Good Days & Bad Days -- Is This Normal?

[BabsV]

So, I'm almost 2 months into the gluten free diet.

Before my Celiac diagnosis every day was a bad day in terms of pain, fatigue and brain fog. After a few weeks I started having some good days in between the bad days, then it became every other day being a good day...now sometimes I have 2-3 in a row before having a bad day (although to be fair, a bad day now isn't nearly as bad as it was before.) Overall I am improving...not as quickly as I'd like but then I'm not always one with a lot of patience.

Am I correct to assume the the healing process is one of those "two steps forward, one step back" type of deals? I can have a 'bad' day yet I haven't eaten anything different that I have on the good days.

I am sticking to a very unexciting menu of plain chicken, turkey, a little fish, lots of rice and potatoes, some cooked vegetables (cauliflower and broccoli mostly), some fruits (bananas, cooked apples, cooked pears). I was having a problem with dairy so cut that out. Anything too tough (corn, raw apples) was setting me off -- I figured that out and eliminated. I'm avoiding replacement gluten-free foods for the time being.

I've replaced pots, pans, strainers, anything wooden. Even bought a new crock pot! I cleaned out the kitchen and am manic about washing my hands and wiping down counters as my husband has a few gluten containing items in one special cabinet. I checked the medicines I take for gluten and make my dear husband brush his teeth before approaching me. I really don't think it is cross-contamination...

Just need a little confirmation I haven't missed something and this is 'normal' or perhaps I should say it is a possible version of 'normal'! Thanks.

[IrishHeart]

Sure sounds as if you are doing everything "right"

It is indeed an up- and -down road. Like you, I posted this same question about 3 months into healing and was reassured by the gang on here that healing is not a straight path and that some days are better than others and that it takes time. You are healing a large area of the small intestine and your entire digestive tract, restoring vitamins and minerals and your body is essentially "re-booting" itself.

Everyone heals at different rates and there is no set timetable. Do not be discouraged.

Cross-contamination is always a consideration, but many people live with gluten-eaters and do just fine. Sounds as if you and hubby take all the necessary precautions!

Giving up the dairy is a good idea as it helps with healing. Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi. When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.

I am 9 months gluten-free/ post-diagnosis and I have just started to tolerate small amounts of cheese (yaaay! )but the first few months were really rocky for me and I did not see much improvement right away and I had to convince myself to be patient over and over again. You, however, may have a much faster recovery than I --and it sounds as if you are well on your way!!

So, hang in there!!--soon you will have more "good days" than bad. You're doing everything you can to get well. Yes, that patience thing is tricky-- and I completely relate to that frustration (I am always thinking, c'mon, hurry up already!! I want to feel GREAT!) --but you are already showing major signs of healing and that is what matters most!

Best wishes!

[Jenniferxgfx]

I'm 3 months in and definitely feel like I'm on a recovery roller coaster too. Overall I'm improving but I've had a lot of backwards slides too. I think I'm so excited to have my head back that I end up overdoing it. Plus I discover all kinds of sources of cc!

It takes awhile to recover all those lost nutrients (don't forget your leafy greens!), so even though we're not actively being poisoned by gluten any more, it takes time to recover from the long term gluten exposure AND to fix all those nutritional deficiencies.

We just have to hang in there

[pricklypear1971]

Yes. I was just telling my doctor how great I feel..

Around noon yesterday I started getting a headache....grew into a migraine....finally took Tylenol at 5:30 am....my period started....so now I am thinking it's hormonal... Stoll have a headache....Ugh.

Yeah. Some days you slide back a bit. Bit overall it's much much better.

[BabsV]

Thanks everyone. It is good to hear others have had similar experiences. Just have to be more patient. Ha! That's apparently going to be the BIG challenge for me right now!

[IrishHeart]

Thanks everyone. It is good to hear others have had similar experiences. Just have to be more patient. Ha! That's apparently going to be the BIG challenge for me right now!

