How do you know if you’re healing?

[matthew1989]

I have just been told I have celiac. Have had symptoms for about two years, mostly abdominal pain and relatively new diarriah. I have been gluten free for about 2 weeks along with cutting out cross reactive foods. How long should it take to have those above symptoms to go away. I feel as though my symptoms are worse being gluten free.

 

Thanks 

Matt

[MisterSeth]

about 3 months. only oats are potentially "cross-reactive", you'll be lactose intolerant until after you recover, but lactose doesn't cause an auto-immune reaction it just gives you a lot of gas and bloating. You will also probably need to start supplementing vitamins if you don't already. It took me a bit of trial and error to find out what I was lacking, but for me it was B1, D, Magnesium, and zinc. I recommend starting with a "b-complex" supplement, if you have sore muscles try a magnesium, sore joints try calcium, burning stomach try D, feeling of physical weakness in general B-complex

[notme]

keep a food journal.  many foods are probably going to cause you discomfort to digest for awhile.  what did knitty kitty call it?  a "mood, food, poo'd" journal - what did ya eat, how did ya feel, how was the level of discomfort/digestion.  that will help you to eliminate some foods for a while until you heal up some and your villi get healthy.  once you get a list of 'safe' foods, just stick to those for awhile, then try adding in some of the foods you've been avoiding one by one.  some (yeah, oats) I couldn't eat for many years, some I had to just skip for a bit.  soy, nightshades, and I would lay off the dairy in the beginning.  your villi tips is where the enzyme that breaks down lactose is made.  if your villi are damaged, you will likely have lactose intolerance until your villi heal enough to digest lactose.  I think I skipped dairy for about 6 months, (but I used lactaid milk and it was ok, just a little in my tea every morning) then add it back in, you know, a little bit, see how you feel.  everybody's different, so experiment what works for you.

welcome to the club you never wanted to join good luck!!  

[MisterSeth]

  On 5/18/2020 at 4:28 PM, notme! said:

keep a food journal.  many foods are probably going to cause you discomfort to digest for awhile.  what did knitty kitty call it?  a "mood, food, poo'd" journal - what did ya eat, how did ya feel, how was the level of discomfort/digestion.  that will help you to eliminate some foods for a while until you heal up some and your villi get healthy.  once you get a list of 'safe' foods, just stick to those for awhile, then try adding in some of the foods you've been avoiding one by one.  some (yeah, oats) I couldn't eat for many years, some I had to just skip for a bit.  soy, nightshades, and I would lay off the dairy in the beginning.  your villi tips is where the enzyme that breaks down lactose is made.  if your villi are damaged, you will likely have lactose intolerance until your villi heal enough to digest lactose.  I think I skipped dairy for about 6 months, (but I used lactaid milk and it was ok, just a little in my tea every morning) then add it back in, you know, a little bit, see how you feel.  everybody's different, so experiment what works for you.

welcome to the club you never wanted to join good luck!!  

Expand Quote  

even gluten free oats give 10% of celiacs an identical reaction to gluten. some celiacs can really obviously tell when their body isn't digesting something or somethings gone wrong. I had tonnes of symptoms but they were always minor, take a day off school my dad's shouting at me about how I'm going to grow up to become a lazy slob, take a day off work by boss thinks im faking, it eventually turns into this battle with yourself and you literally ignore sickness until you fall over.

[notme]

oats were deff a problem.  honestly, it took me 10 (TEN) years to be able to eat them again once in a while.  I obviously missed them a lot!!  so, I kept trying them every 6 months or so, and different brands until I either healed enough to be able to digest them or I got lucky and this one brand is actually not cross contaminated. 

misterseth, you are correct.  a percentage of celiacs will never be able to eat oats.  also, that is super sucky about people who don't understand how awful this disease can make you feel.  I hope you ignore negative people and continue to take the best care of yourself.  the best revenge is living well.   

