Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

2 Months Gluten Free & Still.....
0

20 posts in this topic

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 ? 

0

Share this post


Link to post
Share on other sites


Ads by Google:

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 :)

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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 !!

 

 

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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 : )

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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  :)  

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!  :P

0

Share this post


Link to post
Share on other sites

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!  :P

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

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

0

Share this post


Link to post
Share on other sites

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!   :P

 

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

 

http://www.homedepot.com/p/Char-Broil-Pro-Sear-Adjustable-Porcelain-Coated-Steel-Cooking-Grate-14-3-4-to-17-in-long-4984350P/202018231?N=bxde

 

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. 

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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  :D

 

I hope you continue to improve!!!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,092
    • Total Posts
      920,313
  • Topics

  • Posts

    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,122
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined