Recently Diagnosed Celiac Wondering About Recovery Time?

[Aerin328]

After being extremely sick for three months and missing almost a month of work from bed-imprisoning weakness and digestive issues, I was finally diagnosed with Celiac's disease 13 days ago. I immediately went on an aggressive gluten-free diet (I had already been on a "wheat-free" diet for 2-3 weeks prior, and I did improve some, but it was definitely not strictly gluten-free until 13 days ago). I have accidentally glutenized myself twice in the past two weeks (cursed rice pilof 11 days ago, and then Rolaids of all things 7 days ago). I believe I have been completely gluten-free for one week now (and "mostly" gluten free for two weeks). I am being VERY aggressive in rooting this stuff out of ALL sources of my diet, I really don't think it's sneaking in anywhere anymore.

I have read SOOO many different things regarding what kind of recovery time I can expect. I am a LOT better than I used to be, but I still suffer from fatigue, malaise, feel like I have a fever at times (but I don't), and I have mild stomach pains (they used to be TERRIBLE a few weeks ago). What should I expect in the way of recovery time??

How long did it take you to feel better after cutting gluten out completely?

I'm still new to this Celiac thing and I am just hoping to see a light at the end of the tunnel...

Thank you for the response!!

[CarlaB]

Okay, I read through your post seriously, but got to "perception is reality" and started cracking up because my husband say that all the time!!!

I've been gluten-free for 7 months. Like you, I was wheat free for years prior to being gluten-free, but this affected my testing especially since I went gluten-free for a few months before the tests, so I went to Enterolab. They found I was also casein sensitive, but I was feeling so much better off gluten, that I went into denial over the casein. About a month ago I eliminated the casein as well.

Sorry no straight answer, but the casein gives me the same symptoms as the gluten. I still mostly feel pretty good. I got glutened at a restaurant last Friday, so I'm dragging this week, but normally I feel pretty good. I have good days and bad days, but my bad days are better than my good days were before being gluten-free. I feel my energy returning, but I still have a ways to go.

It varies. I've heard that the average time for the intestine to heal is two years. Not that you'll feel bad that entire time ...

LOL now I see it's "perspective", my hubby says "perception"

[queenofhearts]

I've heard that recovery time depends greatly on how long one has gone undiagnosed. The more damage to the villi, deficiency issues, &c., the more the body has to do to heal. You have barely begun-- not to discourage you, but it will take a while to achieve optimum health. The good news is that if you are careful & patient, you will continue to feel better & better...

Welcome to the board... this is a great place to come if you feel your resolve wavering or your patience strained-- lots of encouragement along with vital information.

If I were you I would definitely take a look at Nini's newbie kit-- it will help you avoid some common hidden sources of gluten that can hinder full recovery.

Leah

Nini's address is Open Original Shared Link The newbie link is at the bottom of the page.

[Ursa Major]

Hi Aerin, and welcome to this board. Well, the recovery time varies from person to person. Seeing that you're young (if that is you in your avatar), and were really ill for only three months, you'll likely recover fully, and faster than people diagnosed at a more advanced age.

You might feel fine after six months, who knows. But it won't be instant. Also, most celiacs are initially intolerant to dairy (some can have it again after the villi heal), so you may want to try eliminating dairy as well as gluten for the time being.

[Sarah8793]

I remember when I had only been gluten free for 2 weeks and I really really wanted to see some improvement. At that point I still felt pretty much the same. I have been gluten free now for just over 2 months, and for me it was right at the 2 month mark that something changed. It was subtle, but I began to get a little more energy. Just enough to get a little bit of hope. I can see the light at the end of the tunnel now, but I am definitely not completely healed or symptom free.

Sarah

[Aerin328]

Thanks to all who have taken the time to respond, and so quickly. This site is a blessing! Thank you for the encouragement. It is really wonderful to be able to find people who understand the depth, difficulty, and complexity of this illness.

In response to Ursula's comment, yes I am still young, I'm 26 years old... I can imagine now what even 26 years of eating gluten has had a chance to do to my body. I am glad they've caught this now, and I can begin the road to healing, no matter how long it may be.

Patience and perseverance shall be our mantra. And if nothing else, all this will give renewed perspective.

-Christian (Aerin328)

[Ursa Major]

Christian, have you been tested for deficiencies? Most people with celiac disease are deficient in several vitamins, as well as iron and minerals, because of malabsorption due to damaged villi.

You might want to get tested for your levels of vitamin D, potassium, vitamin K, ferretin (iron), calcium and magnesium and vitamin B12. I hope I didn't forget any, but those are very important. Without sufficient vitamin D your body can't absorb calcium and magnesium, which will in turn cause osteoporosis. Oh, and you should think of having your bone density checked. Many celiacs will have osteoporosis (or osteopenia, the precursor to osteoporosis) in their twenties or thirties already.

At your age that can still be reversed if caught early, and if you supplement. And of course, the point of testing all these things is, that you know what you need to supplement with.

By the way, glucosamine sulfate is not just good for your joints, but will also help your intestines to heal faster. It is a good thing to supplement with it for a while.