Yes, it is difficult to be patient (I sooooo "get that" ), however, the reality is that depending on how long you have been ill, the longer it takes for those villi to heal and for the malabsorption to stop and for your body to "right itself'.

Be patient with yourself, stick to the diet, stay hydrated, take your vitamins, get a lot of rest and if you are able, exercise and find a way to relax and release the stress. You've had your vitamin levels checked, right? Take probiotics? A toxic body takes some time to heal.

If you get frustrated, post again or feel free to PM me and I'll listen to you vent and cheer you on

No one "gets it" like another who walks this path.

Best wishes!

[T.H.]

It can definitely be a forward and back progress on getting better, yeah. Some people just continue slowly healing.

But considering how super gluten free you're being, I thought I'd ask a couple things. With all the effort you've gone to, so early, it seems like you're really motivated to get better ASAP!

So, questions - on your bad days, what symptoms does it involve? Are all the symptoms there: the brain fog, the pain, the fatigue? Or are only some of the previous symptoms present? You mentioned having trouble with harsh foods, like apples/corn. Do they cause gut issues, then? Is that typically involved on your bad days as well, or no?

Do you keep a food journal during all of this? If so, how detailed?

I know of a number of people where it took many months to heal. The gut issues could be very slow to recover, and they seemed to go back and forth, where foods could set off pain and suffering because the gut was just more sensitive than it should be, inflamed, etc....

Also, I know people who took many months to resolve the brain fog completely. But I believe that for most of the brain fog crowd, it was a slow resolution of the fog rather than a back and forth problem. I wouldn't swear to that - hoping someone else here who had that issue for an extended time might be willing to step in and correct me if I'm wrong here! But it seemed like the brain fog didn't recover and then relapse in a pattern like you're describing. So if that's one of the symptoms that pops up on the bad days, you may want to start a food journal and see if you can find any connection to your reactions and the foods you eat/places you are going(if you haven't already. :-) ).

So, if you feel like you've got the energy, and interest, here's some weird extras you can keep track of, on a food journal, that might show some different issues:

- amounts you are eating. Some celiacs develop mild allergies after going gluten free, and many of these cause gastro distress, a brain-fog-like spaciness, or aches and pains and other issues. No hives and itching. Because these are mild, they can be affected by how MUCH you eat. A little may be fine, but more can set it off. The threshold amount might be over a few hours, or even a couple days.

- how things were cooked. Again, for mild food allergies, cooking often denatures the protein to the point where the body won't react, although it might react to the raw food. This rarely applies to severe allergies: those foods tend to have more stable or complicated proteins, I understand.

- brand names. Sometimes, we can react to contaminants, or gluten cc, or oat cc, if you are an oat sensitive celiac. For example, a number of oat sensitive celiacs seem to have trouble with Lundberg rice. They were the company I went to first, since they had the nice, big Gluten free logo on them, but they grow oats as their cover crop and I feel pretty crummy after eating their rice, it turns out.

- all ingredients inside other ingredients. An example: salt. I would just write salt in my food journal. Turns out, most salt has anti-caking agents added. Iodized salt also has corn derivatives added to stabilize the iodine (for corn allergic/intolerant folks, this can be an issue, obviously).

- where you are when you react, and where you've just been. Yeah, this sounds weird, but seriously, it can sometimes be important. The allergies that can show up after going gluten-free don't always have to be food related. Some hay fever/environmental allergies can pop up, too, and cause brain fog issues, etc... For me, coffee is one of 'em, even if I inhale it. I also have weird trouble with my hay fever, so in allergy season, when I would drive on this one route through a big field of my hay fever allergens, it would make me feel terrible. Like I said - weird, but can be relevant.

If things are still not resolving after a while, here, you might also want to check out things like: fructose malabsorption, salicylate sensitivity, and histamine sensitivity. These often involve a range for foods that can cause gastro trouble and other problems. There are safe diets for each condition that are pretty easy to find on the web.