 

[matthew1989]

Thanks for the responses! I have been sticking to whole foods. Mostly baked or grilled chicken. With a vegi and sweet potato. Vegi consists of either carrots, string beans, broccoli, cucumbers. Sweet potatoes have been pretty good to me. Mornings I have gluten-free beacon, and banana. Snacks are either blueberries, blackberry, hunny dew mellon, gluten-free apple sauce with no additive. Lunches consist of leftovers from the prior evening. 

Is it normal with this change in diet to have way more gas? Or bouts of pain i think caused by gas? Along with diarrhea? Just curious if others who jumped right in to the gluten free diet and taking out other foods that act like gluten. I dont do dairy, soy, egg, potatoes, coffee, sweets, rice and more.

I have been keeping a food log but its hard to say if symptoms are from a current food digested or something that was ate a day earlier. Some foods might cause discomfort one day and next day i eat the same thing and have no problem. I have no gluten in my house. And all pots and pans are gluten free of cross contamination. 

The replies are greatly appreciated and would lobe to learn way more about this.

I meet with a licensed dietitian Thursday.

Thanks,

Matt

[Corinne D.]

Hi Matt, have you tried eating only well-cooked fruits and vegetables? Raw stuff can be tough to digest for a while for a damaged gut. Hang in there.

[notme]

  On 5/18/2020 at 6:00 PM, Corinne D. said:

Hi Matt, have you tried eating only well-cooked fruits and vegetables? Raw stuff can be tough to digest for a while for a damaged gut. Hang in there.

Expand Quote  

yes, definitely try cooking your veggies/fruits.  in the beginning, I could not eat raw veggies but cooked were ok.  after a while, I could eat raw things.  also, pay attention to your fructose intake - I had issues with fruits for a bit.  now, I can eat almost anything except gluten.  it takes TIME, too, so don't forget to take it easy on yourself.  i'm proud to say I can now eat and leave the house without any emergency bathroom breaks.   that being said, I had 25 years worth of damage, because the doctors were treating all my symptoms without actually finding the (celiac) cause.  

lolz, the dumb thing I am having issues with now is, weirdly, lettuce..... ?  and only if I eat it too close to bedtime.  my gi doc says it's common...….   yay......?

out of curiousity, I asked him last visit if certain foods can 'jump the line' like, if you eat something and your body says NOPE! and he said most definitely.  (blueberries!  lolz!  but that's the fructose thing)  and it will go to the front of the 'exit' 

Edited May 18, 2020 by notme!
add info

[Juca]

  On 5/18/2020 at 5:32 PM, matthew1989 said:

Thanks for the responses! I have been sticking to whole foods. Mostly baked or grilled chicken. With a vegi and sweet potato. Vegi consists of either carrots, string beans, broccoli, cucumbers. Sweet potatoes have been pretty good to me. Mornings I have gluten-free beacon, and banana. Snacks are either blueberries, blackberry, hunny dew mellon, gluten-free apple sauce with no additive. Lunches consist of leftovers from the prior evening. 

Is it normal with this change in diet to have way more gas? Or bouts of pain i think caused by gas? Along with diarrhea? Just curious if others who jumped right in to the gluten free diet and taking out other foods that act like gluten. I dont do dairy, soy, egg, potatoes, coffee, sweets, rice and more.

I have been keeping a food log but its hard to say if symptoms are from a current food digested or something that was ate a day earlier. Some foods might cause discomfort one day and next day i eat the same thing and have no problem. I have no gluten in my house. And all pots and pans are gluten free of cross contamination. 

The replies are greatly appreciated and would lobe to learn way more about this.

I meet with a licensed dietitian Thursday.

Thanks,

Matt

Expand Quote  

Yes, it is normal to have more gas.. especially if you are eating more fruits (more FODMAPS). It will be temporary, though. Check which foods are FODMAP rich and don't eat too much for a while. 

Early in my gluten-free diet, I had so much pain, that I almost went to the emergency room. It turns out it was almost always because I ate too much mangoes, apricots or cherrys. It's hard to resist when they're in season..

