Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Celiac Switching From gluten-free Back To Gluten..help!
0

46 posts in this topic

I was diagnosed with Celiacs in April of this year and immediately changed my diet to gluten free which relieved all my problems in just weeks. I am faced with a situation recently where I HAVE NO CHOICE but to switch back to a gluten diet for a period of time..a couple months. I do not want to say why in case this comes across the wrong eyes but point being I have to go back to an unregulated diet. I have accidentally consumed gluten about 2 times since my gluten-free diet.. I got sick for a day or two. My question is if I take the risk and eat gluten then continue to eat it will my body cope like it did before until I can once again resume my gluten-free diet? Or will the illness not stop? I'm in a real sticky situation here and have about a month until I have no choice but to eat gluten. Someone please help me

0

Share this post


Link to post
Share on other sites


Ads by Google:

I couldn't tell you, since I wouldn't go back to eating gluten on purpose. Even in prison, they must give you a medically safe diet ( not tasty, just safe).

Seriously, other people on here have had Celiac and been in the military. Some were allowed to continue but maybe not deploy to a " difficult" situation. If that's your situation, they probably know about your diagnosis or will soon if you used the insurance.

0

Share this post


Link to post
Share on other sites

I couldn't tell you, since I wouldn't go back to eating gluten on purpose. Even in prison, they must give you a medically safe diet ( not tasty, just safe).

Seriously, other people on here have had Celiac and been in the military. Some were allowed to continue but maybe not deploy to a " difficult" situation. If that's your situation, they probably know about your diagnosis or will soon if you used the insurance.

I appreciate your time but if you couldn't tell me I don't know why you replied. I am aware of situations in jail, military, etc. where they must provide you with special meals. Sometimes it just doesn't work that way and in my case...it doesn't. Thanks anyway.

Anyone else have some experience with this?

0

Share this post


Link to post
Share on other sites

I am sorry you are having to go through this. You will heal again after the couple months is over but it may take some time. It may unfortunately be an unpleasant couple of months for you. Liquid Pepto Bismal can be helpful for stomach pain. Immodium helps with the D.

You should keep in close contact with your doctor if your doing this because you now need an endo for diagnosis. There are times when if the reaction to the challenge is severe the doctor will stop the challenge and will diagnose firmly based on the reaction. If you haven't seen your doctor in a while and are self diagnosed, it might be a good idea to make an appointment so he gets to see you as you are now on gluten free diet and tell him what your doing.

0

Share this post


Link to post
Share on other sites

If you got sick for a day or two after accidentally consuming gluten, you should expect to be sick every single day of the two months. You will likely be back to square one when you resume the gluten-free diet, meaning your symptoms will continue for some time. It is difficult to predict how long you will have to be gluten-free again to get back to where you are today.

0

Share this post


Link to post
Share on other sites




I don't mean to be rude, I can't think of a single situation that would force me to eat gluten again. I can think of lots of situations where it might be difficult to remain gluten free, but none where I would just give up and plan on being sick for two months--especially if I knew in advance that that time was coming and I could make arrangements for gluten free food. Whatever you are going through I hope you will research your options better to figure out if eating gluten really is your only option. Even homeless shelters should be able to give you plain rice or potatoes or something if you explain, especially since you have a doctor diagnosis. I'm not sure what type of help you were looking for here, since you were so vague on the situation details. I hope you can figure out a solution other than just eating gluten and being sick. The long time health risks of going back to gluten are not worth it IMO.

0

Share this post


Link to post
Share on other sites

I don't mean to be rude, I can't think of a single situation that would force me to eat gluten again. I can think of lots of situations where it might be difficult to remain gluten free, but none where I would just give up and plan on being sick for two months--especially if I knew in advance that that time was coming and I could make arrangements for gluten free food. Whatever you are going through I hope you will research your options better to figure out if eating gluten really is your only option. Even homeless shelters should be able to give you plain rice or potatoes or something if you explain, especially since you have a doctor diagnosis. I'm not sure what type of help you were looking for here, since you were so vague on the situation details. I hope you can figure out a solution other than just eating gluten and being sick. The long time health risks of going back to gluten are not worth it IMO.

