Complete Recovery?

[Anthony22]

Hi everyone,

Not to be too negative, but it's getting a bit depressing for me to keep reading about people who have been gluten-free for so many month and years and are still having symptoms and all sorts of other problems. Is there anyone out there who can say that they've had complete cessation of all their symptoms after going on a gluten-free diet? I keep reading the "official" line that 99% of people with Celiac are able to live normal, healthy, symptom free lives after going gluten-free for a while. This certainly doesn't seem to be the case around here. After 2 1/2 months, I'm suffering worse than I was before, and I eat nothing processed, cook everything from scrarch, and have checked every last little thing possible from pet food to shampoo to old pots and pans etc. etc. etc. etc. etc. etc. etc. etc. It would be awfully nice to hear some uplifting stories and to know there is light at the end of the tunnel.

Anthony

[raisin]

I wouldn't say I've had a complete recovery, but I have not even been the diet a full year, and I hear the more severe cases can take 2 years. I did go from being unable to leave my home, to just having short spells of sickness most days that do not prevent me from going out and doing whatever I want whenever I want. So in less than 1 year, I went from incapacitated to nearly normal.

The start is always the hardest, because once you remove gluten from your diet, you seem to instantly become more sensitive. Some people think its just your body detoxing, but most believe it's a mix. Another reason healing may feel slow is the three stages of diet most people g through : 1. no obvious foods like bread. 2. No foods/products containing gluten directly. 3. No foods/products that contain indirect gluten (CC) as per your body's tolerance level. Many people also have to make a gluten-free household, and stop eating out. With each realization, people make bigger jumps to health, and after you get the hang of it all, it's smoother sailing.

[mimommy]

Hi there. Your post sounds so very...frustrated. I don't know if it will help, but I will share our healing story with you. My little girl was very, very sick for a long time until we finally figured out it was celiac disease. The diagnosis itself can be a long, painful series of frustrations. But, from a day and a half into the gluten free diet, she has seen nothing but recovery on every level--physical, mental, emotional. Yes, we have had some accidental slip-ups and unexplained issues that continue to elude us, but considering where she started this is as close to complete recovery as we could have hoped for. We are so very grateful that she has improved so much.

It is by all counts a PROCESS. A learning process, a grieving process, a healing process. Your body is it's own best diagnostician, in that it will always tell you when it is unwell. Take the time to understand your own feelings about this disease. Educate yourself, as you may unexpectedly discover a related or perhaps unrelated issue still affecting your health. DO NOT give up, or think that your health has somehow not measured up to what you think it should be, or the healing (and intrinsic sacrifice) is not worth it.

If it helps, maybe you could have your blood work re-tested in a few months. If you can set that 6 month date as a goal, then be tested again for antibodies, you may well see a significant drop in numbers there. Perhaps you need to avoid another food source as well. For me, soy is very rough on my system.

A disease does not rule your life. You survived this long not knowing it was even there. I have all the faith in the world that you will get through this and will one day soon be saying, "It's no big deal. It's just a way of life, that happens to be healthy for me."

Hang in there. Check back with your doctor. But don't give up.

[mushroom]

It would be awfully nice to hear some uplifting stories and to know there is light at the end of the tunnel.

a

There is light at the end of the tunnel, Anthony; but I suspect the tunnel is a little longer than you anticipated, and it may have some bends in it along the way before you see that light. The healing process itself can be quite a long one, some say it could take up to two years for the villi to be totally restored, although you should feel much better long before that.

The bends, as others have mentioned, could be intolerances to other foods because of the leaky gut, or disguised by the gluten symptoms. Without sounding too negative for you, I hope, it may be that you will temporarily or even longer-term have to eliminate some other things from your diet. Since lactose is digested by the lactase on the tips of the villi, most people have problems with lactose and/or casein at first. If you have not eliminated lactose, I would do it now if I were you. If just giving up lactose does not help, then give up all dairy. You may also experience problems with soy and with corn, and even some of the gluten-free grains are hard to digest at first. Are you taking digestive enzymes and probiotics to help your digestive system? These often help. Tell us a little more and we may be able to make some more suggestions for you.

But do hang in there. Two and a half months is not long enough to heal.