Also, make sure you eliminate gluten from your personal care products. I had to change all my brands of shampoo, conditioner, soap, lotion, chapstick ect., because a lot of them had wheat germ oil, oat bran or barley extract in them (I used to like all natural products). While you can get them into your mouth via your hands, I also used to get skin reactions to them.

If you eat gluten-free bread, you will need a new toaster, as you can't clean your old one well enough to avoid cross contamination. The same goes for wooden cutting boards, wooden cooking spoons, plastic colanders and scratched non-stick cookware.

Okay, I think that should be enough for now, I'll stop before you get totally overwhelmed!

[kbtoyssni]

Welcome! I'm 24 and have been gluten-free for 10 months. I had a lot more energy after a few weeks, but it took me probably eight months to feel like I was living my life 100% again. I had lost a lot of strength from being nearly bed-ridden for a year, so I think the eight months was a combination of recovering and getting my strength back. I was able to coach gymnastics after two months gluten-free. I think it was a gradual getting better and one day I woke up and realized I felt better than I had in years!

It's great to hear that you're being so aggressive with your recovery. It took me months to find all the hidden gluten in my house so keep looking. I even found some gluten shampoo at home a few weeks ago!

[Aerin328]

Ursula, thanks for the advice! I will look into getting some glucosamine sulfate and call my doctor about getting those vitamin and mineral levels checked. I just checked my personal care products, they appear to be OK... I hadn't even thought about the toaster... lol

Kbtoyssni, thank you for advising your own timeline. At least it gives an idea of the possibilities.

I'm only now starting to take all this in... it's starting to show up in my dreams. Had a dream last night I consumed two juicy lovely McDonalds burgers, only to look down and think, "WHAT AM I DOING!?", at which point I vomited in my dream. I suppose that's a sign my subconscious is getting it. Now it's just time for my conscious mind to deal with it. Ugh, it's overwhelming.

[Ursa Major]

Ah, those fun dreams! I've had dreams where I am eating a cookie, and then think, "Oh no, I can't eat those, I just made myself sick!" It's really weird.

You'll be okay, especially because you're so determined to do it right, rather than trying to justify 'little' slips, like some people do at the beginning.

[CarlaB]

Funny, I usually know when I'm dreaming, so if I ate something glutenous in my dream, I would probably say, "Wow, this is great and I won't get sick!!"

[Aerin328]

I usually know I'm dreaming as well! But I guess my subconscious had a message. (Clearly, you will never eat a McDonalds hamburger again). At first that statement sounds like a great loss... but in fact, being FORCED to not eat McDonalds (as well as other crap) or other sources of gluten is a Blessing.

[Luvs to Scrap]

Christian,

My husband has been gluten-free since last October. He started gradually feeling better after a couple months and really noticed a difference after 6 months. (His main symptom was D) Just the other day he commented how nice it is to be feeling better and to only have occasional bouts of D. He was so worried when he had to fly that he would get sick so he wouldn't eat anything til he arrived. It is nice that he doesn't have to go on self imposed fasts when we are traveling.

My son started the gluten-free diet in June and he now has some forms stools but has a long way to go. He is 3 so he accidently gets gluten once in awhile. (At a church picnic I had brought some gluten-free cookies for him and he didn't want a cookie. Later he saw other kids eating oreos and helped himself. Jason didn't catch him until he was half done with one so that will set him back for awhile!)

Hopefully you will be one of those lucky ones who sees progress fast. Kendra

[oceangirl]

Christian,

My husband has been gluten-free since last October. He started gradually feeling better after a couple months and really noticed a difference after 6 months. (His main symptom was D) Just the other day he commented how nice it is to be feeling better and to only have occasional bouts of D. He was so worried when he had to fly that he would get sick so he wouldn't eat anything til he arrived. It is nice that he doesn't have to go on self imposed fasts when we are traveling.

My son started the gluten-free diet in June and he now has some forms stools but has a long way to go. He is 3 so he accidently gets gluten once in awhile. (At a church picnic I had brought some gluten-free cookies for him and he didn't want a cookie. Later he saw other kids eating oreos and helped himself. Jason didn't catch him until he was half done with one so that will set him back for awhile!)

Hopefully you will be one of those lucky ones who sees progress fast. Kendra

Christian,

I am officially about 4 months gluten-free, (MOSTLY gluten-free two months before that), and still swing with all the symptoms. For me those are primarily gastrointestinal. Like you, I am fierce about the diet and have been very frustrated at feeling "glutened" quite a number of times. It does seem like I also became sensitive to many other things as well; consequently, I've eradicated corn, soy and dairy for the time being. This seems to help. (Except when trying to find things to eat!) I make ALL my own food and my family is not bringing bread in the house presently because there's been a correlation to my feeling sick when they do. This board has taught me I'm not alone and that it is a very tricky process for everyone. Remain aggressive and you will soon have more good days than bad, I hope. Heal on!

lisa

[CarlaB]

I usually know I'm dreaming as well! But I guess my subconscious had a message. (Clearly, you will never eat a McDonalds hamburger again). At first that statement sounds like a great loss... but in fact, being FORCED to not eat McDonalds (as well as other crap) or other sources of gluten is a Blessing.

