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


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45 replies to this topic

#16 polarbearscooby

 
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Posted 13 December 2010 - 08:58 AM

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...
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#17 GFinDC

 
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Posted 13 December 2010 - 06:03 PM

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.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#18 jenngolightly

 
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Posted 13 December 2010 - 06:19 PM

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.
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Jenn
dx celiac 9/2007: gluten-free 9/2007
corn intolerant: corn-free 5/2010
nut allergy: nut-free 8/2010

#19 GFinDC

 
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Posted 14 December 2010 - 05:18 AM

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.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#20 kostrof1

 
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Posted 14 December 2010 - 09:54 AM

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
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#21 GlutenFreeManna

 
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Posted 14 December 2010 - 11:02 AM

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.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#22 Loey

 
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Posted 15 December 2010 - 07:53 AM

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.



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#23 Gutsy Girl

 
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Posted 15 December 2010 - 07:34 PM

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.
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Chronic pain, Leg Sx's. LD, ADHD, Depression, GAD. Fibromyalgia, Asthma, Lactose Intol, 20+ Foot Fx, Migraines, Car accident 07 -> LBP, etc. Neuropathy now believed celiac disease-related. **2009 - VERY ill, unable to eat/sleep, Big D, Depression, Fainting, Vision Probs, Myoclonic jerk, Coord + Balance Probs, Heart Palp, Breathing Probs, Extreme Pain, etc. Hospitalized, self-diagnosed gluten issues. Slow recovery since 09, still many IBS + gluten ataxia probs.**
Lactose Free - Childhood (or use Lactaid), GFD 07-28-2009, Almond Free 05, Preservative Free 09, Soy Free 10, Millet Free 10, Potato Free 10, still reacting to many foods.

#24 eatmeat4good

 
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Posted 15 December 2010 - 08:12 PM

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.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
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#25 AZGirl

 
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Posted 15 December 2010 - 08:26 PM

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.
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#26 ravenwoodglass

 
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Posted 16 December 2010 - 03:50 AM

Most of these posts have criticized me and finally someone speaking from experience. I'm so sorry you had to experience all of this.


I don't think people are criticizing you. I think that was directed at the person who suggested hiding it to be able to get through boot camp.
It is human nature to be curious and in addition for those of us who have done a gluten challenge the thought of someone else having to go through this sends shudders down our spines.
I had to do a challenge for GI derived diagnosis after only being gluten free for a couple months on the orders of another doctor. The results of that challenge were dire to put it mildly. Not only did it impact my brain, making me hell to live with because I had almost no control over my temper and depression it also caused a severe return of D. With that challenge and with every glutening since then I suffer a GI bleed but my reaction was severe because I was so severely damaged before I was diagnosed. Hopefully your reaction will be milder. Do try your best to prepare yourself mentally for what you may experience back on gluten. Some of us have gone back on gluten for a bit and not suffered too badly but some of us have had really bad reactions. The idea to try gluten to see what it does before this 2 month period is a good one. That way you will know what to expect and plan accordingly. It will also give you the chance to perhaps talk to your doctor to see if you can get some meds that will help you make it through. I hope your experience is not to severe.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#27 Loey

 
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Posted 16 December 2010 - 08:22 AM

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.


I feel horrible for both of your situations. I was diagnosed in May of 2010 after being bedridden for 6 weeks. My GI thought I had gone undiagnosed for decades. In addition to the Celiac I now have been diagnosed with an ulcer and IBS. I moved to a new state the day after I was diagnosed and haven't been happy with my new GI. I just got a referral to a new one who came highly recommended by my husband's co-worker. I don't see him until January but if I get any tips or suggestions I will let you know. In the meantime you'll both remain in my prayers.

Sending support and healing hugs,
Loey
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#28 kostrof1

 
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Posted 16 December 2010 - 10:22 AM

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.

You're first sentence made my point...ADVICE...not opinions. Military is serious.. without it you would not have the FREEDOM to state your OPINION... so here is my opinion..celiacs is not going to keep me from my dream. Where there is a will there is a way..and I will find my way. This was just one step to help me get closer to my dream. Thanks for the well wishes. I hope you find the strength courage to continue on with your life...for life is short and we should all be able to do what we dream.

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.


I can't thank you enough for the encouragement, prayers and kind words. People like you are very helpful. I appreciate it.

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.


Wow! You poor thing! I'm glad to hear that you have thing ironed out mostly even tthough it must be complete hell to know what's going to happen if you get one little crumb of gluten. I ingested gluten approximately 3 times since my gluten-free diet. The first 2 times I got sick to my stomach and had to hit a bathroom pretty quick but was back on my feet that day. The last time downed me for about 2 days. Couldn't leave the bathroom for the first day. I'm so sorry to hear how awful your symptoms can be..but I thank you so much for sharing all this with me and for the advice. I will keep the pedialyte in mind! Once again I appreciate your support and feedback and hope that you continue to do well :) take care!

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.

Thank you thank you thank you!!

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.