[IChaseFrisbees]

I'm with you here friend, it would be nice to hear some stories of complete recovery. I've improved only mildly, and if monday's endoscopy comes back fine and dandy (like everything else has, aside from the enterolab for gluten) I just don't know what I'm going to do!

So, no inspiring story for you, but I am in the same boat if that helps at all. One day at a time.

[jaime1103]

Hi,

I am sorry you are still suffering.

I have followed the diet without fail for just about a year and I am in COMPLETE recovery. My blood results have shown that I am no longer damaging tissue, all vitamin D, calcium levels are back to normal, and I am no longer suffering the neurological and joint issues that I was suffering. When I got this news from my dr I was so happy, it is such a hard diet to follow, and to know it was working was wonderful.

I hope this gives you some hope and that you are on the road to recovery.

[sbj]

2 1/2 months, I'm suffering worse than I was before, and I eat nothing processed . . .

Hi Anthony: I hope you start to feel better soon. 2 1/2 months is not really that long to expect results. You are going to have to be more patient and wait for at least 6 months if not longer. I also notice that you have never been diagnosed with celiac disease . . . perhaps you don't have celiac disease and that is why going gluten free hasn't helped?

[UnhappyCoeliac]

I agree mate!

I cant even get two weeks totally gluten free and we have people talking about two years they've got to be joking.

I am aympathic so in my guess.... I dont feel a difference if I have gluten or not, if i have 20 beers though Id feel sick but for me it simply keeps accidently slipping int

Today I am at a concert with no food to bring and no gluten free food in there soo... starve 14 hrs vs eat gluten... il be taking the gluten unfortunenly

I am also inclinded to believe that alot of the people talking about the healing dont actually know. They are not doctors they don't know the extent of your damage etc. My doctor said aim for for 2mths at first for me even though that is probably not fully healed it is a good start

[Gemini]

Hi everyone,

Not to be too negative, but it's getting a bit depressing for me to keep reading about people who have been gluten-free for so many month and years and are still having symptoms and all sorts of other problems. Is there anyone out there who can say that they've had complete cessation of all their symptoms after going on a gluten-free diet? I keep reading the "official" line that 99% of people with Celiac are able to live normal, healthy, symptom free lives after going gluten-free for a while. This certainly doesn't seem to be the case around here. After 2 1/2 months, I'm suffering worse than I was before, and I eat nothing processed, cook everything from scrarch, and have checked every last little thing possible from pet food to shampoo to old pots and pans etc. etc. etc. etc. etc. etc. etc. etc. It would be awfully nice to hear some uplifting stories and to know there is light at the end of the tunnel.

Anthony

Anthony.....the hardest thing a person can be today is patient. Most societies are impatient and want instant gratification, especially when illness is the issue. From my personal experience, the moment I committed to the gluten-free lifestyle, I never looked back. I was end stage, near to a feeding tube kind of Celiac and I NEVER want to be that sick again, period. In fact, the less I see of doctors in general, the better I do. However, my only issues are gluten and some dairy so I recovered at a steady pace and had no major setbacks. I was also older and did not have all the social issues to deal with that younger people do. Because I was so sick, I never even thought about cheating and have no cravings for anything containing gluten or dairy, which makes things much easier, mentally.

I think if a person is still having problems after a couple of months gluten-free, it would most likely be other food intolerances that could be the culprit. I'm sure that's not what you want to hear, either! Dairy is huge for Celiacs as lactose is broken down at the tip of the villi so if your villi are not completely healed, you could have a problem with that.

In all honesty, it took me about 3 years BUT every single one, and I mean every single one, of which there were many, of my symptoms has disappeared completely and I have zero issues with anything right now. I worked very hard at it so it is not just luck. I understand CC well and don't go overboard with it.....I do what's necessary. It is entirely possible for any Celiac to achieve this but it takes a lot of knowledge and dedication and patience. I think it is all worth the effort because at almost 50 years of age, , I am healthier and feel better than I did at 25. Do not give up and I would investigate other food intolerances, if I were you. If you only have gluten to worry about, you should be noticing differences by now. Even if you aren't healed 100%, you should be feeling better. Good luck to you and please do not give up.....you will feel better eventually, in fact, you should feel marvelous once your body heals and you have figured out what foods bother you. There is no quick fix with celiac disease!