This is so true. Someone I was eating with the other day and who has a close friend who's celiac said that it must be a really tough diagnosis. I said, not really. I have to eat only meat, chicken, fish, eggs, fruits, and veggies -- freshly cooked and seasoned with natural herbs. It's only being "sentenced' to eating the way everyone should eat anyway. Also, all the garbage is available, only instead of being cheaper than the good natural stuff, it's more expensive, so we realize it's a treat!

Now, off to my weekly treat -- a kinnikinnick donut and a cup of coffee!!!

[Aerin328]

>It's only being "sentenced' to eating the way everyone should eat anyway.

So true! My girlfriend also has a wheat-intolerance and we are both laughing at this sentence.

What is a kinnikinnick donut? I'm dying for a donut ... does it taste anything like a "standard" donut?

Also, you are drinking coffee I see -- have you had any trouble on caffiene?? It seems the couple times I had any my stomach went crazy, terrible pain, etc. Is it perhaps just b/c the gut is still sensitive?

Thanks to ALL who have responded, I appreciate hearing the different perspectives and experiences regarding recovery time. I am beginning to understand just how long of a process this will be ! (Now if only my FAMILY would understand too!)

[CarlaB]

>It's only being "sentenced' to eating the way everyone should eat anyway.

So true! My girlfriend also has a wheat-intolerance and we are both laughing at this sentence.

What is a kinnikinnick donut? I'm dying for a donut ... does it taste anything like a "standard" donut?

Also, you are drinking coffee I see -- have you had any trouble on caffiene?? It seems the couple times I had any my stomach went crazy, terrible pain, etc. Is it perhaps just b/c the gut is still sensitive?

Thanks to ALL who have responded, I appreciate hearing the different perspectives and experiences regarding recovery time. I am beginning to understand just how long of a process this will be ! (Now if only my FAMILY would understand too!)

I drink coffee once a week ... the caffeine does not bother my stomach, but the cream did before I removed dairy. It's normal for people to have a lactose intolerance when first diagnosed, so you could test your coffee with soy creamer and see if you are less sensitive. For me, I'm casein intolerant, so it's a permanent problem. The lactose intolerance can heal once your intestine does.

Kinnikinnick has great donuts!! I buy them at Wild Oats. It's the brand name. I try to avoid wheat replacement products, but I do have a treat or two each week.

[Stevee]

Hey Aerin, your doing good. When I was diagnossed I was a walking skeleton. Its been ten years. It took me about 5 to get back coffee. And the fevers, they just stopped 6 months ago. My only advice is avoid to much sugar, your gonna crave it like crazy. If you have it, stick with natural sugar not the processed stuff. I also had real trouble with beef after last years FDA new rules. I now stick with grass fed beef. And make sure you call the manufactuer of any rice or soy milks. Some are ground up with barly. Look at it this way, god has decided your gonna be a health nut. lol

[Aerin328]

Hey Aerin, your doing good. When I was diagnossed I was a walking skeleton. Its been ten years. It took me about 5 to get back coffee. And the fevers, they just stopped 6 months ago. My only advice is avoid to much sugar, your gonna crave it like crazy. If you have it, stick with natural sugar not the processed stuff. I also had real trouble with beef after last years FDA new rules. I now stick with grass fed beef. And make sure you call the manufactuer of any rice or soy milks. Some are ground up with barly. Look at it this way, god has decided your gonna be a health nut. lol

Steve, how long did it take from when you started going gluten-free to when the fever-like symptoms stopped?

Also, what do you mean with beef "after last year's FDA new rules" ??

[kbtoyssni]

>It's only being "sentenced' to eating the way everyone should eat anyway.

So true! My girlfriend also has a wheat-intolerance and we are both laughing at this sentence.

What is a kinnikinnick donut? I'm dying for a donut ... does it taste anything like a "standard" donut?

Also, you are drinking coffee I see -- have you had any trouble on caffiene?? It seems the couple times I had any my stomach went crazy, terrible pain, etc. Is it perhaps just b/c the gut is still sensitive?

Thanks to ALL who have responded, I appreciate hearing the different perspectives and experiences regarding recovery time. I am beginning to understand just how long of a process this will be ! (Now if only my FAMILY would understand too!)

I LOVE kinnikinnick-brand donuts! They are delicious. I buy mine at the local health food store, so I bet you'd be able to find them.

I used to have problems with the caffiene in coffee so I switched to decaf. My stomach would hurt so badly. I haven't tried drinking regular again since I went gluten-free, but maybe I'd be alright now.

[DrMom]

Carla,

Where do you get your kinnikinnick donuts? I don't have much available in my small town, but could make a road trip for some if they are "good". I only get my gluten-free food at Kroger's and they don't carry that brand.

BTW, I 'll be right over if the coffee is hot..

DrMom