I also had for a while some digestive enzymes or mint oil capsules with meals. Doesn't hurt.

About still feeling like crap: I felt even worse than before for about the first 4/6 weeks on the gluten-free diet. Stick with it, it will be worth it. 

The first thing to go away was the mental fog and overall memory and mental stamina issues. It was like someone turned on a switch. Felt fantastic.

Physical energy improved more slowly, as the body started to absorb nutrients better and anemia improved. I took lots of vit.D (8000 IU/day), B12 injections and iron infusions, that helped a lot. 

The last thing to settle down was digestion in general. You'll need some patience. 

Luckily, I could digest dairy quite soon, but waited a year before having gluten-free oats.

[cyclinglady]

Be patient.  It takes most members about a year to heal.  Why?  The learning curve for the gluten-free diet can be steep for many.  It sounds like you are taking a “real food” approach which should prevent gluten exposures and expedite healing.  Identifying your personal food intolerances and nutritional deficiencies is also important.   The advice on consuming mushy foods that are easy-to-digest is spot on.  I do this after a gluten exposure as any food can be hard to digest when your gut is inflamed and under attack.   Know that it takes time for your antibodies to come down.  That means time for your body to stop the attack process.  

Welcome to the forum!  

Edited May 18, 2020 by cyclinglady

[MisterSeth]

  On 5/18/2020 at 4:42 PM, notme! said:

oats were deff a problem.  honestly, it took me 10 (TEN) years to be able to eat them again once in a while.  I obviously missed them a lot!!  so, I kept trying them every 6 months or so, and different brands until I either healed enough to be able to digest them or I got lucky and this one brand is actually not cross contaminated. 

misterseth, you are correct.  a percentage of celiacs will never be able to eat oats.  also, that is super sucky about people who don't understand how awful this disease can make you feel.  I hope you ignore negative people and continue to take the best care of yourself.  the best revenge is living well.   

 

Expand Quote  

its really more of a cautionary tale for parents to take their kids "faking sick" all the time seriously. I don't talk to my father at all anymore because he made one serious mistake towards the family and I just remember him as the guy who used to bully me every day.

[Cinda Murphy]

  On 5/18/2020 at 5:32 PM, matthew1989 said:

Thanks for the responses! I have been sticking to whole foods. Mostly baked or grilled chicken. With a vegi and sweet potato. Vegi consists of either carrots, string beans, broccoli, cucumbers. Sweet potatoes have been pretty good to me. Mornings I have gluten-free beacon, and banana. Snacks are either blueberries, blackberry, hunny dew mellon, gluten-free apple sauce with no additive. Lunches consist of leftovers from the prior evening. 

Is it normal with this change in diet to have way more gas? Or bouts of pain i think caused by gas? Along with diarrhea? Just curious if others who jumped right in to the gluten free diet and taking out other foods that act like gluten. I dont do dairy, soy, egg, potatoes, coffee, sweets, rice and more.

I have been keeping a food log but its hard to say if symptoms are from a current food digested or something that was ate a day earlier. Some foods might cause discomfort one day and next day i eat the same thing and have no problem. I have no gluten in my house. And all pots and pans are gluten free of cross contamination. 

The replies are greatly appreciated and would lobe to learn way more about this.

I meet with a licensed dietitian Thursday.

Thanks,

Matt

Expand Quote  

Matt I saw the list of foods you do not do. I wondered why on eggs and rice. They are both gluten free and full of nutrients. 
thanks, Cinda

[matthew1989]

  On 5/20/2020 at 2:42 PM, Cinda Murphy said:

Matt I saw the list of foods you do not do. I wondered why on eggs and rice. They are both gluten free and full of nutrients. 
thanks, Cinda

Expand Quote  

Hey Cinda,

Im nor 100% on what crossreactive foods are. But i do understand how they affect the body as gluten does from what i read. I have seen on several sites that those are crossreactive foods to gluten. I could be wrong this is why im seeing a nutritionist tomorrow. I just want to wipe out all possible causes of symptoms. As i said i could be completely wrong with what i have looked up. And all the information i gain from here is greatly appreciated.