[sugarsue]

Hello Anthony. My dd is at the beginning of her journey still, she is doing much better but not healed completely yet. Your post however, has me thinking of a story of my past that is not gluten related and I hope you don't mind if I share it with you.

My first daughter is a twin and her twin died when he was a month old in the hospital from complications at birth. I joined some wonderful internet forums for support to those who have lost one or more multiples. They were/are amazing support systems, but also completely depressing. Everyone there was suffering so much just like me. I wanted to hear success stories of others who had survived, who had gone on to be happy and did not want to die. I had to take breaks sometimes because I could not stand to hear anyone still grieving longer than me, or the newly berieved kept coming......!!! Eventually I realized that the forum was filled with people who were suffering, who did need support and help and with some people who stayed around to offer support for those who still suffered. But most people who had worked through their suffering had moved on and no longer visited the boards.

Now, almost 8 years later, I hardly ever go back to the twin loss boards and the only reason I do is to try to let the new members know that things will get better, that it may take a long time, but their lives will go on and time will pass and they will heal.

I don't know if that is helpful but I appreciate being able to tell this story as it helps me to see how far I've come so I thank you! I know that my dd will continue to get better and I need to stick with it and hang in there and continue to track how many things are improving for her. I do hope that my comparison is accurate and that those who have really healed and have embraced the gluten-free lifestyle and are thriving are out there somewhere and not actively posting any more. I sincerely hope that you see the same in your life as well.

[hal000]

I'm at the same sort of stage as you Anthony and to put it politely feel crappy.

I have to keep remembering that I've lived with this condition for years and it will take time to recover. I think in way it's now more frustrating because we know what's wrong, are doing everything right but haven't felt the rewards yet.

Hopefully the rewards will come - just take a day at a time, Hal

[Gfresh404]

I'm at the same sort of stage as you Anthony and to put it politely feel crappy.

I have to keep remembering that I've lived with this condition for years and it will take time to recover. I think in way it's now more frustrating because we know what's wrong, are doing everything right but haven't felt the rewards yet.

Hopefully the rewards will come - just take a day at a time, Hal

I think you said it right. It's like I almost remembering having more energy before going gluten-free, I wonder why we get more tired once we go off gluten. Must be because we're actually properly digesting food now? idk

I just wish time would speed up! I hate being tired all the time, especially at college. Sometimes it is so hard.

[Wonka]

Anthony, thanks for asking your question. I too, have been healing slowly, have discovered many other intolerances and have had occasional accidental gluten ingestion. 1 year and 3 months into this and I'm still having issues. What I have had to do is look at where I was at back then, and then see how far I have come. There is progress, and I need to be patient (not one of my strengths, lol).

Thankyou everyone else, for giving us hope that we too will get back to normal (what ever that may be).

[sugarsue]

Thankyou everyone else, for giving us hope that we too will get back to normal (what ever that may be).

The "new normal"... that's what they say with grief too. That we will never be the same but there will be a new normal when we can move on and heal. I see that with my dd (6) too. She grieves over the loss of gluten, over the loss of being able to eat whatever her friends eat and then she's waiting for her body to get back... to normal.

Susan

[prayin4achange]

Anthony.....the hardest thing a person can be today is patient. Most societies are impatient and want instant gratification, especially when illness is the issue. From my personal experience, the moment I committed to the gluten-free lifestyle, I never looked back. I was end stage, near to a feeding tube kind of Celiac and I NEVER want to be that sick again, period. In fact, the less I see of doctors in general, the better I do. However, my only issues are gluten and some dairy so I recovered at a steady pace and had no major setbacks. I was also older and did not have all the social issues to deal with that younger people do. Because I was so sick, I never even thought about cheating and have no cravings for anything containing gluten or dairy, which makes things much easier, mentally.

I think if a person is still having problems after a couple of months gluten-free, it would most likely be other food intolerances that could be the culprit. I'm sure that's not what you want to hear, either! Dairy is huge for Celiacs as lactose is broken down at the tip of the villi so if your villi are not completely healed, you could have a problem with that.

