Recovery Timeline

[knittygirl1014]

Hello everyone,

This is my first post although I have been lurking about for several months. All the information and support here has gotten me through a very tough time and I don't know what I would have done without it! So I thought it would be a good idea to post my "timeline" and story now that I am feeling better so other people can take some hope away from it. If you think it is a good idea, post yours too! I think it would be so helpful to have a short summary of what different types of people go through so you can compare your recovery to those in a similar situation. For example, if you are young and haven't had the disease that long, you might be more likely to recover faster than someone who has been undiagnosed for 40 years. Anyway, here goes...

Age: 25

Gender: Female

Length of feeling sick/having symptoms: 2 years

# of doctors consulted: Lost count, about 5 or 6

Officially diagnosed: No

Additional intolerances: Dairy, Soy, Egg

Time since going gluten-free: 5 months

Weight lost or gained before diagnosis: 25 lbs lost

Month 1:

Felt worse before feeling better! Very, very hard emotionally to give up gluten. More cravings than you could imagine. Very exhausted and sore. Difficult to even walk the dog.

Month 2: Started discovering new recipes, gluten free treats. Also started gaining weight! (Duh!)

Month 3: Intestines still unhappy. Starting to get a little less achey and sore. Emotionally feeling very unstable still (depressed, anxious). Glutened a couple of times, missed some work.

Month 4: Cut out soy, dairy and eggs. Very frustrating at first. Towards the end of the month, starting to feel good.

Month 5: Amazing! My body is discovering a rhythm and routine again! Joined a gym at the end of the month. I had gained over 20 lbs back and I am not happy about it!! There was a time I thought I would never feel better when I was diagnosed with fibromyalgia... I can't believe the difference and I am so grateful every day for my newfound health. I am off all meds except birth control... no more narcotics for pain or antidepressants or anything.

Unexpected benefits of going gluten free: skin totally clear, seasonal allergies gone, dark circles under eyes gone, hair growing back thicker, anxiety gone, insomnia gone (yay sleep!) and morning sleepiness gone

I want anyone who is feeling depressed and hopeless to know that you can feel better! I was probably the worst offender with feeling sorry for myself and being impatient about feeling "normal" again. I don't want to give anyone false hope or anything if you have other circumstances, but I didn't start feeling better until I took dairy, eggs and soy out of my diet. I still hold out hope that I will be able to add them back eventually, but for now having energy again is 100% worth it. I know it is hard to get a picture of how far I have come because I wasn't posting when I was feeling poorly (not enough energy to do it!) but believe me, I am amazed at the progress.

Now, my favorite treats are: strawberries, homemade "carrot cake" muffins (no frosting), trail mix and date balls (dates, rice chex, honey, PB, flax seeds and powdered gluten free oats), carob fudge

[mellowyellowmushroom]

Thanks for the post! I've been feeling awfully low as I recover, not all better and it's really wonderful to hear that you did finally feel better.

I've been eating nuts, fruit and vebetables. Still off though...

[Cinnamon7778]

Thanks for the post,

Today is my 3rd day and I fell so exhasuted. I was diagnosed with fibromyalgia and Chronic fatigue. I'm not sure if the irritability, exhaustion etc are from the latter or celiac disease. However, I refuse to give in!!! Thank God that I'm a stay a home mom and off from school until September. I would defintely be in trouble. I went to the wholefood market and picked up some grocery all organic, Gluten, wheat etc. I even wrote out a list of things I can and cannot eat so that I could check the labels twice. I know that there is going to be some discomfort. However, in 6 months I'll be posting letting everyone no about my great accomplishment i.e. healing and wholeness. You said that you signed up for a gym kudos for you. I crave the moment when I can jog along the beach and work out without becoming exhausted.Please continue to send words of encouragement and hope.

Take care.

P.s

Is exhaustion and soreness common in the first few weeks?

Hello everyone,

This is my first post although I have been lurking about for several months. All the information and support here has gotten me through a very tough time and I don't know what I would have done without it! So I thought it would be a good idea to post my "timeline" and story now that I am feeling better so other people can take some hope away from it. If you think it is a good idea, post yours too! I think it would be so helpful to have a short summary of what different types of people go through so you can compare your recovery to those in a similar situation. For example, if you are young and haven't had the disease that long, you might be more likely to recover faster than someone who has been undiagnosed for 40 years. Anyway, here goes...