Thanks

Matt

[cyclinglady]

  On 5/20/2020 at 3:22 PM, matthew1989 said:

Hey Cinda,

Im nor 100% on what crossreactive foods are. But i do understand how they affect the body as gluten does from what i read. I have seen on several sites that those are crossreactive foods to gluten. I could be wrong this is why im seeing a nutritionist tomorrow. I just want to wipe out all possible causes of symptoms. As i said i could be completely wrong with what i have looked up. And all the information i gain from here is greatly appreciated.

Thanks

Matt

Expand Quote  

Cross reactive foods?  This has been fake news on the internet for years. These foods (like coffee) do not cause a celiac disease reaction.  They do not ramp up antibodies.  Just gluten from wheat, barley, rye (and sometimes oats) can cause a true celiac reaction (again, increasing antibodies).  You might get GI distress from consuming coffee or soy, but it is not triggering antibodies that will attack your small intestine.  You will just suffer for a day or so.  

Now, it is true that because you have celiac disease, you might have additional intolerances due to a damaged gut.  Best to keep a food journal as everyone can have different intolerances.   The most common intolerance is lactose.  That is because the enzymes need to digest lactose (milk sugars) can not be released if villi tips are damaged.  Sometimes, you can get dairy back if you are not naturally lactose intolerant (a huge chunk of the world’s population is lactose intolerant though).  

Other common intolerances reported on this forum are soy, corn and nightshades.  Again, everyone is different.  I can eat potatoes, have corn tortillas, and  drink my coffee without setting off my antibodies that will attack my small intestine.  How do I know for sure?  I had a repeat endoscopy/biopsies confirming that I healed from celiac disease.  

To jumpstart healing, many members have realized the value of real food, single ingredient foods (like apple, rice, chicken, broccoli).  Avoiding processed foods is best until healing is underway.  That is because processed foods contain weird ingredients you would never have in your pantry.  Lots of preservatives, etc.  When you feel better, experiment with gluten-free processed foods.  

If you have questions or doubts, talk to a  registered dietician.  Follow celiac disease non-profit organizations or evidence-based celiac research centers for advice.   Still confused?  Ask us.  We can tell you if you are on a fake news website.  

[Rebecca P]

I've noticed that white rice triggers a reaction with me. Usually my celiac symptoms are immediate with fatigue and drowsiness within 20-30 minutes of consuming food with gluten or processed in a facility that has gluten products. Next day I will have multiple loose BMs and gas/discomfort. With COVID-19, I had a few food pantries give me the ability to select products before the general public distribution of pre-made boxes because I had no idea what would be given to me. I received re-bagged rice and beans, and I knew they came from 40 lbs bags that had been portioned out. But when I cooked the rice at home after thorough pre-washing, cooking and then consuming I had a reaction and passed out after 1-2 portions. I did have one food pantry go out and buy me food and specifically shopped for items marked gluten free which was such a great offer and service. I stay strictly to a whole food diet as well since process foods, even marked gluten free, are a gamble. I haven't had oats in several years because it was never a favorite of mine. Even making my own gluten free bread at home has been a learning curve since most of the time its dense. I've noticed eating more beans than meat protein helps in the BM with higher fiber and slower digestion. Definitely keep your vitamin and mineral levels in check and supplement with higher dosages since many of us have absorption issues. I found out that my B12 is still low and iodine is needed as well. So I've brought back in iodize salt in the diet and cooking beans with seaweed which is high in iodine (and also helps the digestion and gassy byproducts of consuming beans cooked from dry state). 

[matthew1989]

Thanks for the reply, so crossreactive foods are a myth? As in they may cause gi distress but not an autoimmune response? As in i can eat potato rice and so on as long as gluten free and it shouldnt hurt the intestine but may cause gi issues?