In all honesty, it took me about 3 years BUT every single one, and I mean every single one, of which there were many, of my symptoms has disappeared completely and I have zero issues with anything right now. I worked very hard at it so it is not just luck. I understand CC well and don't go overboard with it.....I do what's necessary. It is entirely possible for any Celiac to achieve this but it takes a lot of knowledge and dedication and patience. I think it is all worth the effort because at almost 50 years of age, , I am healthier and feel better than I did at 25. Do not give up and I would investigate other food intolerances, if I were you. If you only have gluten to worry about, you should be noticing differences by now. Even if you aren't healed 100%, you should be feeling better. Good luck to you and please do not give up.....you will feel better eventually, in fact, you should feel marvelous once your body heals and you have figured out what foods bother you. There is no quick fix with celiac disease!

I am very encouraged by your post. I have not officially been diagnosed with Celiac, but I have so many of the symptoms it's unbelievable!!! Ive been told I have hypothyroid, dyspepsia, depression, IBS, GERD, major exhaustion, ect... and still feel aweful although im taking all this medicine. I had a blood test done but the doctor was random and a creep so when it was negative I straight up didnt trust him. I had an endoscopy done (with a biopsy) and found mild erythema and petechiae. She said it was non erosive gastritis and gave me meds for GERD but never checked for celiac although I did ask her to. I didnt know she never checked for celiac until just a week ago when I called to ask the nurse if she ever checked it. I know at least 10 people who have celiac, and the wife of one and my girl friend who both have it were positive I have it and encouraged me to do a gluten-free diet to see if it helps. The nurse I talked to also encouraged me to try it. She said it's the cheapest way since the tests are so expensive.

Needless to say, I have NO IDEA wht I am doing. Can anyone give me an idea of what I should be going through, feeling, noticing AND what should I eat during the first month to notice the most improvement?! This has been a seriously stressful week considering I just started the diet on Sunday and my husband's car died, my granny's in the hospital, and I am so sick today (some kind of virus) so I dont think how I feel currently is very accurate. I would appreciate ANY help. THANK YOU SO MUCH!!

Jenn

[Wonka]

Needless to say, I have NO IDEA wht I am doing. Can anyone give me an idea of what I should be going through, feeling, noticing AND what should I eat during the first month to notice the most improvement?! This has been a seriously stressful week considering I just started the diet on Sunday and my husband's car died, my granny's in the hospital, and I am so sick today (some kind of virus) so I dont think how I feel currently is very accurate. I would appreciate ANY help. THANK YOU SO MUCH!!

Jenn

Hi Jenn,

I do not have a diffinitive diagnosis, I am diagnosed by symptoms. I had made the mistake of going gluten free before testing (I had done an elimination diet and discovered that wheat, rye and barley were a problem, it was years later that I met a person with Celiac Disease and she told me that she thought that was what I had. I couldn't do a gluten challenge, as it made me far too ill, but now, my daughter has been diagnosed). Despite all that, I had my fatigue lift in about 1 week from going gluten free, as well as an amazing decrease in the amount of pain in my body (I also have fibromyalgia), bloating, gas, flatulence, belching and nausea all reduced or went away completely.

[Mrs. Smith]

Hi everyone,

Not to be too negative, but it's getting a bit depressing for me to keep reading about people who have been gluten-free for so many month and years and are still having symptoms and all sorts of other problems. Is there anyone out there who can say that they've had complete cessation of all their symptoms after going on a gluten-free diet? I keep reading the "official" line that 99% of people with Celiac are able to live normal, healthy, symptom free lives after going gluten-free for a while. This certainly doesn't seem to be the case around here. After 2 1/2 months, I'm suffering worse than I was before, and I eat nothing processed, cook everything from scrarch, and have checked every last little thing possible from pet food to shampoo to old pots and pans etc. etc. etc. etc. etc. etc. etc. etc. It would be awfully nice to hear some uplifting stories and to know there is light at the end of the tunnel.

Anthony

I feel you, too. I am 3 mos. gluten free and I go from feeling really great to having the symptoms again. They are getting milder every time. I am really starting to believe people on here when they say it takes a long time. Being virtually poisoned our whole life on top of being very nutrient deficient, will in my opinion take a long time to overcome. Im getting more and more strict about what I will ingest because I want to live the best life I possibly can. I think vitamins and supplements are really important for healing as well. I personally take a multi, B12, DHA, Cal/mag, acidopholis and digestive enzymes everyday. Ginger tea gets my stomach through the hard times and Siberian Pine Nut oil has tons of antioxidants that heal the GI tract. I eat mostly meat, veggies, fruit and nuts. I only drink water, tea and Rice milk. No spicy foods either until I heal and I LOVE mexican Hope I helped. Dont give up, stick to it, take your vitamins and try to love life and laugh! It will take your mind off feeling crappy. Hope you feel better.