It's actually incredibly rude. I know of several people who want to serve in our military honorably who would be kicked out of boot if it was known they are celiac. They get friends to trade them meat for bread and spend months, if not years trying to cover up their sickness. Once they get through boot and get their assignments they can get a doctor to check them out, and get their disease diagnost as a new condition.

To the originator of this thread... don't know if this is you, but I can tell you they all made it through. I'm sure you'll survive and get straight on the flip side.

2

Share this post


Link to post
Share on other sites

It's actually incredibly rude. I know of several people who want to serve in our military honorably who would be kicked out of boot if it was known they are celiac. They get friends to trade them meat for bread and spend months, if not years trying to cover up their sickness. Once they get through boot and get their assignments they can get a doctor to check them out, and get their disease diagnost as a new condition.

To the originator of this thread... don't know if this is you, but I can tell you they all made it through. I'm sure you'll survive and get straight on the flip side.

Let me assure you as the daughter of a Marine I have great respect for what our military goes through. However, my opinion remains the same that it's not worth it to risk long term health for the short term. If the military does not accomodate celiac than that is awful. At the same time I don't see anything "honorable" about lying about a medical condition to get through basic. If you are sick while on the field you put your fellow solidiers at risk. Going gluten free again after a two month glutening is not like flipping a switch and then you can be healthy again right away, at least not for most people. With the possibility of other food intolerance, other autoimmune diseases and cancer developing why would anyone want to take that risk? There's also the possiblity of refractory celiac developing which doesn't respond to diet at all.

0

Share this post


Link to post
Share on other sites

It's actually incredibly rude. I know of several people who want to serve in our military honorably who would be kicked out of boot if it was known they are celiac. They get friends to trade them meat for bread and spend months, if not years trying to cover up their sickness. Once they get through boot and get their assignments they can get a doctor to check them out, and get their disease diagnost as a new condition.

To the originator of this thread... don't know if this is you, but I can tell you they all made it through. I'm sure you'll survive and get straight on the flip side.

This is still, however, not a situation in which the person is forced to eat gluten. It is a choice. Yes, the alternative would be to be discharged, but not getting what you want they way you want it doesn't mean you don't have a choice.

3

Share this post


Link to post
Share on other sites

Well,unfortunately I have direct experience, so I will share it with you regardless of what your situation is. When I went back on gluten after 5 years on whole foods, my symptoms were 10 times worse than they were before. I didn't know about gluten at the time. I had remained on the Atkins strict version of the diet for my weight. I spent the number of grams of carbs per day on ...chocolate. I was fine. Little did I know it was actually gluten, not carbohydrate making me ill. So when I got married, my husband ate pita bread, so I used my allowed number of carbs on-pita bread-every day. Within a week, my face swelled and my fingers and feet swelled. I could NOT think clearly, I was dizzy, nauseous, dazed confused and sad. The next week I got bad acne which turned into oozing sores that did not go away for years. (DH) I became irritable, moody, clumsy and started having really bad migraine headaches that seemed to last longer and longer until they almost never went away. I was so tired I had to sleep every moment I was not at work and I had a small son to take care of. It was impossible to figure what was making everything about my body not work. The next thing I noticed was incredible forgetfulness, I would drive right past work and not realize it. Then I developed heart palpitations and kidney spasms and my fingernails peeled and cuticles bled. I had stomach aches and nausea every day. It was a long time before I got diarrhea but that too developed. I was horrified by all of this, but the Dr. said I had clinical depression and referred me for therapy. It didn't work. I couldn't think or process well enough to have a conversation. I started falling in the shower for no reason. I bruised easily and cried if someone spoke to me. I slept all day every day and never felt alert. This all happened within 3 months. It lasted years before I figured out it was really gluten. My symptoms were mostly the dermatological and neurological symptoms of Celiac. I thought I would share this because it can be more than the stomach aches and diarrhea..and you should know what you are getting into just in case you too happen to get neurological symptoms. I forgot to mention the tooth discoloration that occurred during my exposure to gluten. As far as recovery, I am healing, but certainly the DH scars are here to stay, and the tooth discoloration, but now my muscles and joints are working properly and the fatigue and depression are mostly gone. I have been gluten free two months. I hope this helps.