Age: 25

Gender: Female

Length of feeling sick/having symptoms: 2 years

# of doctors consulted: Lost count, about 5 or 6

Officially diagnosed: No

Additional intolerances: Dairy, Soy, Egg

Time since going gluten-free: 5 months

Weight lost or gained before diagnosis: 25 lbs lost

Month 1:

Felt worse before feeling better! Very, very hard emotionally to give up gluten. More cravings than you could imagine. Very exhausted and sore. Difficult to even walk the dog.

Month 2: Started discovering new recipes, gluten free treats. Also started gaining weight! (Duh!)

Month 3: Intestines still unhappy. Starting to get a little less achey and sore. Emotionally feeling very unstable still (depressed, anxious). Glutened a couple of times, missed some work.

Month 4: Cut out soy, dairy and eggs. Very frustrating at first. Towards the end of the month, starting to feel good.

Month 5: Amazing! My body is discovering a rhythm and routine again! Joined a gym at the end of the month. I had gained over 20 lbs back and I am not happy about it!! There was a time I thought I would never feel better when I was diagnosed with fibromyalgia... I can't believe the difference and I am so grateful every day for my newfound health. I am off all meds except birth control... no more narcotics for pain or antidepressants or anything.

Unexpected benefits of going gluten free: skin totally clear, seasonal allergies gone, dark circles under eyes gone, hair growing back thicker, anxiety gone, insomnia gone (yay sleep!) and morning sleepiness gone

I want anyone who is feeling depressed and hopeless to know that you can feel better! I was probably the worst offender with feeling sorry for myself and being impatient about feeling "normal" again. I don't want to give anyone false hope or anything if you have other circumstances, but I didn't start feeling better until I took dairy, eggs and soy out of my diet. I still hold out hope that I will be able to add them back eventually, but for now having energy again is 100% worth it. I know it is hard to get a picture of how far I have come because I wasn't posting when I was feeling poorly (not enough energy to do it!) but believe me, I am amazed at the progress.

Now, my favorite treats are: strawberries, homemade "carrot cake" muffins (no frosting), trail mix and date balls (dates, rice chex, honey, PB, flax seeds and powdered gluten free oats), carob fudge

[Matt007b]

to the author of this post..thanks for posting this..

i've been reading other people feeling better in days and I keep thinking "man you lucky devil's..I'm on week 3 and I still feel like crap" and then i've read other posts of people who said they were sick for 10 months.

I've been sick for 3 1/2 years and the doctors suspect malabsorbtion caused by celiac but I haven't gotten a confirmation. Negative blood test but we all know how worthless that is.

I'm also dealing with insomnia/anxiety/IBS-C/nausea...panic attacks and such. So hopefully i'll recover like you did knittygirl..I can't wait it's gonna be hard waiting though :S but I have little to lose. (also i'm eating eggs in the morning..wonder if that's a problem...mm..)

[marthamom]

Hi Everyone,

I thought I'd share my timeline so far as well......

I am a 39-year-old female, and I started having GI symptoms about 5 years ago after the birth of my son. I also have a history of anxiety/panic attacks and migraines, as well as another autoimmune disorder (ITP--a chronic low blood platelet count), which I had for about 12 years. Just when that seemed to get better, I began having all of the GI symptoms.

I was diagnosed in September '08 by a positive blood test and positive endoscopy---according to the pathologist, the damage to my intestines was pretty severe (I think it was near total villous atrophy). I have been strictly gluten free since then, and my antibodies have come down, but they are still not in the normal range, which is very discouraging. I still am having GI symptoms frequently too, although I guess it makes sense that if the autoimmune reaction is still taking place, it's not surprising that I would have symptoms. I haven't gained any weight (I'm slightly underweight), and my bloodwork showed a vitamin D deficiency. A bone scan showed that I have mild osteopenia, and I still show some signs of malabsorption (fat in the stool---sorry if that is tmi!). Ugh---I really am so careful about my diet and food prep etc. and don't think I am getting cross contaminated.

The good news is that I haven't had one single migraine since I went gluten free, and my anxiety level definitely seems lower.