[prayin4achange]

Hi Jenn,

I do not have a diffinitive diagnosis, I am diagnosed by symptoms. I had made the mistake of going gluten free before testing (I had done an elimination diet and discovered that wheat, rye and barley were a problem, it was years later that I met a person with Celiac Disease and she told me that she thought that was what I had. I couldn't do a gluten challenge, as it made me far too ill, but now, my daughter has been diagnosed). Despite all that, I had my fatigue lift in about 1 week from going gluten free, as well as an amazing decrease in the amount of pain in my body (I also have fibromyalgia), bloating, gas, flatulence, belching and nausea all reduced or went away completely.

Thanks for the reply. Over the past wk of trying my best to avoid gluten, my amount of chest pain, gas, and headaches have decreased tremendously. although the bloating is still horrible and still getting acid reflux. The fact im really sick this whole wknd doesnt really help haha.. Im taking lots of meds and wondering if those may be covering up some symoptoms or what not. Im gonna stay on them until otherwise notified by my doc. Although my husband is a med student and will b a doctor one day, I get really annoyed by them frequently. they all seem to act like im a hypocondriact (however u spell it) or that I just have a million random things wrong and try to stuff all these pills down my throat or tell me to deal with it. Ive had really bad trouble since 12th grade (dec 2002) and would really appreciate some sympathy from the medical realm. It's great to hear you are feeling much better! the Lord is good

[Gemini]

I am very encouraged by your post. I have not officially been diagnosed with Celiac, but I have so many of the symptoms it's unbelievable!!! Ive been told I have hypothyroid, dyspepsia, depression, IBS, GERD, major exhaustion, ect... and still feel aweful although im taking all this medicine. I had a blood test done but the doctor was random and a creep so when it was negative I straight up didnt trust him. I had an endoscopy done (with a biopsy) and found mild erythema and petechiae. She said it was non erosive gastritis and gave me meds for GERD but never checked for celiac although I did ask her to. I didnt know she never checked for celiac until just a week ago when I called to ask the nurse if she ever checked it. I know at least 10 people who have celiac, and the wife of one and my girl friend who both have it were positive I have it and encouraged me to do a gluten-free diet to see if it helps. The nurse I talked to also encouraged me to try it. She said it's the cheapest way since the tests are so expensive.

Needless to say, I have NO IDEA wht I am doing. Can anyone give me an idea of what I should be going through, feeling, noticing AND what should I eat during the first month to notice the most improvement?! This has been a seriously stressful week considering I just started the diet on Sunday and my husband's car died, my granny's in the hospital, and I am so sick today (some kind of virus) so I dont think how I feel currently is very accurate. I would appreciate ANY help. THANK YOU SO MUCH!!

Jenn

Jenn.....I hear your pain! It can be SO frustrating trying to obtain a diagnosis for this. It took me 20 years of active symptoms and one trip to the emergency room after passing out in a restaurant one night because I was so run down, and STILL I had to press for testing for Celiac. Let me try and give you a few pointers on what to do the first month.....

I ate naturally gluten-free foods, including lots of steamed veggies, brown rice, potatoes and chicken and fish for the first month. You should strive to eat proteins and fiber. I also went heavy on the fruit, to satisfy my sweet tooth and give me some more fiber and fluids. Keep it simple so your gut will calm down and start to heal. If you are craving carbs, Whole Foods market or any market that carries some gluten-free prepared foods, has gluten-free baking mixes for brownies or cookies. Many are delicious! I bought a small amount of mixes and a loaf of the Whole Foods gluten-free Prairie bread. I am the type who has to have some toast in the morning and this bread was not bad, when toasted. Peanut butter is excellent on it, keeps you full longer and is a source of protein. You can ask your gluten-free friends which breads they like for taste but be prepared...gluten-free bread is expensive and not all of it is palatable. Eventually, you will find some you like but give your brain time to re-adjust to the different taste and texture. gluten-free breads can be delicious but they are different.