6

Share this post


Link to post
Share on other sites

This is still, however, not a situation in which the person is forced to eat gluten. It is a choice. Yes, the alternative would be to be discharged, but not getting what you want they way you want it doesn't mean you don't have a choice.

Yes, I agree. When the OP wrote they have no choice, I was actually thinking perhaps this person is trying to get out of an abusive relationship and is planning on surviving off the kindness of others for a few months until they can get on their feet. That's the only situation I could think of where you might know in advanced you will be forced into it--being homeless and not knowing if you will get safe food (or enough food). The way the OP wrote that they didn't want the wrong eyes to see it made me think it was something more secretive and dangerous.

0

Share this post


Link to post
Share on other sites

I was diagnosed with Celiacs in April of this year and immediately changed my diet to gluten free which relieved all my problems in just weeks. I am faced with a situation recently where I HAVE NO CHOICE but to switch back to a gluten diet for a period of time..a couple months. I do not want to say why in case this comes across the wrong eyes but point being I have to go back to an unregulated diet. I have accidentally consumed gluten about 2 times since my gluten-free diet.. I got sick for a day or two. My question is if I take the risk and eat gluten then continue to eat it will my body cope like it did before until I can once again resume my gluten-free diet? Or will the illness not stop? I'm in a real sticky situation here and have about a month until I have no choice but to eat gluten. Someone please help me

I think to honestly answer this you have to have gone threw this situation. I have tried to go back on a non-gluten free diet and it has successfully not worked. I have tried more than three times to go back to eating Gluten again for certain reasons also, and Each Time I got even more sicker and even worse than the time before that and the symptoms last longer than you want or even expect. I have also been diagnosed with Celiac Disease Also and cannot tolerate any, and I Mean ANY Dairy or Gluten. All I can say is, if you have to go back to eating Gluten, Be wise about it and try not to over eat. It might help some but you WILL be SICK. The illness will not stop and only get worse and your body will try to cope, but it will not be successful. As I said, You WILL BE SICK. But, if you feel like you can tolerate being Sick as a Dog, then you have to. Be prepared to have a Lot of time to re-cooperate after you have to do this. Whatever the reason is, prepare your Mind, Heart, and Body to try and stay sane. This will mentally, and Physically drain you, not to mention could cause more physical damage to your body than you have now and you will be mad at yourself for doing this. Have someone that is a Great friend to help you threw this also. The only reason I know this is because I only speak from experience. Good luck and hope you make it threw whatever your having to go threw.

2

Share this post


Link to post
Share on other sites

Since I don't know what your situation is, I'll assume you don't have any choice whatsoever and will have no control over your diet.

When I eat gluten (and I'm not diagnosed Celiac btw) every joint in my body swells up to the point where I can barely walk. I get a DH rash all over my body and I'm so fuzzy headed I can't think clearly. My rage and anxiety act up and my poor family takes the brunt of my wrath. I have spent up to two weeks in bed sleeping 16 hours a day after a gluten attack.

If you are in a position where others are depending on you, ie children, co-workers, patients, fellow soldiers, I think you could be putting them at a huge risk. I can't think of anyway for you to make it easier on yourself.

I hope you're not in any kind of danger.