Also another possibility, if this keeps on going for a few months and stops improving, is to check out super-sensitivity to gluten. There's a super-sensitive forum further down on the forum. I ended up having to check out that, too.

Wishing you the best of luck! So many people here have been down this road too, just trying to figure out how long it's going to take, and what the heck is going on. Lots of information from us all here that can hopefully help you out!

[BabsV]

Be patient with yourself, stick to the diet, stay hydrated, take your vitamins, get a lot of rest and if you are able, exercise and find a way to relax and release the stress. You've had your vitamin levels checked, right? Take probiotics? A toxic body takes some time to heal.

Thanks again for your kind words, it really does help.

I'm sticking to the diet, staying hydrated, taking my vitamins (gluten free ones!), resting as much as needed and taking the dog out every day for at least a 45 minute walk. Also working on meditation and considering CBT for dealing with the continuing pain issues -- want to give the diet a bit more time to work before starting up with a whole new set of doctor appointments! Have had a battery of blood tests but need to go back and review (I don't think the doc checked B12 levels and that seems to be mentioned often in the forums.) I've ordered some gluten-free probiotics which should arrive soon -- this whole Celiac adventure is increased/exacerbated by me being an American living in Poland...had repeat blood tests and biopsy to confirm diagnosis while back in the United States in August for a short visit but now have several more months before returning to the U.S. to live. I'm still working on figuring out labels in Polish not to mention EU labeling requirements vs. Polish labeling requirements (items that aren't exported often have NO allergen labeling of any kind?!?!)

I figure it took months to feel as bad as I did prior to diagnosis so it will take months to get back to better health. I just grumble about it sometimes...

[BabsV]

So, questions - on your bad days, what symptoms does it involve? Are all the symptoms there: the brain fog, the pain, the fatigue? Or are only some of the previous symptoms present? You mentioned having trouble with harsh foods, like apples/corn. Do they cause gut issues, then? Is that typically involved on your bad days as well, or no?

Do you keep a food journal during all of this? If so, how detailed?

Hmmm, I always have the fatigue and brain fog (which honestly have improved a bit since starting the diet...) but the pain is the main issue that seems to get better or worse depending on the day. It isn't nearly as debilitating/exhausting as it was prior to diagnosis but it is still present and impacts my life to a bigger extent. On the days I have the abdominal pain I also sometimes have reflux-like symptoms but when I was scoped the doctor said my stomach & esophagus are healthy with no indication of any damage from reflux. She figured the reflux-like pains were related to the Celiac Disease...and said as I healed they should *hopefully* go away.

I keep a food diary but it isn't very detailed. I think I'll pay better attention and see if I can connect any other dots.

Thank you so much for these suggestions. I am highly motivated to be in better health -- I felt so terrible prior to diagnosis that there were times that I honestly didn't think I'd make it through the day! I NEVER want to go back to that place if there is anything I can do to avoid it. Seriously.

[BabsV]

So, questions - on your bad days, what symptoms does it involve? Are all the symptoms there: the brain fog, the pain, the fatigue? Or are only some of the previous symptoms present? You mentioned having trouble with harsh foods, like apples/corn. Do they cause gut issues, then? Is that typically involved on your bad days as well, or no?

Oops, forgot to say that the raw apples/corn/beans cause much more pain plus lots of noisy gut (something I never had before diagnosis!) -- it was as if my body was having to work much much harder to try to digest them. It is killing me because beans are a favorite of mine but just not something that I'm tolerating right now. It is even worse than not having cheese...*sniff*

[pricklypear1971]

Oops, forgot to say that the raw apples/corn/beans cause much more pain plus lots of noisy gut (something I never had before diagnosis!) -- it was as if my body was having to work much much harder to try to digest them. It is killing me because beans are a favorite of mine but just not something that I'm tolerating right now. It is even worse than not having cheese...*sniff*

Digestive enzymes and probiotics. And keep that food diary to pinpoint it further. You're doing great, keep it up, you'll figure it out!