Go easy on the dairy too because lactose is broken down in the tip of the villi in your intestines and many Celiacs have a problem with dairy also. I did, but after I healed I find I can tolerate small amounts. I use soy milk for most of my dairy needs but go very lite on dairy in general. This may sound daunting, at first, but as you start to feel better, you'll find you don't crave your "old life" foods nearly as much.

As for utensils, replace or have for separate use for yourself any wooden spoons or anything plastic, like a colander. Any pots or pans that have a porous surface like cast iron or anything old and scratched, especially that's teflon coated should not be used by you. You do not have to replace everything, especially stainless steel, aluminum, etc. Just keep in mind porous surfaces because these can become laden with gluten residue that may hinder recovery time. I did not go overboard with it but thought it out carefully and replaced what needed to be replaced. My husband will still cook pasta in a pan but scrub it out well and I will use it for myself later. Many people on this forum will not agree with that but we do that with stainless and it is NOT a problem. Common sense should reign here! I re-test my blood work on a regular basis and I must be doing it right as my numbers are great. Harder for those who do a dietary trial alone, I agree, but you do not have to isolate everything.

One thing you HAVE to do is have a dedicated toaster for yourself.....no ifs, ands or buts on that one!

Toasters are crumb fields and you cannot guarantee your toast will not be coated with wheat when you take it out.

As for cosmetics, many choose to go completely gluten-free on that issue but I have not and have not had any problems, obviously. That is a choice issue and if you feel uncomfortable using gluten containing topical products, then by all means go gluten-free. The gluten molecule is too large to pass through the skin and you MUST ingest gluten into your GI tract to spark an autoimmune reaction....it doesn't work any other way. Unless you fear swallowing gluten filled shampoo in the shower, this is a decision you'll have to make for yourself.

I am sure I may have forgotten something but I have written enough for you now.....don't want to overload you, especially with your horrible week! I hope your grandmother is OK and she feels better soon.

Stress can really aggravate Celiac symptoms but it's hard not to be somewhat stressed in today's world! Take a deep breath and relax. I would encourage you to get tested but we all know how that goes sometimes so if you need to do a dietary trial, go for it. Any questions, ask away! The diet is fairly easy to master but it takes some reading and patience on your part. If there is a particular food you feel you cannot live without, many here have found awesome gluten-free versions or have great recipes so don't be afraid to ask for help.

[Gemini]

Thanks for the reply. Over the past wk of trying my best to avoid gluten, my amount of chest pain, gas, and headaches have decreased tremendously. although the bloating is still horrible and still getting acid reflux. The fact im really sick this whole wknd doesnt really help haha.. Im taking lots of meds and wondering if those may be covering up some symoptoms or what not. Im gonna stay on them until otherwise notified by my doc. Although my husband is a med student and will b a doctor one day, I get really annoyed by them frequently. they all seem to act like im a hypocondriact (however u spell it) or that I just have a million random things wrong and try to stuff all these pills down my throat or tell me to deal with it. Ive had really bad trouble since 12th grade (dec 2002) and would really appreciate some sympathy from the medical realm. It's great to hear you are feeling much better! the Lord is good

Yup....I did forget something important! All of those meds you currently take have to be checked for gluten-free status. Call the manufacturer and ask or ask your pharmacist to check for you. Even if you follow a gluten-free diet religiously but forget to check meds, you'll still have symptoms!

[prayin4achange]

Jenn.....I hear your pain! It can be SO frustrating trying to obtain a diagnosis for this. It took me 20 years of active symptoms and one trip to the emergency room after passing out in a restaurant one night because I was so run down, and STILL I had to press for testing for Celiac. Let me try and give you a few pointers on what to do the first month.....

I am so glad to have people that understand me! I am also so sorry to hear how much people are suffering through something that should be so easy but really isnt. Only take out gluten right? ha! not so simple! Im so glad you have found your diagnosis. Im going to try to get the TTG-IgA and EMA-IgA/IgG blood tests run asap. Do you know if you have to be ingesting gluten for these tests to work??

