2 Months Gluten Free & Still.....

[morvenite]

I'm new here. Was diagnosed by biopsy 2 months ago and despite being Gluten Free for 2 months, I'm still having periodic problems with severe diarrhea. The bouts always seem to occur in the morning, after a normal BM. Breakfasts are simple (gluten-free cereal and some fruit). I'm puzzled and frustrated -  any suggestions ? 

[Trixlm]

So I've been having the same issues.  I have been nearly 100% gluten free for the past 3 months... I still have symptoms like fatigue, diarrhea, bouts of brain fog etc and considering whatever damage has been done it takes a while for your body to regenerate and heal. Do you at least feel better overall?  I'm not an expert and have not yet been diagnosed with celiacs or non-celiac gluten intolerance but from my own experience, advice from this forum, and personal research it is all about what you eat and a lot of times people with this problem are given dense nutrional options like gluten free pizza, gluten free donuts, cereals, breads, etc... but what a person in this condition really needs are WHOLE foods, almost paleo and whomever can tolerate grains and some dairy. So in that sense try a break from anything processed and opt for whats tolerable that is natural in its own form... so nothing in boxes or cans, fruit, some nuts, animal proteins... it is all individual to what your body can or can't handle other than the fact that you can't have gluten. Most importantly check for possible vitamin deficiencies that you may need to supplement on and be patient because it's most likely your body trying to heal I hope you get better, I know it's tough but you're on the right track, give it time and maintain positive thinking

[shadowicewolf]

I would consider cutting dairy for a while. That could be causing it.

[morvenite]

Thanks for the thoughts and ideas. I'll definitely try eliminating dairy - especially since I often have some yogurt at breakfast.

 

I'm really curious about the "delay time" between eating a "problem" food and the onset of diarrhea. Is it typically almost immediate (say... within an hour) or can the problem manifest itself 12-24 hours later?

 

All input welcome !!

 

 

[susanf]

I'm new here. Was diagnosed by biopsy 2 months ago and despite being Gluten Free for 2 months, I'm still having periodic problems with severe diarrhea. The bouts always seem to occur in the morning, after a normal BM. Breakfasts are simple (gluten-free cereal and some fruit). I'm puzzled and frustrated -  any suggestions ? 

Hello Morvenite, I empathize with your frustration. It may take some time for you to learn where gluten is hidden (not intentionally). You can find a list foods that contain gluten but are not necessarily labeled as such. Also, I stay clear of Oats even if they are labeled as gluten free. I too struggle with this. On another note, stay hydrated with electrolytes if you continue to have diarrhea. Keep well. Susan

[susanf]

Has anyone found a good food journal for tracking gluten mishaps and other food allergens?

[anti-soprano]

For the first few months, I would have symptoms and not really know why.  I did keep a food journal for about a month.  It made me feel as though I was keeping track of some things, especially since my symptoms were delayed (which is why I had no real idea I had celiac until a good GI helped me out).  The first real glutening I had after ditching the gluten was about 3 hours and it was from a liquid source-margaritas to be exact.  Who knew!  Now my reaction time tends to be about 6 hours, but usually from cross contamination of some kind.  I have read other people say in the forum that sometimes their reaction times change and sometimes they don't.  Sometimes their symptoms change and sometimes they don't.  I think it really depends.  Also, some people feel the effects right away and other people have posted in the forum that it takes them a good day or two to react.

 

Going back to the symptoms you are having- in my case, it has taken a lot of detective work to figure things out.  I was glutened off of our grill (that took a couple of times).  We used to cook pizza on the grill and apparently gluten is resistent to the fire!  I just found out that the hand sanitizer I have been slathering all over my hands before I eat has wheat in it.  I couldn't figure out why I would come home from work for weeks feeling as though I have been slightly glutened even though everything I ate was safe.  Take a look at your bath and beauty products as well as limiting dairy for a bit.  Gluten can be in shampoo, toothpaste, chap stick, all forms or make up including lip stick, hand lotion... Maybe something else in your morning routine is causing you to react?

 

Good luck to you!  I love to know when you figure it out : )

[NiceNurse]

For the first few months, I would have symptoms and not really know why.  I did keep a food journal for about a month.  It made me feel as though I was keeping track of some things, especially since my symptoms were delayed (which is why I had no real idea I had celiac until a good GI helped me out).  The first real glutening I had after ditching the gluten was about 3 hours and it was from a liquid source-margaritas to be exact.  Who knew!  Now my reaction time tends to be about 6 hours, but usually from cross contamination of some kind.  I have read other people say in the forum that sometimes their reaction times change and sometimes they don't.  Sometimes their symptoms change and sometimes they don't.  I think it really depends.  Also, some people feel the effects right away and other people have posted in the forum that it takes them a good day or two to react.