Wow, hard enough reading labels in English. Can't imagine Polish! Sheesh!

[IrishHeart]

Oops, forgot to say that the raw apples/corn/beans cause much more pain plus lots of noisy gut (something I never had before diagnosis!) -- it was as if my body was having to work much much harder to try to digest them. It is killing me because beans are a favorite of mine but just not something that I'm tolerating right now. It is even worse than not having cheese...*sniff*

When your GI tract is inflamed and eroded from celiac, raw veggies and some fruits may be very difficult to digest. Beans are worse. And yes, sadly, the dairy. Some people (like me) have an issue with soy as well.

The small intestine is where the lactase, sucrase and maltase are produced--these enzymes are the ones needed to digest these foods. As the villi heal, so will your ability to digest and absorb the nutrients. In the meantime, they can cause MAJOR discomfort. (believe me, I know )

If you know all this already, forgive the anatomy lesson

Some people have issues with fructose malabsorption. People eat lots of veggies and fruit-- thinking they are healthy, because of course, they are!!-- but in a gut that is ravaged, they can be difficult to digest. At least it was for me anyway. For example, I know pineapple has natural digestive enzymes, so I tried to eat a lot of that when I was really sick before DX, wow!-- that was like eating shards of glass. Apples, cabbage, that sort of thing??---not friendly for me at all. Hubby tried juicing fruits and veggies for me--as I was losing weight at a rapid rate and he was trying to keep my electrolytes balanced and help me to keep something in. OUCH! might as well have poured battery acid down there....I was in agony and it left me quickly (if you get my drift)

I just could not eat many foods at all before DX without consequences.

Now, I can eat it all of these foods (YAAAY!!) (except for beans and too much sugar) without a problem. Still hoping to get beans back in the diet in time.

I second pricklypear's suggestion---digestive enzymes and probiotics. They work wonders! I think iherb. ships overseas.

Do not despair! Most people regain the ability to digest all of these foods as they heal their guts. Take care!

Best wishes!

[BabsV]

Again, thanks for all the great info and guidance on what to watch for. I was drinking fresh fruit juice (trying to get more vitamins and minerals) and have cut it out completely. That actually seems to be helping in terms of burning and pain issues. Also, in looking back at my less-than-detailed food diary I realized I was clumping together my proteins and mostly eating those at lunch and dinner. I'm now spreading those out throughout the day but eating much smaller amounts at a time. This also seems to be helping. Maybe I was just overwhelming my system with too much at a time...I've gone to several small meals/bigger snacks throughout the day in the last 2-3 days. I'm hoping this helps!

[IrishHeart]

Again, thanks for all the great info and guidance on what to watch for. I was drinking fresh fruit juice (trying to get more vitamins and minerals) and have cut it out completely. That actually seems to be helping in terms of burning and pain issues. Also, in looking back at my less-than-detailed food diary I realized I was clumping together my proteins and mostly eating those at lunch and dinner. I'm now spreading those out throughout the day but eating much smaller amounts at a time. This also seems to be helping. Maybe I was just overwhelming my system with too much at a time...I've gone to several small meals/bigger snacks throughout the day in the last 2-3 days. I'm hoping this helps!

Several small meals is MUCH better on digestion and for keeping blood sugar stable. Try to balance your carbs with proteins. definitely eat Protein at breakfast. Eat as many greens as you can stand They really help! HYDRATE all day.

May I tell you something ...so you see why healing the gut resolves many other problems? My story is long and complicated and many on here already know it. I'll give you the cliff-notes version.

If I can heal, anyone can.