But I'm just feeling discouraged that things seem to be healing so slowly. And (being the anxious person I am!), I worry that the longer the healing takes, the more risk there is of things like malignancies, etc. I know some people who felt 100% better within weeks of going gluten free, and that's just not been my experience.

I'd love to hear any of your experiences---good luck (and quick healing!) to all of you.

[blancasagro]

Hello everyone,

This is my first post although I have been lurking about for several months. All the information and support here has gotten me through a very tough time and I don't know what I would have done without it! So I thought it would be a good idea to post my "timeline" and story now that I am feeling better so other people can take some hope away from it. If you think it is a good idea, post yours too! I think it would be so helpful to have a short summary of what different types of people go through so you can compare your recovery to those in a similar situation. For example, if you are young and haven't had the disease that long, you might be more likely to recover faster than someone who has been undiagnosed for 40 years. Anyway, here goes...

Age: 25

Gender: Female

Length of feeling sick/having symptoms: 2 years

# of doctors consulted: Lost count, about 5 or 6

Officially diagnosed: No

Additional intolerances: Dairy, Soy, Egg

Time since going gluten-free: 5 months

Weight lost or gained before diagnosis: 25 lbs lost

Month 1:

Felt worse before feeling better! Very, very hard emotionally to give up gluten. More cravings than you could imagine. Very exhausted and sore. Difficult to even walk the dog.

Month 2: Started discovering new recipes, gluten free treats. Also started gaining weight! (Duh!)

Month 3: Intestines still unhappy. Starting to get a little less achey and sore. Emotionally feeling very unstable still (depressed, anxious). Glutened a couple of times, missed some work.

Month 4: Cut out soy, dairy and eggs. Very frustrating at first. Towards the end of the month, starting to feel good.

Month 5: Amazing! My body is discovering a rhythm and routine again! Joined a gym at the end of the month. I had gained over 20 lbs back and I am not happy about it!! There was a time I thought I would never feel better when I was diagnosed with fibromyalgia... I can't believe the difference and I am so grateful every day for my newfound health. I am off all meds except birth control... no more narcotics for pain or antidepressants or anything.

Unexpected benefits of going gluten free: skin totally clear, seasonal allergies gone, dark circles under eyes gone, hair growing back thicker, anxiety gone, insomnia gone (yay sleep!) and morning sleepiness gone

I want anyone who is feeling depressed and hopeless to know that you can feel better! I was probably the worst offender with feeling sorry for myself and being impatient about feeling "normal" again. I don't want to give anyone false hope or anything if you have other circumstances, but I didn't start feeling better until I took dairy, eggs and soy out of my diet. I still hold out hope that I will be able to add them back eventually, but for now having energy again is 100% worth it. I know it is hard to get a picture of how far I have come because I wasn't posting when I was feeling poorly (not enough energy to do it!) but believe me, I am amazed at the progress.

Now, my favorite treats are: strawberries, homemade "carrot cake" muffins (no frosting), trail mix and date balls (dates, rice chex, honey, PB, flax seeds and powdered gluten free oats), carob fudge

I wish I could post my timeline, maybe in 5 months. I'm 26, I have always had stomach problems but the thing got bad maybe like a year ago. Had constantly diarrhea for a month lost 14 pounds. Diagnose by blood test, biopsy negative. I've been gluten and lactose free for like three weeks. The diarrhea stop at the fourth day. Still have some anxiety, insomnia, sleepiness and pain. The symptoms are getting better slowly, but I'm feeling the difference. Dr. said that my intestine didn't look so bad, he have seen worst, so theres hope. Got glutened on 4th of July. Favorite treats bananas,tapioca bread, peanuts, fruit juice (all flavors) I will recommend, gluten free should be lactose free too, and the best way to go gluten free is natural gluten free like vegetables, fruits, meats that way you don't have to worry about hidden ingredients. Anxiety is horrible, I control that with yoga, pilates, praying and of course the diet and I'm having less episodes.

[Roda]

I am a 36 year old female.

2/06--Problems started heart related and heartburn. Two ER visits and countless dr appts

12/06--anemic took iron pills which made heartburn worse.

03/07--self reffered to an endocrinologist for my hashimotos. Regulated it and further revealed extreme iron deficiency. Tried to treat iron def. but made heartburn worse.

