Is It Normal To Have Flare Ups During The Early Stages Of Healing?

[HavaneseMom]

Hi Everyone,

 

I have been gluten free since I was diagnosed in October, so about 4 1/2 months now.

 

I have been experiencing something that seems really strange to me and I am wondering if any others have had this happen during their early stages of healing?

 

I will feel really great and have very minimal symptoms for a few weeks and think I am getting so much better. Then out of nowhere, I will feel miserable and have all of my pre-diagnosis symptoms for a couple of weeks. The times frames may vary, but basically I will have a stretch of time where I feel great, followed by a stretch of time where I feel horrible. This has been happening consistently since the very beginning of being gluten free.

 

I am strictly gluten free (as far as I know), so I don't suspect that I am getting glutened. I just feel terrible when I have these flare-ups though. I do also have GERD, but am taking Prilosec for that and don't think it would make me feel this bad, but maybe? I also just gave up dairy to see if that will help, although I wasn't eating much of it before.

 

I have read in the books etc., to allow 6 months to 2 years for full healing, so I'm not expecting to feel 100% yet. It is just so strange to me, and discouraging that I will feel great for a while and then go back to feeling how I did before I went gluten free.

 

Did anyone else have this back and forth pattern in beginning?

 

 

[NoGlutenCooties]

I've also been gluten free since early October.  I haven't experienced what you descibe but I know from reading accounts from others that this is very common.  Over time you'll find you have more good days than bad - and then eventually you'll realize you only have bad days when you've actually been glutened.  I don't know the reason for this, but I suspect it is because it takes so long to get rid of the antibodies.  I read somewhere that they have a 3 - 4 month half-life.  So after 4 months you have about 1/2 the number of antibodies that you did when you went gluten-free.  The villi inflammation/damage can come and go in Celiac people before they go gluten-free so it seems reasonable to me that it would continue to come and go until all of the antibodies are out of your system.  And if the villi inflammation can come and go then it follows that your symptoms would come and go too.  (Just theory on my part, but it makes sense to me.)

[HavaneseMom]

I've also been gluten free since early October.  I haven't experienced what you descibe but I know from reading accounts from others that this is very common.  Over time you'll find you have more good days than bad - and then eventually you'll realize you only have bad days when you've actually been glutened.  I don't know the reason for this, but I suspect it is because it takes so long to get rid of the antibodies.  I read somewhere that they have a 3 - 4 month half-life.  So after 4 months you have about 1/2 the number of antibodies that you did when you went gluten-free.  The villi inflammation/damage can come and go in Celiac people before they go gluten-free so it seems reasonable to me that it would continue to come and go until all of the antibodies are out of your system.  And if the villi inflammation can come and go then it follows that your symptoms would come and go too.  (Just theory on my part, but it makes sense to me.)

Thank you for all of this information. I didn't know about the antibody half life and inflammation.

What you are saying makes total sense and would explain the feeling good for a while, then bad for a while cycles I seem to be having.

I just get so excited when I have the stretches of time when I feel so great. Then when I start to feel sick again I feel like I have done something wrong and try to figure it out, but never can. It sounds like in time, once the antibodies taper out of my system, I should stop having those bad periods of time. I can't wait!

Thanks again, this was very helpful.

[moosemalibu]

Yes - this happens to me. And I always feel like I get glutened via cross contamination. I also was dx'd in Oct '13.

[1desperateladysaved]

I certainly had some surprising downs on my way.  I do think some are from cross contamination, but there were several for me that I never identified.  I found that my lowest lows were often followed by my highest highs, so one never knows what will happen next.  I do guess that sometimes the body is working on healing and it is awesome to reach a new high!  Hang in there and keep walking!

 

D

[nvsmom]

Happens to me too. Early on I did gluten myself a few times and I could tell when I had due to certain symptoms. I do get flare-ups of other symptoms (headaches, fatigue, arthritis) that don't seem to have anything to do with getting glutened but i believe are linked to celiac disease as they get less frequent and severe as time goes on.

 

Two steps forward, one step back.  It's still forward though.  

[HavaneseMom]

It sounds like others out there have the same thing happen as me too. I hope it is just part of the natural healing process and I am not getting glutened from cross contamination. I am so careful, but I know it will never be completely avoidable.

 

1deperateladysaved, As time goes on I am experiencing exactly what you said, I am having the highest highs, followed by the lowest lows. I can't wait for those lows to disappear, because the highs are wonderful!

 

I just want to say that this community is amazing. It is so comforting to know that their are others out there who have gone through the same things and are so generous to reach out with answers that even doctors can't give and provide support. I'm so thankful I found this forum

[NoGlutenCooties]

Keep in mind too that Celiac causes malabsorption.  So your body has been going without enough nutrients for a long time.  It's not just about the villi damage and getting rid of all the pesky antibodies.  Your body is also replenishing vidal nutrients and repairing whatever damage/weaknesses have been caused by being low in certain nutrients.  So your body is doing a lot right now.  Getting enough healthy food, water, and plenty of rest can go a long way towards speeding up the healing process.  Because even if you aren't feeling it, you body is scurrying around all over the place healing and replenishing and regenerating and cleaning out.

[GFinDC]

Hi HM,

 

That's pretty typical symptoms I think, for many people.  Eating a simple, whole foods diet is a good way to avoid cc and gluten.  After you have healed up and are doing well, branching out and adding some processed gluten-free foods is fine.  The amount of gluten it takes to cause a reaction or flareup of symptoms is very low.  Plus our guts need time to heal and recover from the damage, and also to establish a new healthy gut bacterial flora.  Try reading through the tips below.  Are you following all of them?  You don't have to of course, but they may help you recover faster if you do follow them.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

[HavaneseMom]

Thanks for all of the advice!

