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Is There An 'average' Recovery Time?

Rucko

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Rucko Apprentice
Rucko
Posted

I was finally diagnosed with celiac disease on Feb. 3rd, 2010. To sum up my sad story I started getting headaches at age 7, but it was attributed to 'being too emotional'. Many other symptoms came and went over my teen and young adult years but nothing really terrible; I had a fairly normal life. Then at age 27 I became pregnant with my second child and was so ill I could hardly get out of bed for months. I slowly recovered over the next four years but never to my previous level of health. However I was told many times that there was nothing wrong with me and that it was all in my head. Maybe it was, because headaches continued to be a major problem!

For the last 10 years I just seemed to be going downhill until I could no longer work (or do much of anything) as of last April. The headaches were more or less continuous, I had bone pain, itchy skin rashes, depression, insomnia, asthma, and a whole bunch of other symptoms that seemed minor but together were enough to drive anyone nuts. I was at last given the blood test for celiac in October 2009 and then had to wait almost 4 months for the biopsy. (I'm in Canada...)

So as far as I know I've been totally gluten free for 11 weeks now, except for the amitriptyline my doctor prescribed that is not gluten-free. I had some of the medication left over from a few years ago so took a total of 5 pills (25 MG each) before going to get the new prescription filled and finding out that amitriptyline isn't safe. Those 5 pills together are about the size of a large pea, but I guess there was enough gluten in them to give me a 3 day, very bad, continuous headache and a lovely, lingering rash on both elbows.

Anyway what I need to know is if there is an 'average' recovery time once gluten free? When I saw my doc two weeks ago, he said that I should have recovered after one month and so I MUST HAVE DECIDED NOT TO GET BETTER. (Yup, my husband was there and heard it too.) I'm no doctor but surely this is an individual thing? So I would love to know the amount of time some of you folks took to recover, especially if you did take more than one month.

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Jestgar Rising Star
Jestgar
Posted

your doc is a total ass. Some stuff took months to go away for me.

psawyer Proficient
psawyer
Posted

Recovery time varies greatly from person to person. Factors include the age of the person, the length of time from onset to diagnosis, and the degree of damage to the villi. In my own case, I noticed some improvement within a week, but symptoms continued for 3-4 months. My villi were severely damaged.

kayo Explorer
kayo
Posted

I second that sentiment, your doctor is an ass. :angry:

I've been gluten free since last summer and soy free since December and I'm still recovering and still trying to narrow down what other foods may be giving me trouble. While I feel so much better than I did before this is a process, an ebb and flow of progress and set backs.

Recovery time is so individual. There's another thread here that talks about how long you're down and out (binned I think was the term used) after getting glutened and you can see the responses vary person to person.

Do you have the option of seeing a different doctor? Perhaps one that specializes in celiac? Even if the wait time is long it will be worth it. I'm in the states and it took a good 5-6 months to see my new GI doc who specializes in celiac. It was well worth that wait to see someone is capable and qualified to validate my illness. You mean it's not all in my head? Wow! Thanks!

Lynayah Enthusiast
Lynayah
Posted

I am non-celiac gluten intolerant.

I started feeling better right away, but not all the way. I go to the University of Chicago Celiac Center, and they explained to me that it can take many, many months for my gliadin level to come down, especially at my age (56). It is normal for some people to take a year or two to heal.

My gliadin level remains high -- after going gluten-free for many weeks, it actually went UP instead of down, which is also normal for many.

I will get tested again in a month or so and we'll see how it goes.

Healing, of course, does NOT mean you can eat gluten again, as I'm sure you already know, but I am mentioning it because there are a lot of folks out there who have uneducated doctors who tell them that, if they're very strick, once they're healed they can try eating gluten again. Just last week I spoke to a new member of my GIG group who told me her doctor had given her that advice. Augh!

k2626 Explorer
k2626
Posted

My dr said it depends on the stage, and with that could take 1 to 4 yrs to "fully" recover.

psawyer Proficient
psawyer
Posted

My dr said it depends on the stage, and with that could take 1 to 4 yrs to "fully" recover.

I'm not a doctor, but I have read countless stories in the five years I've been on the board. I think this is accurate. Even if your symptoms seem to have completely disappeared, your body may still be healing hidden damage.

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Rucko Apprentice
Rucko
Posted
  • Author

I'm not a doctor, but I have read countless stories in the five years I've been on the board. I think this is accurate. Even if your symptoms seem to have completely disappeared, your body may still be healing hidden damage.

Thanks so much for the support and information. It's given me a lot to think about and a course of action; finding a more informed doctor!

chocolatequeen Newbie
chocolatequeen
Posted

I would agree with everyone else that it varies for each person. I have been gluten free for 7 months and still am far from feeling 100%. I have seen many improvements such as less headaches, getting through the day without anti-diarrhea pills, less nausea, etc. I recently eliminated dairy products and am still trying to figure out what other foods might be making me react. I think it takes a lot of trial and error to figure our new bodies out!

MoonWillow Newbie
MoonWillow
Posted

MoonWillow - Hi everyone! I had no idea that it could take so long to heal. I have been completely gluten-free for two months and I am still having symptoms. Mind you, I never got properly diagnosed, but I am 99.9% sure gluten has been my problem for years. I went gluten-free several years ago and felt great and much healthier than I had in a long time. Then 6 years ago, when I was pregnant with my son, I was so hungry all the time that I went back to eating bread products. What a mistake!!!! Even my son suffered and the doctors could not figure it out. I asked his specialist about gluten, but he brushed it off. I should have listened to my instincts. I only wish I had stayed off the gluten to begin with. Now the healing process is taking so long and I am still quite tired and malnourished. Some days are good though!! I am still in shock that it can take over a year to heal. Well, thanks to everyone for sharing your stories and informing me of the realities of this awful disease. BTW, my son has been gluten-free right along with me and he is doing great!!!

I would agree with everyone else that it varies for each person. I have been gluten free for 7 months and still am far from feeling 100%. I have seen many improvements such as less headaches, getting through the day without anti-diarrhea pills, less nausea, etc. I recently eliminated dairy products and am still trying to figure out what other foods might be making me react. I think it takes a lot of trial and error to figure our new bodies out!

Lynayah Enthusiast
Lynayah
Posted

I would agree with everyone else that it varies for each person. I have been gluten free for 7 months and still am far from feeling 100%. I have seen many improvements such as less headaches, getting through the day without anti-diarrhea pills, less nausea, etc. I recently eliminated dairy products and am still trying to figure out what other foods might be making me react. I think it takes a lot of trial and error to figure our new bodies out!

Yes, so true chocolatequeen.

For me, it has been a MAJOR process of elimination (no pun intended! Ha!). Every week, I make more changes. Recently, it was going to a grain-free dog food.

Anyway, every little bit helps, thank goodness . . . and every step in the right direction is a step in the right direction.

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    • knitty kitty
      Outgrow celiac?

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      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

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    • trents
      Outgrow celiac?

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      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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