1

Share this post


Link to post
Share on other sites

I was diagnosed with Celiacs in April of this year and immediately changed my diet to gluten free which relieved all my problems in just weeks. I am faced with a situation recently where I HAVE NO CHOICE but to switch back to a gluten diet for a period of time..a couple months. I do not want to say why in case this comes across the wrong eyes but point being I have to go back to an unregulated diet. I have accidentally consumed gluten about 2 times since my gluten-free diet.. I got sick for a day or two. My question is if I take the risk and eat gluten then continue to eat it will my body cope like it did before until I can once again resume my gluten-free diet? Or will the illness not stop? I'm in a real sticky situation here and have about a month until I have no choice but to eat gluten. Someone please help me

A heating pad and herbal (mint or chamomile tea) can provide some relief. I'm so sorry for what you're going through and even more sorry that you can't share the circumstances. It would make it a lot easier to help you. I was paranoid when I first joined the forum that my GI would see my posts (as if he spends his free time on it). I do understand that some things need to be kept to yourself. I just hope that you're not in harm's way.

Keeping you in my prayers,

Loey

1

Share this post


Link to post
Share on other sites

It's actually incredibly rude. I know of several people who want to serve in our military honorably who would be kicked out of boot if it was known they are celiac. They get friends to trade them meat for bread and spend months, if not years trying to cover up their sickness. Once they get through boot and get their assignments they can get a doctor to check them out, and get their disease diagnost as a new condition.

To the originator of this thread... don't know if this is you, but I can tell you they all made it through. I'm sure you'll survive and get straight on the flip side.

I don't think the response was rude, it was honest and based in reality. It serves no purpose to cover up an illness just to try and make it through basic training. Sometimes a person cannot do what they want in life due to an illness or condition and there is no shame in that. I'm sure there are positions in the military where having Celiac would not compromise their job duties but lying and covering up so you can pass basic, and then having it diagnosed as a new condition is plain stupid, not to mention dishonest. Not a good way to start out a military career and there is no guarantee this won't keep you from getting a medical discharge anyway.

6

Share this post


Link to post
Share on other sites

I don't think the response was rude, it was honest and based in reality. It serves no purpose to cover up an illness just to try and make it through basic training. Sometimes a person cannot do what they want in life due to an illness or condition and there is no shame in that. I'm sure there are positions in the military where having Celiac would not compromise their job duties but lying and covering up so you can pass basic, and then having it diagnosed as a new condition is plain stupid, not to mention dishonest. Not a good way to start out a military career and there is no guarantee this won't keep you from getting a medical discharge anyway.

I agree, my Dad was in the military, and therefore I've been to the military doctor's and sometimes they can be a bit clueless....They see 100's of patients each and every day. And while some are actually sick, some are just trying to get out of PT, or get SOMETHING on their charts so when they leave the service they can draw better benefits. There is no honor in that at all!

As far as symptoms go, for me each time I get exposed the symptoms get worse, and then the next time it takes even less to trigger me... :( I can't imagine eating wheat for a day, much less two months...I'd be worthless that whole time stuck in the bathroom :P

I pray you don't have to do it, but if you do I pray you heal quickly afterwards...

0

Share this post


Link to post
Share on other sites

Well, since we are all guessing what the unmentionable situation is I vote for a space shuttle trip to Mars. Joint US/Russian mission with forced sharing of meals for cultural enhancement reasons. Months of eating gluten filled space goodies in a weightless environment. Sounds fun, not. :(

But back to the question. Your body may tell you the answer before then if you start eating gluten again right now. Why wait and be surprised by the answer? You can test it yourself right now and have a good idea how things are going to go before it happens. If that will help you prepare somehow I don't know. The thing is, we all have our individual bodies and your bodies reaction can be totally different from mine or anyone elses. At least you will have an answer that directly relates to your own situation, not someone elses.