My blood sugars were so erratic for so long (3 1/2 years) , and I had heart palpitations, A-Fib, and constant pain in my chest and I was tested repeatedly for diabetes and wore a holter monitor for my heart. I was always nauseous, dizzy, had ataxia, insomnia for 3 years (barely sleeping for 2 -3 hours some nights--it was horrible) and DOZENS of symptoms no one could explain.I couldn't breathe or walk, think or articulate clearly. I thought I would lose my mind with what was going on. I was BURNING from head to toe. They thought it was my thyroid, too--putting me on medicine (I do not need). YOU CANNOT BELIEVE HOW BAD IT WAS. I was slowly dying. Doctors told me to get a scooter and live with it (whaaat??) They thought I had so many diseases: diabetes , MS, lupus, fibromyalgia, spondyloarthropy, GERD, "IBS", adrenal disease, serious low blood pressure, liver disease, pancreatitis, crohn's, giarddia, anxiety and mental health issues....UM, nope, nope, nope, nope...!!!

Almost everything has resolved since going gluten-free, except severe joint/bone/muscle & nerve pain. That continues to make my life hell, but my doctor and I believe it can lessen in time as I resolve the many vitamin/mineral deficiencies I had. I work continuously with a PT and an MT, slowly regaining my mobility and my life. I never give in.

For the first time since 2007, I have been able to drink some orange juice without searing pain--- and I do not take any antacids whatsoever. NO D. NO C...just "NORMAL" So much for the DX of GERD and IBS....

You'll get there too! Hang in there!! Please, keep me posted on your progress!!

[BabsV]

May I tell you something ...so you see why healing the gut resolves many other problems? My story is long and complicated and many on here already know it. I'll give you the cliff-notes version.

If I can heal, anyone can.

Wow. Thank you for sharing your story. I'm so glad to hear that you've resolved so many of your health issues. Thank you also for the support. It really does help as I go through the process of being a newbie!

So far, so good with the changes I've made. The smaller amounts of protein several times a day is working really well -- I feel like I have a little more energy. Yay! Now if the brain fog would just start to clear up, that would be awesome!

I just have to remember how horrible I felt in the weeks prior to diagnosis and in comparison, I feel soooooo much better now. It's only been 2 months on the diet and already people are saying I look better (I had gotten really really frail) and just 'seem' better overall. If people are commenting, it must be a marked improvement. I keep telling myself that in another 2 months I should be even better!

[dilettantesteph]

At the 2 month point, it is likely too soon to get worried. It can take awhile to heal. I had the same experience except that some of the bad days were really bad. They weren't quite as bad as pre diagnosis, but pretty close.

I came to realize that I was a super sensitive celiac and I had to be a lot more careful about my diet. There are things in your diet and lifestyle which I had to quit to feel healthy.

As time goes on you may need to consider other possibilities. These include super sensitivity as well as a huge list of things including other food sensitivities, intestinal parasites, other immune conditions, Lyme disease etc. You will need to have a doctors assistance, just be sure to include super sensitivity in the list. The doctor might not be aware of it.

[IrishHeart]

I echo Steph's suggestions. Stay the course--- as there will be ups and downs-----and if you are still experiencing symptoms in a few months, some testing for other health issues may be in order.

The brain fog took a few months to lessen and frankly, I still have some pesky short term memory issues--but I was very sick for several years--and your experiences may be very different. At one point, Babs, I could not do simple tasks like read a book, make dinner, drive or balance a checkpoint without feeling overwhelmed, confused, anxious and making mistakes. My reflexes were shot , my arms and legs did not work properly and I was feeling "surreal" at times. ( And I am a gourmet cook, for pete's sake--how can one forget how to cook???!! I used to read 3 books at a time and while on gluten, I could not read a single paragraph and comprehend it all)

It was me as a "gluten head"--- as I call it---and that was all very frightening and made me cry--I kept asking doctors : what the hell is going on??

....Now, I can multi-task like my old super-organized self l!

Being able to resume these activities keeps me focused and allows me to relax and know that am healing--slowly but surely. And you will too!!

Hang in there, stay the course and keep us posted! You're doing great!

[jswog]

I'd just like to take a minute to thank each and every one of you who took the time to respond to this thread. Thought I am not the OP, I too am very new to the gluten free lifestyle (right at one month now) and have been greatly encouraged by all of you who've shared your stories here! Thank you!!!