[cyclinglady]

  On 5/20/2020 at 4:13 PM, Rebecca P said:

I've noticed that white rice triggers a reaction with me. Usually my celiac symptoms are immediate with fatigue and drowsiness within 20-30 minutes of consuming food with gluten or processed in a facility that has gluten products. Next day I will have multiple loose BMs and gas/discomfort. With COVID-19, I had a few food pantries give me the ability to select products before the general public distribution of pre-made boxes because I had no idea what would be given to me. I received re-bagged rice and beans, and I knew they came from 40 lbs bags that had been portioned out. But when I cooked the rice at home after thorough pre-washing, cooking and then consuming I had a reaction and passed out after 1-2 portions. I did have one food pantry go out and buy me food and specifically shopped for items marked gluten free which was such a great offer and service. I stay strictly to a whole food diet as well since process foods, even marked gluten free, are a gamble. I haven't had oats in several years because it was never a favorite of mine. Even making my own gluten free bread at home has been a learning curve since most of the time its dense. I've noticed eating more beans than meat protein helps in the BM with higher fiber and slower digestion. Definitely keep your vitamin and mineral levels in check and supplement with higher dosages since many of us have absorption issues. I found out that my B12 is still low and iodine is needed as well. So I've brought back in iodize salt in the diet and cooking beans with seaweed which is high in iodine (and also helps the digestion and gassy byproducts of consuming beans cooked from dry state). 

Expand Quote  

Wow!  It sounds like you might a rice allergy.  Washing the rice (and a visual sort) should have removed any wheat/gluten residue.  I wonder if you could be reacting to arsenic levels, depending on how much rice you consume?  

How long  have you been gluten free?  I found that my iron levels improved as I healed from celiac disease.  At least, my doctors took this as a positive towards healing as antibodies can take up to a year to reduce.  Are you supplementing B-12 or getting enough from your diet?  It sounds like you may not be absorbing it which could be a sign of not being healed.  

I thought I was not healing, but a repeat endoscopy revealed that I had.  My symptoms were due to Chronic Autoimmune Gastritis (new diagnosis).   I learned not everything is due to celiac disease.  

[cyclinglady]

  On 5/20/2020 at 4:53 PM, matthew1989 said:

Thanks for the reply, so crossreactive foods are a myth? As in they may cause gi distress but not an autoimmune response? As in i can eat potato rice and so on as long as gluten free and it shouldnt hurt the intestine but may cause gi issues?

Expand Quote  

Yes, it is a myth.  But I think it is just a miscommunication of words.  Again, only gluten from rice, wheat and barley, produce a celiac reaction (increase TTG, EMA or DGP antibodies).  But people with damaged guts can have a hard time digesting anything.  For example, when my celiac disease is flaring, eating corn on the cob causes huge GI distress for me, yet I can consume ground corn tortillas.  Whole grains can be hard to digest for anyone.   Scientists are finding that leaky guts do exist, so celiacs are prone to food allergies and intolerances.  You just need to figure out what affects you.  

Now, if potatoes or rice cause you to have stomach ache, stop eating it for a while.  While you will not trigger a celiac disease reaction, why would you want to have a belly ache?  That does not seem conducive to healing.  

[Posterboy]

  On 5/20/2020 at 5:16 PM, cyclinglady said:

Yes, it is a myth.  But I think it is just a miscommunication of words.  Again, only gluten from rice, wheat and barley, produce a celiac reaction (increase TTG, EMA or DGP antibodies).  But people with damaged guts can have a hard time digesting anything.  For example, when my celiac disease is flaring, eating corn on the cob causes huge GI distress for me, yet I can consume ground corn tortillas.  Whole grains can be hard to digest for anyone.   Scientists are finding that leaky guts do exist, so celiacs are prone to food allergies and intolerances.  You just need to figure out what affects you.  

Now, if potatoes or rice cause you to have stomach ache, stop eating it for a while.  While you will not trigger a celiac disease reaction, why would you want to have a belly ache?  That does not seem conducive to healing.  