I ate naturally gluten-free foods, including lots of steamed veggies, brown rice, potatoes and chicken and fish for the first month. You should strive to eat proteins and fiber. I also went heavy on the fruit, to satisfy my sweet tooth and give me some more fiber and fluids. Keep it simple so your gut will calm down and start to heal. If you are craving carbs, Whole Foods market or any market that carries some gluten-free prepared foods, has gluten-free baking mixes for brownies or cookies. Many are delicious! I bought a small amount of mixes and a loaf of the Whole Foods gluten-free Prairie bread. I am the type who has to have some toast in the morning and this bread was not bad, when toasted. Peanut butter is excellent on it, keeps you full longer and is a source of protein. You can ask your gluten-free friends which breads they like for taste but be prepared...gluten-free bread is expensive and not all of it is palatable. Eventually, you will find some you like but give your brain time to re-adjust to the different taste and texture. gluten-free breads can be delicious but they are different.

Thank you so much for all the wonderful details. I felt so lost and now have some ideas of what to do. I eat REALLY basic right now and every time i try to venture out i always end up sick I love all the foods you listed.. especially fruit!! I have already given up desserts for the most part.. kind of dont even like them anymore. I just came to grips with some tears that unless I wanna be on the bed sick I have to let them go.

As for utensils, replace or have for separate use for yourself any wooden spoons or anything plastic, like a colander. Any pots or pans that have a porous surface like cast iron or anything old and scratched, especially that's teflon coated should not be used by you. You do not have to replace everything, especially stainless steel, aluminum, etc. Just keep in mind porous surfaces because these can become laden with gluten residue that may hinder recovery time. I did not go overboard with it but thought it out carefully and replaced what needed to be replaced. My husband will still cook pasta in a pan but scrub it out well and I will use it for myself later. Many people on this forum will not agree with that but we do that with stainless and it is NOT a problem. Common sense should reign here! I re-test my blood work on a regular basis and I must be doing it right as my numbers are great. Harder for those who do a dietary trial alone, I agree, but you do not have to isolate everything.

I NEVER thought about all this stuff!!! No wonder I am feeling kinda gross after the soup I just ate. My husband cooked noodles in that pot last night and he doesnt actually clean the best lol. AMAZING! who knew? haha... I appreciate your thoughts and prayers for my grandma. The last I heard she's doing better but not out of the hospital yet. I was just wondering.. how are you feeling these days? are you mostly better? Thanks again!

Jenn

[Gemini]

I am so glad to have people that understand me! I am also so sorry to hear how much people are suffering through something that should be so

easy but really isn't. Only take out gluten right? ha! not so simple! I'm so glad you have found your diagnosis. I'm going to try to get the

TTG-IgA and EMA-IgA/IgG blood tests run asap. Do you know if you have to be ingesting gluten for these tests to work??

Absolutely! If you go gluten-free before testing, it will skew the results. It's Easter and if I were you, I would do what I did......go and gorge

yourself on Hot Cross Buns! I was deathly ill from eating them at Easter 4 years ago but I got my diagnosis! Keep eating gluten until you

have your blood work done. I want to emphasize to you that if your blood work comes back negative, it does not mean you do not have celiac disease.

Many people are serio-negative on the blood work and as it's an autoimmune disease, that is common. It can be very hard to diagnose

autoimmune problems in general. Make sure your doctor does BOTH those tests because those 2 are the most accurate for a diagnosis. It is

preferable to do a total Celiac panel, though.

Thank you so much for all the wonderful details. I felt so lost and now have some ideas of what to do. I eat REALLY basic right now and

every time i try to venture out i always end up sick I love all the foods you listed.. especially fruit!! I have already given up

desserts for the most part.. kind of dont even like them anymore. I just came to grips with some tears that unless I wanna be on the bed

sick I have to let them go.

Oh, but you can have dessert. It just has to be gluten-free and most can be duplicated using gluten-free flours.

I NEVER thought about all this stuff!!! No wonder I am feeling kinda gross after the soup I just ate. My husband cooked noodles in

that pot last night and he doesn't actually clean the best lol. AMAZING! who knew? haha... I appreciate your thoughts and prayers for my

grandma. The last I heard she's doing better but not out of the hospital yet. I was just wondering.. how are you feeling these days?

are you mostly better? Thanks again!