4

Share this post


Link to post
Share on other sites

I was diagnosed with Celiacs in April of this year and immediately changed my diet to gluten free which relieved all my problems in just weeks. I am faced with a situation recently where I HAVE NO CHOICE but to switch back to a gluten diet for a period of time..a couple months. I do not want to say why in case this comes across the wrong eyes but point being I have to go back to an unregulated diet. I have accidentally consumed gluten about 2 times since my gluten-free diet.. I got sick for a day or two. My question is if I take the risk and eat gluten then continue to eat it will my body cope like it did before until I can once again resume my gluten-free diet? Or will the illness not stop? I'm in a real sticky situation here and have about a month until I have no choice but to eat gluten. Someone please help me

This is so sad. I agree that you should give it a go now so you can be prepared for your body's reaction. Everyone reacts differently, and my reactions now are quite different (more severe) than before I went gluten free. I've read that from other poster's as well, so you should expect that, too. If you know what your symptoms will be, you can prepare better. I get migraines from hell, so I'd have my Imitrex on hand - a lot of Imitrex! And I'd be exhausted and need a lot of naps, so I'd be prepared for that, too, by making sure I'd have a place to sleep during the day and not overload my schedule. You get the point. Good luck! I hope it goes okay.

0

Share this post


Link to post
Share on other sites

I just wanted to add, maybe it would help to talk to a church or a counseling center? At least you could get a different point of view on the situation and possibly some alternatives. Or it might help just to have someone to vent to in private while you are going through this situation.

0

Share this post


Link to post
Share on other sites

It's actually incredibly rude. I know of several people who want to serve in our military honorably who would be kicked out of boot if it was known they are celiac. They get friends to trade them meat for bread and spend months, if not years trying to cover up their sickness. Once they get through boot and get their assignments they can get a doctor to check them out, and get their disease diagnost as a new condition.

To the originator of this thread... don't know if this is you, but I can tell you they all made it through. I'm sure you'll survive and get straight on the flip side.

Thank you thank you thank you for your kind, encouraging words. I don't really know why people are trying to figure out my situation anyway when all I am asking is if anyone can give me advice about switching back to unrestricted diet. you have made me a little less nervous. thank you again

Let me assure you as the daughter of a Marine I have great respect for what our military goes through. However, my opinion remains the same that it's not worth it to risk long term health for the short term. If the military does not accomodate celiac than that is awful. At the same time I don't see anything "honorable" about lying about a medical condition to get through basic. If you are sick while on the field you put your fellow solidiers at risk. Going gluten free again after a two month glutening is not like flipping a switch and then you can be healthy again right away, at least not for most people. With the possibility of other food intolerance, other autoimmune diseases and cancer developing why would anyone want to take that risk? There's also the possiblity of refractory celiac developing which doesn't respond to diet at all.

Take it easy. I'm just asking for advice and keep getting criticized. If you all knew what's in my future maybe a few of you wouldn't be so critical of me.

Well,unfortunately I have direct experience, so I will share it with you regardless of what your situation is. When I went back on gluten after 5 years on whole foods, my symptoms were 10 times worse than they were before. I didn't know about gluten at the time. I had remained on the Atkins strict version of the diet for my weight. I spent the number of grams of carbs per day on ...chocolate. I was fine. Little did I know it was actually gluten, not carbohydrate making me ill. So when I got married, my husband ate pita bread, so I used my allowed number of carbs on-pita bread-every day. Within a week, my face swelled and my fingers and feet swelled. I could NOT think clearly, I was dizzy, nauseous, dazed confused and sad. The next week I got bad acne which turned into oozing sores that did not go away for years. (DH) I became irritable, moody, clumsy and started having really bad migraine headaches that seemed to last longer and longer until they almost never went away. I was so tired I had to sleep every moment I was not at work and I had a small son to take care of. It was impossible to figure what was making everything about my body not work. The next thing I noticed was incredible forgetfulness, I would drive right past work and not realize it. Then I developed heart palpitations and kidney spasms and my fingernails peeled and cuticles bled. I had stomach aches and nausea every day. It was a long time before I got diarrhea but that too developed. I was horrified by all of this, but the Dr. said I had clinical depression and referred me for therapy. It didn't work. I couldn't think or process well enough to have a conversation. I started falling in the shower for no reason. I bruised easily and cried if someone spoke to me. I slept all day every day and never felt alert. This all happened within 3 months. It lasted years before I figured out it was really gluten. My symptoms were mostly the dermatological and neurological symptoms of Celiac. I thought I would share this because it can be more than the stomach aches and diarrhea..and you should know what you are getting into just in case you too happen to get neurological symptoms. I forgot to mention the tooth discoloration that occurred during my exposure to gluten. As far as recovery, I am healing, but certainly the DH scars are here to stay, and the tooth discoloration, but now my muscles and joints are working properly and the fatigue and depression are mostly gone. I have been gluten free two months. I hope this helps.