 

GFinDC, I have seen some of those things mentioned, but not put together nicely in a list. Thanks!

I am a horrible cook, so I do eat a lot of Amy's gluten free meals, but I will try my hardest to eat less processed foods...and the sugar.

It's hard to give all of these things up, but I know it is for the best

[GFinDC]

Thanks for all of the advice!

 

GFinDC, I have seen some of those things mentioned, but not put together nicely in a list. Thanks!

I am a horrible cook, so I do eat a lot of Amy's gluten free meals, but I will try my hardest to eat less processed foods...and the sugar.

It's hard to give all of these things up, but I know it is for the best

 

Hmm, well, it's hard to be sick too!

 

Yeah, the list format makes it easy to check and verify.  That's why I like it.

 

Some people have reported problems when eating Amy's meals.  I gave them up years ago after I had reactions to them and haven't tried them since.  Maybe they are ok now, maybe they aren't, I am not sure.  But I get along just fine without them so I'm not in a hurry to try them soon.  You can use the search tool for thread's on "Amy's" and find more info.

 

I am not real thrilled about spending a lot of time cooking myself.  I don't hate it, but just don't want to spend time on it that isn't needed.  Being a great cook tho depends on having great tools.  A crock pot, a pressure cooker, and a microwave are the essentials.  With those you can cook lots of meals without a whole lot of time staring at the food cooking.  Crock pot recipes tend to turn out pretty good with little effort.  You just need to plan ahead and start them hours ahead of the meal.  A pressure cooker is also pretty easy.  They can cook things quickly with little chance of burning, and the steam/water holds in nutrients.  And if you forget it long enuff you will eventually have soup!  Or even longer a really badly burned pressure cooker.  But there should be a soup stage in-between there as long as you added enuff water and kept the heat at a reasonable level.

 

I tend to cook large amounts of food at once and eat over the course of a week, or freeze some.  It's simpler for me and I don't mind eating a somewhat repetitive diet.  Plus I don't get sick very often.   Unless I decide to wander off into some processed food stuff that I haven't tried before.  But my diet is stable enuff that I know if I do that and get sick, that it is that new food item that made me sick.  There's no big mystery to it anymore.

 

You could also try searching the forum for "snack ideas".  Those threads are usually sources of easy to fix foods. 

 

Some others are:

 

Easy yummy bread in minutes

https://www.celiac.com/forums/topic/56641-easy-yummy-bread-in-minutes/

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes

https://www.celiac.com/forums/topic/97786-thread-for-gluten-free-dairy-soy-corn-and-nightshade-free-recipes/

Super Easy Meal Ideas Anyone?

https://www.celiac.com/forums/topic/97027-super-easy-meal-ideas-anyone/

Good Gluten Free Meals Prepared Using A Microwave?

https://www.celiac.com/forums/topic/102685-good-gluten-free-meals-prepared-using-a-microwave/#entry885634

[HavaneseMom]

Thanks GFinDC!

When I got my diagnosis, I thought all I would have to give up was gluten and I would miraculously recover. It's been a surprise to find out that there is more to it than that for some of us. I guess when a persons digestive system gets damaged over and over again for years, it's hard to digest lots of things. I had no idea about the Amy's meals! I will keep an eye on that for sure. I have started to cook a little over the past couple of weeks and will take your suggestions and use them. The links are great too! Thanks so much

[West Coast Canuck]

Interesting info. to hear. I was diagnosed and went G.F. right after New Year's. Gradually things are improving, though the gut is really sensitive, as I get a moderate throbbing reaction every few days which makes it hard to sleep for a night or two. Then a few good days, then the cycle repeats itself, though overall things are slowly improving. Also have noticed a sensitivity to second hand smoke which I didn't have before. In fact, I used to have a couple cigarillos most weekends, up until New Years. Needless to say, no more until I'm healed. Guess it is all part of the healing process.

[GFinDC]

@HavaneseMom You are very welcome HM.  There are several other threads on meal ideas, some very long and full of things to cook.  Yep, gluten might be all there is too it if you were diagnosed right away and went gluten-free right then.  But over time our irritated guts tend to start reacting to other foods too.  It's not for sure those other food reactions are permanent though.  The usual suggestion is to avoid other problem foods for 6 months and then try them again.  Sometimes the body will be be able to tolerate them after a period of absence.  Sometimes not though.  We are all individual and our bodies react variably.

 

@WestCostCanuck

Hi HWC, Yep, the beginning of the gluten-free diet can be a rough go.  A rollercoaster might be a good analogy.  It can be up and down for a while, sometimes months.  That's why I suggest people do a simple whole foods diet for 6 months.  The healing process can be rough enough as it is, so I figure giving the gut a more natural, easier to digest diet is a good thing.  Avoiding carbs and sugars helps keep down bloating.   Bacteria in our damaged guts tend to get out of whack easily and create lots of bloating.  Inflating a 22 foot long section of inflamed, irritated gut can be a bit painful.  I had gut spasms for a while after going gluten-free.  My chronic always there gut pain went away after 9 months.  It was replaced by sporadic gut pain etc but at least it was not constant.  But some people have much faster recovery and symptom relief too.  It's the old variable thing again.  We can't know how our own bodies are going to react for sure by comparing to other people's  There are 300 symptoms of celiac disease and hopefully nobody has them all.

 

Celiac is auto-immune.  So the immune system is affected and that can mean other changes in the immune system.  I had pretty severe hayfever for years, which went away after going gluten-free.  Supposedly celiac wouldn't directly affect IgE reactions but it did for me.  That could be for you too, suddenly reacting to cigar smoke.