09/08-- positive celiac screening test (ttg) asked for it from information I found while looking into iron deficiency and hashimotos

10/08--had EGD and biopsy and was positive

10/30/08--went gluten free

The first couple months were a real learning period for me. Within the first few weeks my hearburn was gone! Had two known glutenings and hearburn instantly came back along with constipation.

01/09--Vitamin D deficient began supplementation and within 3-4 weeks started feeling like a new person. Lots of energy. However it was short lived because I started having heart symptoms again and was exercise intolerent. Tachycardia and sob.

03/09--Dr. felt I was getting too much thyroid meds and was causing sx. Lowered dose for first time in 9 years.

06/09--tried gluten free oats for the first time since going gluten free and cannot tolerate them. Heartburn, gassy with pain, bloated and contipation.

Present--Overall I feel better. Still get occasional heartburn but most is from not drinking enough water while working at night. Vitamin D deficiency is improving labs went up. Still extremely iron deficient with out anemia and think this is causing my heart symptoms and sob and exercise intolerance. I have gained 20 lb. since going gluten free and was slightly overweight to begin with.

[OptimisticMom42]

Timeline.......

I'm 42, was sick for 9 months before diagnosis.

I'm almost 5 months gluten free.

Still have tummyaches if I eat to many carbs or get glutened. Still using Miralax to undo my mistakes.

No longer needing naps on my days off, starting to clean closets and catch up on paperwork even though I'm working 10 hour days with 2 1/2 hours on the road to and from.

I'm lucky, I don't have any of the additional autoimmune disorders associated with celiacs. I think it might be because I've minimized the damage by going on and off the Atkins diet for years.

Enjoying the timelines.....

OptimisticMom42

[LDJofDenver]

I know how you're feeling, marthamom. Diagnosed last August and my 8 mo follow up bloodwork showed levels were coming down but were still not normal (and I'm pretty darn careful). My endoscopy at that same time showed sporadic villi, so that still not normal either, but regrowing. My GI doc said she was not concerned, that things were moving in the right direction so I was healing. It all depends on how old you are when diagnosed (I was 56) and how long you've had it. She (GI) said it could take a year (or more) to fully recover. Sigh.

I don't know how long I've had it. I believe most of my adult life for sure, but I can remember belly and intestinal problems when I was a kid, too. I'll never know for sure. I had it so long I had a whole host of problems, including migraines, roving pins and needles, balance problems (gluten ataxia), DH, osteopenia, and of course the stomach and intestinal woes. Over the years things got worse and worse, and my doctor was treating every symptom individually (a pill for this, a pill for that, an ointment for the skin, etc). He never put the whole picture together, in spite of the fact that I repeatedly told him over years that my adult son had been diagnosed with celiac disease. I finally changed doctors, and even though the new doc had ideas of his own and ran tests for those things (all of which came back normal), he finally ordered the blood tests for celiac disease, since I had a first-degree relative that had it. (hallelelujah)

Some stomach and intestinal issues and inflammation improved dramatically within first couple months. Here's the tough part, now that I have gluten out of my system I am ultra-mega-sensitive to it when I accidentally ingest any, even trace amounts (restaurant supposedly gluten free meal, friend's house that tried real hard, etc.). I immediately get all belly-swollen and grumbly gut, frequent bathroom trips, and an inside soreness in the gut that lasts a couple days till it settles down again.

Even though my bloodwork and intestinal biopsy are not yet "normal", I am happy to say that my neurological symptoms are pretty much all gone. I'd heard that those could take a really long time. Many other things are MUCH improved or gone altogether, and I have to say I look healthier.

It is definitely a journey.

[stillclueless]

I know how you're feeling, marthamom. Diagnosed last August and my 8 mo follow up bloodwork showed levels were coming down but were still not normal (and I'm pretty darn careful). My endoscopy at that same time showed sporadic villi, so that still not normal either, but regrowing. My GI doc said she was not concerned, that things were moving in the right direction so I was healing. It all depends on how old you are when diagnosed (I was 56) and how long you've had it. She (GI) said it could take a year (or more) to fully recover. Sigh.

