Timeline of recovery

[Patremagne]

I know this is probably the single most commonly-asked question here, so I apologize in advance if so.

I was diagnosed ~ a month ago and have been off gluten ever since (minus some occurrences of possible CC), but have seen very little improvement in terms of daily nausea. 2 weeks ago I managed to go 3 days in a row without nausea, but went right back in the gutter afterward. This past week, on Thursday, I felt as close to normal as I can remember being for a span of a day, but again fell right back in the gutter on Friday and into this weekend. I've used a test kit recently during one of the bad days that came back negative, so gluten is unlikely. It's a relatively constant rumbling feeling of nausea (almost like I'm hungry) that bubbles up my throat, occasionally paired with cramps and the feeling that something is kind of lodged in the center of my chest right behind where the ribcage ends in the center. GasX and beano have been ineffective.

My GI said my endoscopy didn't show any signs of constant reflux damage or anything like that. I'm taking 80mg omeprazole per day per my GI, and I'm unsure if it's helping at all or possibly even making it worse, as I know it can cause nausea and headaches. I recently had an MRI that reassuringly showed no signs of Crohn's or anything worse.

I've read various posts that the recovery timeline can be months to years, and people have had things like reflux persist for that long before going away, but I'm just looking for some advice.

[kareng]

It can take months, even a year or more, to completely heal.  But, you can start to feel better in a few days to a few weeks, if you see strictly gluten-free.  That means no gluten at all!  Small amounts will continue the damage/ antibody production.

it is possible that some of your issues are caused by something else.  

You might want to cut out (or down) on the lactose in dairy  for a month or so - the part of the intestines that is damaged by Celiac is the part that helps digest milk.  

You need to give it time.  Maybe eat simple and mild foods for a few weeks.  

[Ennis-TX]

Might read the newbie 101 section to see if you missed anything, it can take over 6 weeks for your bodies antibodies to go down completely and stop causing damage after exposure, and much longer to fully heal. 
https://www.celiac.com/forums/topic/91878-newbie-info-101/
Another suggestion is many of us get other food intolerances, sensitivities, or allergies and have to remove other foods, common ones are dairy, soy, oats, in some cases nightshades, chocolate, coffee, etc. Many things you will be sensitive to til you heal, think of your intestines as "carpet burned" acidic, rough, and spicy foods are going to cause problems.  Stick to simple whole foods and start keeping a food diary, an elimination diet could help find your problem foods. 
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
https://www.wikihow.com/Keep-a-Food-Diary
Bloating and gas can be reduced by going low carb, like a paleo diet with emphasis on keto macros for some, but go with leaner easy to digest meats cooked til very tender, same with your veggies. Digestive enzymes can also help.

 

[Patremagne]

27 minutes ago, Ennis_TX said:

Might read the newbie 101 section to see if you missed anything, it can take over 6 weeks for your bodies antibodies to go down completely and stop causing damage after exposure, and much longer to fully heal. 
https://www.celiac.com/forums/topic/91878-newbie-info-101/
Another suggestion is many of us get other food intolerances, sensitivities, or allergies and have to remove other foods, common ones are dairy, soy, oats, in some cases nightshades, chocolate, coffee, etc. Many things you will be sensitive to til you heal, think of your intestines as "carpet burned" acidic, rough, and spicy foods are going to cause problems.  Stick to simple whole foods and start keeping a food diary, an elimination diet could help find your problem foods. 
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
https://www.wikihow.com/Keep-a-Food-Diary
Bloating and gas can be reduced by going low carb, like a paleo diet with emphasis on keto macros for some, but go with leaner easy to digest meats cooked til very tender, same with your veggies. Digestive enzymes can also help.

 

Thanks. I've been trying a low FODMAP diet which hasn't shown too much of a difference yet, and I rarely consume dairy or spicy food (at least since the diagnosis). I do have coffee, but only one cup/day, guess I could try cutting that for a few days but there's no food product that I enjoy more than coffee.

I may have to try low carb though. It's been hectic for me trying to find foods that have flavor and are low FODMAP while also trying to gain some weight that I've lost.

Edited June 2, 2019 by Patremagne

[GFinDC]

Hi,

One month is really just starting the gluten-free diet and the healing process.  At 6 months you are probably more likely to have made some progress IMHO.  But keep at it, because the gluten-free diet gets easier after time.