I want to thank you so much for sharing this with me. Most of these posts have criticized me and finally someone speaking from experience. I'm so sorry you had to experience all of this. YOu have helped more than you know. Thank you again friend

I think to honestly answer this you have to have gone threw this situation. I have tried to go back on a non-gluten free diet and it has successfully not worked. I have tried more than three times to go back to eating Gluten again for certain reasons also, and Each Time I got even more sicker and even worse than the time before that and the symptoms last longer than you want or even expect. I have also been diagnosed with Celiac Disease Also and cannot tolerate any, and I Mean ANY Dairy or Gluten. All I can say is, if you have to go back to eating Gluten, Be wise about it and try not to over eat. It might help some but you WILL be SICK. The illness will not stop and only get worse and your body will try to cope, but it will not be successful. As I said, You WILL BE SICK. But, if you feel like you can tolerate being Sick as a Dog, then you have to. Be prepared to have a Lot of time to re-cooperate after you have to do this. Whatever the reason is, prepare your Mind, Heart, and Body to try and stay sane. This will mentally, and Physically drain you, not to mention could cause more physical damage to your body than you have now and you will be mad at yourself for doing this. Have someone that is a Great friend to help you threw this also. The only reason I know this is because I only speak from experience. Good luck and hope you make it threw whatever your having to go threw.

Thank you for such kind words and sharing from experience. People like you are really helping me and not making me feel bad about myself. You have helped me out a lot. THanks so much again

Since I don't know what your situation is, I'll assume you don't have any choice whatsoever and will have no control over your diet.

When I eat gluten (and I'm not diagnosed Celiac btw) every joint in my body swells up to the point where I can barely walk. I get a DH rash all over my body and I'm so fuzzy headed I can't think clearly. My rage and anxiety act up and my poor family takes the brunt of my wrath. I have spent up to two weeks in bed sleeping 16 hours a day after a gluten attack.

If you are in a position where others are depending on you, ie children, co-workers, patients, fellow soldiers, I think you could be putting them at a huge risk. I can't think of anyway for you to make it easier on yourself.

I hope you're not in any kind of danger.

thank you for sharing and the advice

Well, since we are all guessing what the unmentionable situation is I vote for a space shuttle trip to Mars. Joint US/Russian mission with forced sharing of meals for cultural enhancement reasons. Months of eating gluten filled space goodies in a weightless environment. Sounds fun, not. :(

But back to the question. Your body may tell you the answer before then if you start eating gluten again right now. Why wait and be surprised by the answer? You can test it yourself right now and have a good idea how things are going to go before it happens. If that will help you prepare somehow I don't know. The thing is, we all have our individual bodies and your bodies reaction can be totally different from mine or anyone elses. At least you will have an answer that directly relates to your own situation, not someone elses.

Good point, good advice. thank you

This is so sad. I agree that you should give it a go now so you can be prepared for your body's reaction. Everyone reacts differently, and my reactions now are quite different (more severe) than before I went gluten free. I've read that from other poster's as well, so you should expect that, too. If you know what your symptoms will be, you can prepare better. I get migraines from hell, so I'd have my Imitrex on hand - a lot of Imitrex! And I'd be exhausted and need a lot of naps, so I'd be prepared for that, too, by making sure I'd have a place to sleep during the day and not overload my schedule. You get the point. Good luck! I hope it goes okay.

thanks you for the helpful advice. it's appreciated

0

Share this post


Link to post
Share on other sites

Take it easy. I'm just asking for advice and keep getting criticized. If you all knew what's in my future maybe a few of you wouldn't be so critical of me.