[mushroom]

That's the one thing I noticed, but it took almost a year before people started saying, wow, you look like you're feeling better, you're looking well, etc. A big diference from a doctor who wrote a report to another of my doctors, "I recently saw Mrs. X who looks older than her stated age of 100"

[IrishHeart]

That's the one thing I noticed, but it took almost a year before people started saying, wow, you look like you're feeling better, you're looking well, etc. A big diference from a doctor who wrote a report to another of my doctors, "I recently saw Mrs. X who looks older than her stated age of 100"

:lol: oh shroomie!

My PT--who started working with me nearly a year ago when I was DXed --said recently..."wow, you look sooo much better than when you first came in here. You looked like hell back then...."

She's right...For a few years, I looked like "death warmed over" as my Gramma used to say.

[IrishHeart]

I'd just like to take a minute to thank each and every one of you who took the time to respond to this thread. Thought I am not the OP, I too am very new to the gluten free lifestyle (right at one month now) and have been greatly encouraged by all of you who've shared your stories here! Thank you!!!

well, thank you! I was where you are and I was very discouraged for the first few months as my progress was extremely slow---and all of these wonderful people on here bouyed me up on a daily basis. Even when I had doubts of "This is not working, OMG, I'm going to be like this forever! How will I get to where these people are???", the many stories of healing from the generous members on this forum gave me the added boost I needed. When you start to "come out the other side", you realize...."I'm getting my life back. I'm going to be all right!!"

Best wishes to you!!

[jswog]

When you start to "come out the other side", you realize...."I'm getting my life back. I'm going to be all right!!"

Believe it or not, I'm actually already feeling that way even after only one month. It feels that in one month, I've reverse aged (for lack of a better term for it) about 10 years. For only 35, I felt VERY OLD many days: crawling to the bathroom in the morning because my body hurt too badly to walk, having to sit or lean on something to get dressed because I couldn't balance to do it, feeling like everywhere I went or didn't go revolved around knowing where bathrooms were, and I could go on... Now (while I will never be a morning person nor jump out of bed with the alarm), I can actually get out of bed, go to the bathroom, and get dressed to start each day relatively pain free. And I know it will just continue to get better and better!

[AVR1962]

Got to agree with the previous posts here. I too have learned so much from everyone here. It is nice to be able to brainstorm thru my health issues with people who have experienced them first hand. The support and understanding, being able to read others dealing with the same frustrations is all very helpful. 6 months out and I have a way to go. I had been feeling really well, back off on my vits and 10 days later some of my sypmtoms were back, ugh. So I know I have more healing to do yet but I am encouraged by the progress I have made.

[IrishHeart]

One thing to keep in mind is....not how far you still have to go, but how far you've come.

I was like the walking dead for so long ....and now, 9 months gluten-free, I am approaching "normal". Again, everyone's healing time is different. I expect I'll take a few years.

I have a 3-page list of horrible symptoms I suffered for years (I am not kidding--my doctor told me he has never seen anyone with so many complications from celiac ---geesh, what a distinction ) YET--as a symptom decreases or disappears, I celebrate each and every one. I have a long way to go,for sure, but at least NOW, I am on the right road. (It was hell getting it figured out, but I did and that's all that matters)

Just stay the course...!!Hang in there!

[adab8ca]

chiming in late to the dance but I can only echo everyone's sentiments that healing can be slow, excruciatingly slow but we celebrate the baby steps. A year ago I was SURE i was going to end up in a wheelchair or dead, I was so sick, in so much pain and nobody knew what was wrong...Mr Dr. actually said "Once we figure this out, you have to be a case srtudy for medical school! Bless her for believing we would figure this out!

Recently I started going to a cardio bootcamp class! You WILL get there, it just takes tome. My biggest piece of advice is Be Kind To Yourself. You have probably fought a war with your body for a long time. It's OK to take it easy and let yourself heal.

Wishing you only good health and Sto Lat!!!