 

Going back to the symptoms you are having- in my case, it has taken a lot of detective work to figure things out.  I was glutened off of our grill (that took a couple of times).  We used to cook pizza on the grill and apparently gluten is resistent to the fire!  I just found out that the hand sanitizer I have been slathering all over my hands before I eat has wheat in it.  I couldn't figure out why I would come home from work for weeks feeling as though I have been slightly glutened even though everything I ate was safe.  Take a look at your bath and beauty products as well as limiting dairy for a bit.  Gluten can be in shampoo, toothpaste, chap stick, all forms or make up including lip stick, hand lotion... Maybe something else in your morning routine is causing you to react?

 

Good luck to you!  I love to know when you figure it out : )

 

 

I'm new here. Was diagnosed by biopsy 2 months ago and despite being Gluten Free for 2 months, I'm still having periodic problems with severe diarrhea. The bouts always seem to occur in the morning, after a normal BM. Breakfasts are simple (gluten-free cereal and some fruit). I'm puzzled and frustrated -  any suggestions ? 

I'm sorry you still have symptoms, but it can take years for the intestines to recover from a lifetime of celiac.  Also, you can be sensitive to other grains as well and as other people have answered, other ingredients.  The processed gluten-free foods can be especially harmful as they contain an array of fillers and substitutes.  Xanathan gum, for one is frequently used as a binder and is a known laxative!  This alone could be your problem.  You need to read labels carefully and become a detective.  Start your day with fruits, eggs, vegetables.  Start juicing as veggies are very high in anti-inflammatories.  Look up anti-inflammatory diet and that should help.  It is not easy and it's not fun, but after awhile you learn to eat to live and it becomes more important to feel good than to eat.  Blah...  but true

[notme]

Thanks for the thoughts and ideas. I'll definitely try eliminating dairy - especially since I often have some yogurt at breakfast.

 

I'm really curious about the "delay time" between eating a "problem" food and the onset of diarrhea. Is it typically almost immediate (say... within an hour) or can the problem manifest itself 12-24 hours later?

 

All input welcome !!

in the beginning of my gluten-free diet, my reaction time (causing the big D) was almost immediate.  like i licked my fingers while re-heating 'regular' food for the kids and BOOM 5-15 min later i was running to the bathroom.  now that i am a few years in, it takes 2 days to get the full on reaction.  it will start sneaking up on me within 12 hrs i will get a headache.  then all my joints hurt, pain under ribcage, severe fatigue, cranky mean irritable.  i actually notice when i start feeling bad now that i normally feel so good.  when i was very damaged and sick, i felt bad all the time so didn't really notice when i felt sick-er.  the only thing i noticed was the D.  if that makes any sense    now that i DON'T have a headache ALL THE TIME i notice when i get one.....

 

nope, the grill won't burn off the gluten.  unless you have a grill that can do, like, 650 F.  i use tinfoil when i have to grill on a un-dedicated grill.  i have a little one for me when i'm home that has never touched gluten.  also, good call on the hand sanitizer - my first camping experience i was sick as a dog and couldn't figure out why!!  now it's soap & water    

[CaliSparrow]

It is recommended that we eliminate dairy from our diets for 6 months and then try reintroducing it. I will probably just stick with goat milk products instead of the full range of dairy products when I reach that milestone. Also, the Paleo diet made me feel so much better (that's no grains). I've spent many months eliminating one thing after another and decided to take a quicker route (Paleo). Last night I binged on raisins and am not feeling too well today. It's just not worth it to cheat. Many people don't have to give up all grains. I simply wanted to get off the roller coaster and feel better.

Hang in there and good luck!

Cali

[~**caselynn**~]

Welcome! I'm seeing some great suggestions here, so I guess I'll jump in too! Lol I'm a big advocate for the food journal, doesn't have to be anything more than a little notebook that will fit in your pocket. Something that you can jot down what you eat and how you feel, so you can track what makes you feel yucky, for lack of a more scientific word.