I'm sorry if I came across as criticizing you, personally. That was not my intent, but you posted asking for advice and I'm entitled to my opinion. I really hope you are not going into the military, I hope it's something much more serious than that that would cause you to risk your health. Sometimes you just can't do what you want to do in life. I had to drop out of grad school and give up my dream career because of this disease. I have hope that I may be able to complete school sometime, but I will never be able to do what I had planned on doing for the rest of my life. That's life sometimes. Whatever your situation is I wish you well.

2

Share this post


Link to post
Share on other sites

I was diagnosed with Celiacs in April of this year and immediately changed my diet to gluten free which relieved all my problems in just weeks. I am faced with a situation recently where I HAVE NO CHOICE but to switch back to a gluten diet for a period of time..a couple months. I do not want to say why in case this comes across the wrong eyes but point being I have to go back to an unregulated diet. I have accidentally consumed gluten about 2 times since my gluten-free diet.. I got sick for a day or two. My question is if I take the risk and eat gluten then continue to eat it will my body cope like it did before until I can once again resume my gluten-free diet? Or will the illness not stop? I'm in a real sticky situation here and have about a month until I have no choice but to eat gluten. Someone please help me

I'm sorry if anyone here came across as criticizing you. We are all in this together and it break my heart that you are in a situation so dire that you have to do this. Just know that we care about you and are here for you. I'll keep you in my prayers and send you the strength you need to get through this.

Healing Hugs,

Loey

P.S. Please remember that you can vent to us if you are not feeling well and don't let anything stop you from doing that. Feel free to PM me.

2

Share this post


Link to post
Share on other sites

Oh my! I can't imagine what I would go through if I had to eat gluten again...or then again...I can but it's a hellish nightmare.

I don't intend to speculate or judge you as to the "WHY?"s of your decision to go back to a glutened diet. I'll just tell you a little about me and my experience, as it seems that's what you're looking for.

My wheelchair is in part a direct relation to Celiac Disease being undiagnosed for my whole life up till 2009...I started a GFD then and had gluten issues diagnosed in 2010. Gluten ataxia, GI problems, and emotional/mental health problems, EXTREME and debilitating pain, malabsorption issues...have come as a result of eating gluten and not knowing it was killing me (see my signature below).

I accidentally ingested gluten a few times after I went gluten free. I was still learning for a while, and CC sometimes happens. Anyways, each time I've been exposed again to gluten it's landed me in the hospital multiple times per incident. I'm not talking about eating a piece of bread either. I mean like gluten in a piece of lunchmeat or cc because the cheese was cut with the same knife used to slice sandwich bread. Those situations WILL send me to the ER. Hallucinations, difficulty breathing, heart palpitations, rhythmic muscle contractions (myoclonic jerks), major diarrhea that leads to dehydration for which I need IV's, fever, pain that leaves me bedridden for about 2-3 weeks, followed by neurological symptoms. My vision gets so bad that I cannot read because my eyes skip and I get nystagmus, I cannot drive, I cannot sit up in bed because I will literally fall out of bed because my balance gets that bad. I lose my coordination and cannot do simple things like pick up a cup in the kitchen without knocking it over or get my key in the front door to enter my house at night.

Since you're asking for honest answers, that's the honest truth in my case. GLUTEN CAN KILL ME. And if I had not gone gluten free when I did, I believe it would have only been a few months before I died. Again, I need not exaggerate here. It is what it is.

The long-term effects never fully go away for me. Once I've been glutened (even just one little CC on one day and not again!), it takes at least 4 months for me to recover, but I never get EVERYTHING back to the place I was before glutened last. I will lose something - the ability to read small print, the ability to drive at night, the ability to walk on uneven ground without crutches/wheelchair/walker, etc. I do not anticipate getting these things back.