I don't know how long I've had it. I believe most of my adult life for sure, but I can remember belly and intestinal problems when I was a kid, too. I'll never know for sure. I had it so long I had a whole host of problems, including migraines, roving pins and needles, balance problems (gluten ataxia), DH, osteopenia, and of course the stomach and intestinal woes. Over the years things got worse and worse, and my doctor was treating every symptom individually (a pill for this, a pill for that, an ointment for the skin, etc). He never put the whole picture together, in spite of the fact that I repeatedly told him over years that my adult son had been diagnosed with celiac disease. I finally changed doctors, and even though the new doc had ideas of his own and ran tests for those things (all of which came back normal), he finally ordered the blood tests for celiac disease, since I had a first-degree relative that had it. (hallelelujah)

Some stomach and intestinal issues and inflammation improved dramatically within first couple months. Here's the tough part, now that I have gluten out of my system I am ultra-mega-sensitive to it when I accidentally ingest any, even trace amounts (restaurant supposedly gluten free meal, friend's house that tried real hard, etc.). I immediately get all belly-swollen and grumbly gut, frequent bathroom trips, and an inside soreness in the gut that lasts a couple days till it settles down again.

Even though my bloodwork and intestinal biopsy are not yet "normal", I am happy to say that my neurological symptoms are pretty much all gone. I'd heard that those could take a really long time. Many other things are MUCH improved or gone altogether, and I have to say I look healthier.

It is definitely a journey.

I appreciate the time line from a "mature" female. I, too, was in my early 50's. I had 35 radiation treatments through my intestines 4 weeks after a hysterectomy which unexpectedly revealed a tumor. So although the surgery saved my life - the cancer would have been lethal had the surgery been delayed even 6 weeks - the trauma of the radiation apparently triggered the symptoms of celiac disease. It took a year to figure it out, and it was a rough year. I still don't have all my energy back, but I'm hoping that since my guts were microwaved and then assaulted by a "gentle" diet of Rice Krispies and Soy milk (the former with malt, the latter a trouble-maker until healed) that I will continue to improve with time. Treatments finished four years ago, I have been gluten-free for three. I, too, have become increasingly sensitive to cross-contamination, etc. but sure feel better when I know I'm not the only one with anxiety, aches, weakness and all the rest when I have been unwittingly glutenated. I had read somewhere that sometimes if one is diagnosed not until in the 60's, healing can take a very long time, if it happens at all. Mid-fifties? Can someone out there please let me know if this is as good as it gets? Or can I please expect some improvement? I can do anything anyone else can do in a day, but I can't do it two days in a row and a nap is absolutely essential on days off. I try not to be angry at the time I feel is being "wasted" because I simply can't do "stuff." Aaargh...

[FallenAngel8612]

Hi, my name is Michelle, and here's mine:

I have been having stomach issues for about a year now. I have always been somewhat lactose and fructose intolerant. I have frequent headaches and migraines. And, I've had depression of varying degrees.Those have been going on since I was 12, so 10 years now. When I started having the stomach issues including severe pain almost daily on 6-29-2008, I went to a doctor for it, they did stool and blood samples and I even had a colonoscopy, nothing came back. The symptoms lessened on their own, and I stopped going to the doctor around October or November of 2008, and decided to just deal with it. Because of the issues getting worse, I am at risk of losing my job unless it got taken care of, and I went to see a doctor Thursday of last week, and he immediately said that he thought I had Celiac. I mentioned my research on Crohns and IBS, and he said that rather than put me through a lot of tests, that I should go ahead and go on the gluten free diet for a week and see how I feel. After about two days, I felt weird and I had to stop in my tracks and assess how I was feeling. It has been so long since I have been pain free, that it took me a few seconds to realize that that's why I was feeling strange. I didn't have a headache that morning, like I usually do. I wasn't grumpy, grouchy, or snappy. And most amazingly, I wasn't in pain. Last night, after not being in pain or having any flare ups after 6 days, I cried because it was so strange to feel happy and normal again. I have been with my current boyfriend since August of 2008, and this is the first time he has seen me healthy and not in pain.

I realize the withdrawal part is probably going to come along, but I have friends that are coming up with recipes for me that are gluten free, and my boyfriend is trying to clear the house of all gluten containing foods as well, regardless of what his preferences are. My family is also being very helpful, since some of the gluten-free stuff is more expensive. They are scouting out foods that I like that are gluten-free. I was a very picky eater to begin with, so it's not as hard right now, but I know as long as I have good people around me, and helpful sites like this one, I can make it without too much of a hitch.