[howlnmad]

in the beginning of my gluten-free diet, my reaction time (causing the big D) was almost immediate.  like i licked my fingers while re-heating 'regular' food for the kids and BOOM 5-15 min later i was running to the bathroom.  now that i am a few years in, it takes 2 days to get the full on reaction.  it will start sneaking up on me within 12 hrs i will get a headache.  then all my joints hurt, pain under ribcage, severe fatigue, cranky mean irritable.  i actually notice when i start feeling bad now that i normally feel so good.  when i was very damaged and sick, i felt bad all the time so didn't really notice when i felt sick-er.  the only thing i noticed was the D.  if that makes any sense    now that i DON'T have a headache ALL THE TIME i notice when i get one.....

 

nope, the grill won't burn off the gluten.  unless you have a grill that can do, like, 650 F.  i use tinfoil when i have to grill on a un-dedicated grill.  i have a little one for me when i'm home that has never touched gluten.  also, good call on the hand sanitizer - my first camping experience i was sick as a dog and couldn't figure out why!!  now it's soap & water  

What if your husband takes a torch and scrubs and burns the grates off and the inside. Can you use the grill then?

[kareng]

What if your husband takes a torch and scrubs and burns the grates off and the inside. Can you use the grill then?

We just buy new grates every year or two. They aren't expensive at the hardware store.

You could torch and scrub and that would probably work. If the grates are small enough, you could put them in a self cleaning oven and turn it on the clean cycle.

[notme]

What if your husband takes a torch and scrubs and burns the grates off and the inside. Can you use the grill then?

ahhh!  creeper!!  lolz - yes, my husband did that  but i was hesitant to suggest it because not everybody has cast iron grates and is handy with a torch.  also, we 'reseasoned' our cast iron pans by putting them in the oven on the self-clean cycle.  seems to have worked. or we maybe never cooked anything with gluten in them??  

 

i like the replacing the grates, karen, i am just married to a stubborn man!  

[howlnmad]

ahhh!  creeper!!  lolz - yes, my husband did that  but i was hesitant to suggest it because not everybody has cast iron grates and is handy with a torch.  also, we 'reseasoned' our cast iron pans by putting them in the oven on the self-clean cycle.  seems to have worked. or we maybe never cooked anything with gluten in them??  

 

i like the replacing the grates, karen, i am just married to a stubborn man!  

I probably should not have posted about the torch and scrubbing with a wire brush.

I like the idea of buying $$$$$ new grates too.

[kareng]

ahhh!  creeper!!  lolz - yes, my husband did that  but i was hesitant to suggest it because not everybody has cast iron grates and is handy with a torch.  also, we 'reseasoned' our cast iron pans by putting them in the oven on the self-clean cycle.  seems to have worked. or we maybe never cooked anything with gluten in them??  

 

i like the replacing the grates, karen, i am just married to a stubborn man!  

 

We just get something like this.  My hub would think his time was worth more than the $20 to replace the grates. 

 

Open Original Shared Link

 

When we travel and want to use a grill at the hotel or condo, we get some disposible ones from Walmart.  The ones I get have ridges &  small slits oin the bottom to let the grease out.  You open them up.   My hub positions them on the dirty grill and opens the holes that are between the dirty grates.  Keeps the food off the grate. Couldn't find the exact kind to show you.  They are 3 for about $4. 

[notme]

we take the little grill with us when we travel, also.  i will look for those disposable ones  great idea in a pinch!

[JamieRmusic]

May I ask how long you have been affected by gluten? It can take a long time for your body to recover. If it has gone over a long period, i.e longer than a year then the recovery can be everything from a few months to a year+. For my it has been 9 months and I'm still recovering. Probably another x months before things go back to normal. Just gotta be a trooper and hang in there!

[morvenite]

I want to thank everyone who has posted on this topic for their comments and suggestions. As suggested, a couple of weeks ago I adopted a dairy free protocol and was already to declare "mission accomplished" .......until today !! There definitely seemed to be an improvement in the number of D days, but then "wham" again today. So, guess I'll have to be even more vigilant about the Gluten content of foods eaten in tiny amounts and try to sort out what's causing the problem. It sure doesn't help that the reaction time (as reported here) seems to vary substantially (maybe even on a personal basis).

 

I'm also wondering if anyone else has had any experience with proton pump inhibitors. I've been on one for about 2 years, roughly the same length of time I've had "D" issues. Maybe I should start a new topic about this.

[anti-soprano]

I'm glad to hear that you're feeling better.  Give it some time, you'll figure it out.  Sorry I can't help you with the proton pump inhibitor.  I don't really know what that is/does.  Ignorance is bliss, I'm sure 

 

I hope you continue to improve!!!