel like sharing. I am only 18 and to be honest, I am petrified that this is going to happen for the rest of my life. The doctors have been useless to say the least and when I finally get my results back from a dietician that I have had to self refer myself to which confirm that I am coeliac, all h**l is gonna break lose at the doctors surgery. anyone else had these issues? Looking forward to hearing from you,

Tash

Well Tash... I think we are all a bit different in our reactions.. I bloat up like a blinking balloon, so bad that my skin feels like it's going to tear apart ( I look nine months pregnant)... and my ankles and wrists/hands hurt so terribly!  I have a headache and just hurt and feel so lousy.  I don't get 'glutened' too often, only twice in the past several years.  There is nausea, which may or may not end up to be actual vomiting.  The bloating thing brings with it gas and either D or the other end of the spectrum.... It isn't always the same.  I am 54 years old now, and was diagnosed 7 years ago, after being really sick and skeletal for 7 years.

[obesiac]

One good thing you got going is that you are 18 and know you need to avoid gluten. The bad - you have violent reactions. Can you tell us what you had for dinner that you talk about ?

I am 53 and went undiagnosed for 40+ years . I did not have violent reactions but had dermatitis herpatiformis and other symptoms that were just annoying and not a cause for hospitalization. Such as, blurry vision, poor hearing, fatigue, achy joints, weight gain, brain fog, etc.

Strict gluten free since 2010 and Im getting better. Feeling so much better that I am getting a little careless. I had a large starbucks java chip frappacino last night and now I learn it has gluten in it. I had some nausea, diahrea, a little fatigued, a little unfocused. I came here to find out what others do when they get glutened.

[Shade]

The words I use to describe it is early labor pains. I Dealt with this prediagnisis, and haven't experianced it for years until this last week after being heavily glutened.  If I get accidently glutened by a small amount I don't fell this, so I would imagine you are ingesting a decent amount of gluten. Or at least ingesting consistantly.

[Patt]

If you are autistic it dosent surprise me at all that you have such violent reactions. That being said you need to start getting real anal about what happens in the kitchen.

I am anal enough I think I will be single for the rest of my life, lol

If the person next to you is eating bread, crumbs will fall. never share a cutting board. same with the dishrags (I am eternally grateful for my dishwasher) Did you drink herbal tea, condiments, I drank a bottle of wine last week and was speecheless when i noticed it said "contains sulfites and eggs" Since when does wine contain eggs????? the list is painfuly intensive and frankly depressing

You mentioned something about your dad not really caring...My mom does not either, I am 31 and refuse to eat in her house because she still thinks bread is gluten free. he might be cc'ing your food unaware of anything.

Also many ppl who have celiac also have other food intolerances susch as corn, dairy, soy etc. Autistic ppl do not do well with dairy (but im sure you know this) My doc put me on a food holiday once. This might be the way to go for you. He put me on this "safe liquid food" (his wife has multiple allergies so I trust his judgement) then I was reintroduced very slowly to different foods starting with bland white rice until I worked my way through every allergy prone foods. It also gives your body some time to heal and a much needed break from whatever your battling

Anyway, perhaps you already know all this. This is my rant for today.