Thanks for making me aware of the potential risks...good to know. Appreciated!!

I don't think people are criticizing you. I think that was directed at the person who suggested hiding it to be able to get through boot camp.
It is human nature to be curious and in addition for those of us who have done a gluten challenge the thought of someone else having to go through this sends shudders down our spines.
I had to do a challenge for GI derived diagnosis after only being gluten free for a couple months on the orders of another doctor. The results of that challenge were dire to put it mildly. Not only did it impact my brain, making me hell to live with because I had almost no control over my temper and depression it also caused a severe return of D. With that challenge and with every glutening since then I suffer a GI bleed but my reaction was severe because I was so severely damaged before I was diagnosed. Hopefully your reaction will be milder. Do try your best to prepare yourself mentally for what you may experience back on gluten. Some of us have gone back on gluten for a bit and not suffered too badly but some of us have had really bad reactions. The idea to try gluten to see what it does before this 2 month period is a good one. That way you will know what to expect and plan accordingly. It will also give you the chance to perhaps talk to your doctor to see if you can get some meds that will help you make it through. I hope your experience is not to severe.


I understand. I felt at times I was getting negative opinions and thoughts instead of actual advice and words from experience. I appreciate your advice and insight. Many of you have helped me tremendously and now I don't feel so alone. Thanks again.
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#29 Marz

 
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Posted 17 December 2010 - 06:04 AM

Hooo boy, that's quite a tricky situation, my sympathies :(

With my gluten challenge, which was done after a month gluten-free, I didn't notice that bad stomach problems. What was worse was the anxiety, panic attacks, itching (I starting getting DH after going gluten-free), brain fog, depression, irritability. You definitely should prepare for mood swings, and brace yourself for fatigue and maybe depression if you're inclined that way.

You might get lucky and "just" get the stomach problems?

** Not doctor's advice, and only said because this is an extreme situation, please don't flame me :) DO NOT TRY THIS if you can eat gluten-free, because you'd be incredibly stupid to do so unless really necessary**
I'm going to make a way out suggestion here - but I know that your immune system can down regulate itself. The theory is that the immune system is damped while eating gluten, and then recovers after going gluten-free, and then activates greatly in the face of gluten. Called the masking effect if I remember correctly. Maybe the opposite holds true - consistently eating gluten might revert you to pre-gluten-free symptoms, instead of gluten-free-oh-crap-I-just-ate-some-gluten! symptoms?

So I'd suggest going one of 2 extremes - either eating some amount of gluten morning, noon and night, and hopefully your immune system down-regulates in the face of constant activation. The small amount will cause damage yes, but hopefully your immune system will eventually realise it's going crazy?

Alternatively try to stay gluten-free even in your circumstance. You can always choose what to eat based on what you're being offered or what you can get. Take extra veges and skip the toast. I'd say this would be the best way, even if you're starving yourself a bit. Say you're on Atkins if you need to lie about your status. Or if you can't choose, take your meal and swap your bread for someone else's meat as suggested by someone else. Or just don't eat the bread :)

I think the "trying to be gluten-free and cheating once every few days" attempt will be a very bad experience, I think you either need to be completely gluten-free, or eat as if you're a normal person. You'll still be sick, but at least it won't be a yo-yo for your immune system.
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Feb 2010 - Start of continuous GIT problems and panic attacks
July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms
July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem
*************************************************************
Gluten intolerant

#30 WheatChef

 
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Posted 17 December 2010 - 10:07 AM

Aside from w/e reasons you have for doing something most of us would consider impossible as a fellow sufferer I'll recommend some things.

The initial phases of your body getting used to this will be absolutely terrible, marked by increased inflammation, all sorts of digestive issues and possible neurological symptoms as well. What you're going to want to do is to try and minimize all of these little side effects of the disease that you can. Focus on reducing inflammation as much as is possible. Things like aloe vera, fish meat or even just cod liver oil, olive oil/olives will help reduce systemic inflammation decreasing the amount of damage done overall. Additionally frequent exercise (not cardio) will help a bunch with that inflammation as well even though you probably won't have the energy to have heavy workout sessions at least try and get some in.

As far as the digestive issues go, the intake of gluten again will be causing your intestinal walls to start leaking like a sieve, if you're not already on them start taking probiotics en masse along with frequent consumption of fermented foods. This will hopefully somewhat decrease the negative effects on your internal microbes that is almost a constant with all celiacs and will somewhat diminish the amount of permeability increase you'll experience on your intestinal walls.

Since you'll be running the risk of several nutrient deficits you'll also want to look into a number of vitamin supplements. A simple trip over to the pre-diagnosis forum will show you some of the more common deficiencies that people experience on gluten. Some notable ones to watch out for are Vit-B (most of them), Vit-D, Iron and Protein.

Best of luck catching the russian spies or w/e it is you're doing.
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Receiving a qualified diagnosis of Irritable Bowel Syndrome is as useful as a Psychiatrist giving you a diagnosis of "Doesn't Think Right".




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