Soup can be a mine field for hidden gluten so most Celiacs only eat their own homemade soup. You do have to scrub and clean well if you

want to share pots and pans, though. Also, that doesn't apply to baking pans for desserts. I cleaned all mine out really well and then ran them

through the dishwasher. I threw out the older, scratched up ones and bought new. After that, I only will bake gluten-free desserts in my pans because

of the use of flour and how it gets into nooks and crannies. Actually, I only will bake gluten-free desserts and my husband eats those and

loves them. If he wants regular dessert, he has to buy it or get it in a restaurant.

I would highly suggest buying a couple of books to get you started. My personal favorite and required reading is called

"Celiac Disease: A Hidden Epidemic." The author is Dr. Peter Green and his book tells you the process of Celiac Disease so you know exactly

what it entails and what to do and not to do. It really is a great book and easy read. The chapter on your digestive system is mind blowing and

will enlighten you about why you feel the way that you do. The other book is "Gluten Free for Dummies." Yes, it's one of those

Dummy books but it's excellent at getting you started because there are a few important things Celiacs need to know and this book keeps it

simple. I used reference books for the first year and then graduated!

As to how I feel...it's amazing. I was down to 97 pounds and losing weight every day. I could not leave the house I was so sick and it was

downright scary. At one point I thought I was going to die. Fast forward 4 years and I have gained 16 pounds and have never felt better.....really. I have

absolutely zero stomach issues and because I have calmed my immune system down so much, my thyroid problems are getting better and I have

been scaling back on my thyroid meds lately as I don't need as much. It really doesn't get any better than that! Yes, food can really mess a

person up but it can be reversed with patience and good, gluten-free eating habits. Start slow and don't become discouraged. If you have a problem with wheat,

you should start feeling better very soon but it can take awhile for it to happen. It took me about 3 years before all my symptoms and residual problems disappeared but it took me 20 years to get to end-stage Celiac. I feel fortunate to feel this good after all that!

[dilettantesteph]

My son was diagnosed at age 10. He used to beat up his sister constantly, He was very ill humored. He couldn't do his school work. He couldn't remember to bring his homework home. He didn't write his assignments in his planner. Teachers kept coming down on me because I wasn't making him do his homework, but I neither of us even knew he had homework. He was a complete air head. He was also totally skinny even though he would eat a ton. Then he started having bad chest pain and throwing up 10 times a day. Fortunately he has a wonderful doctor who diagnosed him quickly.

Now a year and a half later he has gained a ton of weight, grown a ton. He has stopped hitting his sister and is great humored and a joy to be around. He is doing great in school and handles all his homework himself. He hasn't thrown up for about a year. He does get a bit grumpy from time to time when I think he picks up a bit of gluten at school. He is coping with celiac disease wonderfully. It can be done.

[GFMM88]

Anthony:

I feel the same way and I was even more discouraged at first to note that only a few people responded that they do feel completely recovered. But it is these few people that I am going to listen to because they have clearly figured out how to stick to the diet completely (which can definitely take a few years) and they can attest that they feel great. I have yet to get to that point after going completely gluten free for nine months (and halfway gluten free for eight years due to a lack of understanding about my Celiac diagnosis at age 12). But I have complete faith that I will continue to get better, and that you will too. It is also very possible that more people are not posting their success stories because they are busy living their healthy lives, and have less of a need to refer to this forum.

What keeps me going is knowing that there will be slip-ups, but I am mostly on track to get better. Arm yourself with as much information as you can so that you can avoid needless mistakes, and accept that there is a very good chance you will accidentally ingest gluten in the near future. Have a plan in place to get yourself through those days. Know that your symptoms will eventually end and you will feel better again. Good luck!

[GFMM88]

I should also note that while I do not consider myself 100 percent recovered, I do consider myself 90 percent recovered. I have days where I feel amazed that people were feeling this good the whole time I was sick! I cannot believe I can have so much energy and be so free of anxiety and stomach pain. I keep feeling better and better. The fact that I still have a few lingering symptoms is discouraging, but please be encouraged by the fact that I have seen an incredible change, and I expect things to continue to get better. I am sure that by adhering to the gluten free diet, staying away from all sources of cross contamination, figuring out if you need to stay away from dairy and soy first and then any other foods, and speeding up the healing process by removing as much stress as possible, exercising, and sleeping well, you will keep feeling better and better as well.