Expand Quote  

To All,

I just wanted to correct this in case someone else reads this....and thinks rice has gluten in it....

Cyclinglady was talking about rice and inserted Rice into the conversation....I think they call it a Freudian slip...

Only RYE, wheat and barley have gluten in them....

I hope this is helpful.

Posterboy,

[cyclinglady]

  On 5/22/2020 at 9:37 PM, Posterboy said:

To All,

I just wanted to correct this in case someone else reads this....and thinks rice has gluten in it....

Cyclinglady was talking about rice and inserted Rice into the conversation....I think they call it a Freudian slip...

Only RYE, wheat and barley have gluten in them....

I hope this is helpful.

Posterboy,

Expand Quote  

Thank you for catching my error.  Rice is safe for those who have celiac disease or NCGS!  

[matthew1989]

  On 5/18/2020 at 7:46 PM, Juca said:

Yes, it is normal to have more gas.. especially if you are eating more fruits (more FODMAPS). It will be temporary, though. Check which foods are FODMAP rich and don't eat too much for a while. 

Early in my gluten-free diet, I had so much pain, that I almost went to the emergency room. It turns out it was almost always because I ate too much mangoes, apricots or cherrys. It's hard to resist when they're in season..

I also had for a while some digestive enzymes or mint oil capsules with meals. Doesn't hurt.

About still feeling like crap: I felt even worse than before for about the first 4/6 weeks on the gluten-free diet. Stick with it, it will be worth it. 

The first thing to go away was the mental fog and overall memory and mental stamina issues. It was like someone turned on a switch. Felt fantastic.

Physical energy improved more slowly, as the body started to absorb nutrients better and anemia improved. I took lots of vit.D (8000 IU/day), B12 injections and iron infusions, that helped a lot. 

The last thing to settle down was digestion in general. You'll need some patience. 

Luckily, I could digest dairy quite soon, but waited a year before having gluten-free oats.

Expand Quote  

The brain fog/memory, did that start after you went off gluten and lasted about 4/6 weeks or was that because of the gluten consumption?

[Juca]

The brain fog/memory problems were caused by the gluten. However, I felt even worse in the beginning of the diet, but it eventually gets much better and goes away completely.

Some people give up on the diet too soon because of this, that you might feel worse in the beginning, and not give it enough time to work.

[MisterSeth]

  On 5/25/2020 at 11:11 AM, Juca said:

The brain fog/memory problems were caused by the gluten. However, I felt even worse in the beginning of the diet, but it eventually gets much better and goes away completely.

Some people give up on the diet too soon because of this, that you might feel worse in the beginning, and not give it enough time to work.

Expand Quote  

to add to this, you probably won't know you had brain fog until it goes away. as far back as grade 4 (18 years before diagnoses) i would get in a lot of trouble for "day dreaming" literally every chance I got. I never ended up with an ADHD diagnosis because the teacher was comparing me to my older sister ("reverse" sexism anyone?) in a completely ridiculous way.

[matthew1989]

Oh wow. Ever since i changed my diet, I cant focus, i get light headed and dizzy. Almost the feeling I could faint. I dont know if its because the drastic change to my diet. No sugars other than natural in fruit no caffeine, no dairy and so on. Is this normal for withdrawals?

[MisterSeth]

  On 5/26/2020 at 6:03 PM, matthew1989 said:

Oh wow. Ever since i changed my diet, I cant focus, i get light headed and dizzy. Almost the feeling I could faint. I dont know if its because the drastic change to my diet. No sugars other than natural in fruit no caffeine, no dairy and so on. Is this normal for withdrawals?

Expand Quote  

it can be. are you also experiencing caffeine withdrawal? dairy and gluten both produce opiates in your gut so in some ways its a lot like quitting a morphine addiction. but your symptoms can also be described by a B vitamin deficiency or a caloric deficit. make sure you're replacing the gluten with some rice or something, make sure you're replacing the dairy with nuts and legumes or meats if you eat meat