Your digestion may be somewhat touchy or easily upset for the first year.  You are adopting a whole new diet and your body needs to adjust.  As your intestines heal they replace worn smooth villi with new long villi.  Those new villi provide a substantially higher amount of surface area for bacteria to inhabit.  So your gut flora mix can change dramatically, and probably for the better.  That gut flora mix improvement is likely to go better if you eat low sugar and carbs IMHO.

Veggies. meats, eggs, and nuts are a good diet to start.  Mostly cooking your own food and eating at home is good too.  A fairly simple easy to digest diet is helpful.  You may find digestive enzymes help or Betaine HCL.

[Patremagne]

3 hours ago, GFinDC said:

Hi,

One month is really just starting the gluten-free diet and the healing process.  At 6 months you are probably more likely to have made some progress IMHO.  But keep at it, because the gluten-free diet gets easier after time.

Your digestion may be somewhat touchy or easily upset for the first year.  You are adopting a whole new diet and your body needs to adjust.  As your intestines heal they replace worn smooth villi with new long villi.  Those new villi provide a substantially higher amount of surface area for bacteria to inhabit.  So your gut flora mix can change dramatically, and probably for the better.  That gut flora mix improvement is likely to go better if you eat low sugar and carbs IMHO.

Veggies. meats, eggs, and nuts are a good diet to start.  Mostly cooking your own food and eating at home is good too.  A fairly simple easy to digest diet is helpful.  You may find digestive enzymes help or Betaine HCL.

I appreciate the info. Do the symptoms of celiac disease listed everywhere generally persist for that long? I'm mostly referring to the GI stuff like bloating, cramping, persistent hunger, etc, and the fatigue. 

Despite the upper endoscopy and the MRI showing no signs of cancer, I'm still stressing because the two seem to have a lot of overlap in terms of symptoms. 

[notme]

3 hours ago, Patremagne said:

I appreciate the info. Do the symptoms of celiac disease listed everywhere generally persist for that long? I'm mostly referring to the GI stuff like bloating, cramping, persistent hunger, etc, and the fatigue. 

Despite the upper endoscopy and the MRI showing no signs of cancer, I'm still stressing because the two seem to have a lot of overlap in terms of symptoms. 

you might try to keep a food journal to see what you are having problems specifically with.  when I first started, I could only eat cooked vegetables for example.  I had problems with soy and nightshades as well.  as my guts started to heal, I was able to add most foods (except gluten!) back into my diet.  also, your gut flora is probably in not great shape, so probiotics are a good idea.  warning, lolz, they will make your guts act/sound like they're in a war zone for 2 weeks until they get a good 'foothold'  - but that's normal - 

my food journal:

'food eaten'           good 1 2 3 4 5 6 7 bad 

say I ate 'meatloaf' and I had a 5 plus to bad reaction.  then you break down specific ingredients and try them by themselves.  like I could try a plain hamburger to check the meat.  cook up some onions and see if they are the suspects, etc but leave time in between so you can be fairly sure what not to add next time.  THIS IS NOT PERMANENT.  as you start feeling more healed, progress to more different foods.  I've had to go back to the journal many times and it's helped very much to feel comfortable while you're figuring stuff out.  good luck!  welcome to the club you never wanted to join ?

[GFinDC]

7 hours ago, Patremagne said:

I appreciate the info. Do the symptoms of celiac disease listed everywhere generally persist for that long? I'm mostly referring to the GI stuff like bloating, cramping, persistent hunger, etc, and the fatigue. 

Despite the upper endoscopy and the MRI showing no signs of cancer, I'm still stressing because the two seem to have a lot of overlap in terms of symptoms. 

Hi,

No, those symptoms should subside within 6 months.  However, that timeline depends on being really near perfect with the staying 100% gluten-free.  Every bit of gluten can spark a renewed immune system attack, and drag out/delay the healing process for weeks to months.  A  lot depends on the individual and how much damage they had to start out.  It may be that after several years gluten-free, your immune system will become less reactive to minor gluten ingestion, but maybe not too.

It may help to think of your gut as a wounded soldier that needs tender care to heal.  Less spicy/irritating foods are helpful.  Cooking your own food so you know what's in it helps too.

Not eating dairy and oats can also be very helpful.