[knittygirl1014]

Wow, so many different stories! Glad someone mentioned drinking lots of water. I am so bad at this and have been trying to stay hydrated lately. Update for me- the last 4 months have been a little up and down. My joints still feel achy from time to time, and I've had to cut back on the gym-going, but I'm sure I'll work back up to it. I get really hungry still sometimes...so annoying.

I have been able to add back dairy, which is exciting! Let's hope I don't overdo it now. It is great to get to that first day when you look in the mirror and think "I don't look sick!" though!

[homemaker]

Well...Here is my story...

I am 55 years old...and I am six weeks gluten-free

and up to six weeks ago , I did not know what Celiac was..I had gone to a family cookout where I learned that my Sister had been Dx with Celiac...Well I started to do some research and then began to wonder...if I was not having many of the same symptoms...

Constipation I never complained about it because I thought is was normal to feel so crappy...I had been like that as a kid even

Gas

Bloating

Brain Fog...I thought that was just me

Tingling in Legs Feet

Ataxia...You don't want to see me walking down the sidewalk...you would think I was drunk LOL

So ...off the the Dr.s to ask for a Celiac Panel...He did not know even what test to give me...I thought to myself "oh my he is not the brightest crayon in the box" (I am changing Dr.s ASAP) Well my Doc looked up what tests to give me and they came back negative...

He basically told me to just go out and enjoy my bagels....

Now about one year before this....my sister was Dx with Osteoporosis very severe at 51, chronic migraines and chronic constipation and had to beg her Doc for the test ...He told her "you can't have Celiac you are too fat" Again not the brightest crayon in the box...

But her tests were off the charts at well over 100 ttg and a positive Endoscope.

So knowing what I learned about Celiac and what I saw my own sister go through......I went gluten-free as a trial and after one week the constipation, gas and bloating that I had suffered all my life had completely disappeared...today it is everyday like clockwork...

I still struggle with the other symptoms hopefully in time those will fade away....I am so HUNGRY and seem to crave all the good foods like my body is making up for lost time...

I plan on staying Gluten Free for life...I know I am Gluten Sensitive and the risk is far to great to play around with my health...

[clogger69]

After reading this discussion I decided I would try to write my story. I was diagnosed with Celiac disease from blood test and positive endoscopy in March 2009. I found this web site the day the nurse called from the doctors office to tell me I had Celiac disease. This was March 6, 2009. I had heard of Celiac, as a first cousin had been diagnosed a year before. All the questions I would have asked the first month, if I could have figured out how, have mostly been answered. I have read this web site almost daily for 8 months, as well as 6 books, all recommended on this site. Book #7, by Dr. Green is on order from my local library. My biggest concern is my age. I turned 69 this May and seem older than most people on this site. I had been very active. I performed in a clogging dance club for 20 years. We retired from performing in Dec. 2007, but still get together to dance. I also love to social dance, swing, waltz, polka, two step. This was where, I realize now, my first symptoms were being felt. I had extreme fatigue. Some of my fellow dancers were older than I was, in their 70ies and going like the energizer bunny, but not me! I was diagnosed in 2004 as being anemic but thought I was just not eating right and took iron supplements. What finally got me to a gastroenterologist was extreme fatigue, diarrhea, and I had lost 15lb. I have also had years of family stress, and two surgery's in last 5 years. I fell two years ago January on ice and broke my shoulder in four places. We have a lot of ice in Michigan in January. I discovered in 2001 that I have major osteoporosis and arthritis in lower back, neck and knees. Some of this is just going to be because of age.

When I first went gluten free in March, like many people on this site, I felt worse. What is the good news, is that I have started to feel better in the last two weeks. Also my antibodies have been steadily getting better and I have gained back the 15lb. I am not 100% by any means, but I do not feel sick and have more energy. I just pray it lasts and I am on my way up. When I keep reading that it takes longer if you are older, I was afraid that at my age I would never feel good again. I love reading the positive post, but they are all from younger people. I was also very lucky to find a support group just 4 miles from my house and enjoy that a lot.

I wish all of you, and myself good luck with our recovery.

Clogger69