I now have SSI Disability, because of all of the problems Celiac Disease has caused. Actually, I just got the letter this week. I work from home because I do not have the energy or pain tolerance to work anywhere else, and I work part-time. I'm glad that I can do that, though when I was younger I used to go to the university as a full-time student AND work part-time. Can't now.

----------------

Suggestions? Well, eat as little gluten as possible.

I hope you will have much better luck that I have. I know I'm a person who has VERY SEVERE reactions and I'm super-sensitive. Some people are sick, it seems, for a few days per cc incident (assuming they don't continue to eat it repeatedly, day after day) and can get back to "normal" or near-normal within 2-3 weeks. But I assume you already knew that. So I figured you needed to hear from someone in the opposite camp who never fully recovers from any amount of gluten.

Best wishes for you and prayers going your way. Sorry for your situation and the stress that must be involved. Keep us updated and I'm sure there will be people here to help you walk through it and give suggestions when you're reacting.

Oh...by the way....PEDIALYTE is a wonderful substance! Gluten free too. Walmart brand is cheaper (cheapest to buy in the liter bottles already made...funny...you'd think the powder would be cheaper!) and also gluten-free. When I'm having a lot of D and can't eat or drink much, I have to down the Pedialyte or my electrolytes will tank and I end up in the ER again. So....drink lots. No matter how much it costs to drink Pedialyte by the liter, it costs more to say Hello to the ER doctors.

4

Share this post


Link to post
Share on other sites

I was diagnosed with Celiacs in April of this year and immediately changed my diet to gluten free which relieved all my problems in just weeks. I am faced with a situation recently where I HAVE NO CHOICE but to switch back to a gluten diet for a period of time..a couple months. I do not want to say why in case this comes across the wrong eyes but point being I have to go back to an unregulated diet. I have accidentally consumed gluten about 2 times since my gluten-free diet.. I got sick for a day or two. My question is if I take the risk and eat gluten then continue to eat it will my body cope like it did before until I can once again resume my gluten-free diet? Or will the illness not stop? I'm in a real sticky situation here and have about a month until I have no choice but to eat gluten. Someone please help me

Hi Friend,

I just had a thought for you as I was reading another post. Doctor's tell patients all the time to go back to eating gluten at the rate of 3 or 4 slices of bread per day for 6 weeks prior to testing. If they can make it through that then so can you regardless of what you are having to go through. I think what matters most is that you are true to yourself. "To thine own self be true." In light of the fact that some people do this on their Dr.'s advice- And Dr.s are sworn to First Do No Harm....well if it is OK to tell a Celiac pt. to eat gluten for the challenge knowing it will likely be damaging them. Then I say you have a right to eat gluten for 2 months to get through whatever you need to get through. Just another way to think of it. But if there is any testing ya wanna get done...that would be a good time to do it...after the gluten challenge. Still, I hope that time goes really fast for you.

0

Share this post


Link to post
Share on other sites

Your post intrigued me, but putting that aside. I agree with the other person who wrote about the gluten challenge; it can be done. Judging by your post I think you will be just fine. It takes a strong person to even suggest such an idea and you seem very committed to this.

My only advice would be do plan for the brain fog. When I am affected by cc I experience Extreme attention problems and am very irritable and unable to think. Sometimes my attention is so poor that it is not safe for me to drive. :( I just want you to consider these things when developing you plan.

Best of luck! Let us know how you are doing if you can.

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,376
    • Total Posts
      920,581
  • Topics

  • Posts

    • Consider using our forum private message feature to protect privacy....just in case you all did not know 😉 !
    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
    • Oh, I would suggest providing gluten-free goodies (e.g. Candy) or even a frozen cupcake (kept in the teacher's freezer) in the event of a party.  My daughter's classmate is severely allergic to peanuts.  Her mom did that and Abby was never left out!  😊
    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,453
    • Most Online
      1,763

    Newest Member
    Chelsealarita
    Joined