Sick for over a month

[troesler]

Hello,

First time posting here.  I was diagnosed back in January of this year (2018) with Celiac.  At that point I was not having any symptoms from eating gluten.  My Celiac was found through blood tests after I discussed my family history of Celiac (2 aunts) along with the fact I had been diagnosed with Hashimotos for about a year and was still experiencing abnormal fatigue despite my thyroid levels doing well.  At that point my Dr ran blood tests for a host of things and we found the Celiac and allergies to dairy and peanuts although these allergies are on the low side.  I have eaten dairy and peanuts my whole life.  I always suspected I had a slight dairy allergy because after eating a lot of it I would get upset stomach and have to use the bathroom but it was never bothersome enough to stop eating it.  

Once diagnosed in January I went on a gluten free diet although I have been far from perfect.  I have cheated here and there but that was in the beginning when it was still so hard! I have not been strict with cross contamination so I know that might be an issue that I have to fix.  Up until a month ago though, I was not having sickness reactions aside from the usually fatigue I have been battling for years.  

Since the last week in June I have been sick with abdominal cramping and diarrhea.  I initially thought I had gotten E.Coli from a salad I had eaten and my Dr. gave me an antibiotic after 7 days of diarrhea.  My stomach felt better, I was able to eat and I wasn't running to the bathroom anymore but I continued to have D for 3 more days.  Stools got a little better at that point but since that time the D has been off and on along with the stomach aches.  I'll have a good day and then 2 bad and then 2 good and on and on.  

I honestly didn't think it was anything I was eating until I had an ah-ha moment regarding the fact I have eaten the equivalent of 2 boxes of cheerios during this time.  The gluten free label tricked me.  Even that first week (when I thought I had E coli) I was consistently eating them because they are somewhat bland and I didn't want anything heavy on my stomach.  I have since learned that they are not safe for Celiacs despite the gluten free label.  

The last I ate them was last Thursday evening, so almost 4 days.  I am still experiencing the same sick effects and wondering what I need to do to feel better (aside from completely cutting out the Cheerios which I have obviously done).  How long can I reasonably expect to feel like this? I had a normal stool in the middle of the night when I was up with a teething baby and thought I was getting better and then the D started back a few hours later and I've had to pop a bunch of Imodium since getting to work so I can get through the day.  I have been living on Imodium which I know can't be good for me either.   

Also, I take Trinessa Lo birth control.  I've tried to do some research and from what I can tell I think it is safe but I read in another post from someone else on the same birth control that she was told to go off of it because it could be an issue.  Any advice on that?

Lastly, is there a reason why I would all of a sudden start having all of these stomach issues when I wasn't even having them before I was diagnosed.  I'm thinking because I've eliminated almost all gluten, my body has gotten used to it and now if I were to ingest it in large quantities (as with the Cheerios) my body will revolt because it has gotten used to the no gluten and is more sensitive? 

I have an appointment with a functional MD at the beginning of next month and hoping she can help as well but hoping to feel relief sooner than that!

HELP!

[cyclinglady]

2 hours ago, troesler said:

Hello,

First time posting here.  I was diagnosed back in January of this year (2018) with Celiac.  At that point I was not having any symptoms from eating gluten.  My Celiac was found through blood tests after I discussed my family history of Celiac (2 aunts) along with the fact I had been diagnosed with Hashimotos for about a year and was still experiencing abnormal fatigue despite my thyroid levels doing well.  At that point my Dr ran blood tests for a host of things and we found the Celiac and allergies to dairy and peanuts although these allergies are on the low side.  I have eaten dairy and peanuts my whole life.  I always suspected I had a slight dairy allergy because after eating a lot of it I would get upset stomach and have to use the bathroom but it was never bothersome enough to stop eating it.  

Once diagnosed in January I went on a gluten free diet although I have been far from perfect.  I have cheated here and there but that was in the beginning when it was still so hard! I have not been strict with cross contamination so I know that might be an issue that I have to fix.  Up until a month ago though, I was not having sickness reactions aside from the usually fatigue I have been battling for years.  

Since the last week in June I have been sick with abdominal cramping and diarrhea.  I initially thought I had gotten E.Coli from a salad I had eaten and my Dr. gave me an antibiotic after 7 days of diarrhea.  My stomach felt better, I was able to eat and I wasn't running to the bathroom anymore but I continued to have D for 3 more days.  Stools got a little better at that point but since that time the D has been off and on along with the stomach aches.  I'll have a good day and then 2 bad and then 2 good and on and on.  

I honestly didn't think it was anything I was eating until I had an ah-ha moment regarding the fact I have eaten the equivalent of 2 boxes of cheerios during this time.  The gluten free label tricked me.  Even that first week (when I thought I had E coli) I was consistently eating them because they are somewhat bland and I didn't want anything heavy on my stomach.  I have since learned that they are not safe for Celiacs despite the gluten free label.  

The last I ate them was last Thursday evening, so almost 4 days.  I am still experiencing the same sick effects and wondering what I need to do to feel better (aside from completely cutting out the Cheerios which I have obviously done).  How long can I reasonably expect to feel like this? I had a normal stool in the middle of the night when I was up with a teething baby and thought I was getting better and then the D started back a few hours later and I've had to pop a bunch of Imodium since getting to work so I can get through the day.  I have been living on Imodium which I know can't be good for me either.   

Also, I take Trinessa Lo birth control.  I've tried to do some research and from what I can tell I think it is safe but I read in another post from someone else on the same birth control that she was told to go off of it because it could be an issue.  Any advice on that?

Lastly, is there a reason why I would all of a sudden start having all of these stomach issues when I wasn't even having them before I was diagnosed.  I'm thinking because I've eliminated almost all gluten, my body has gotten used to it and now if I were to ingest it in large quantities (as with the Cheerios) my body will revolt because it has gotten used to the no gluten and is more sensitive? 

I have an appointment with a functional MD at the beginning of next month and hoping she can help as well but hoping to feel relief sooner than that!

HELP!

Welcome!

Celiac disease is like a chameleon.   Symptoms wax and wane.  Always changing.  They can get worse after going gluten free.  Even a tiny exposure can set off antibodies that attack your small intestine.  

You are still new.  The gluten free diet has a very steep learning curve.  Consider a few things.  Get follow up testing.  This can help see if you are complying with the diet, if your celiac disease is still active, getting worse or is declining.  

Open Original Shared Link

Because you have Hashimoto’s (like me), I have discovered that by triggering my celiac antibodies with a gluten exposure, it will trigger my thyroid antibodies as well.  It is super important for me to avoid gluten at all costs.  I try to stick to a non-processed foods diet (avoiding even gluten-free processed foods).    This strategy has worked for me.  A recent endoscopy revealed healed villi.  It also showed that I have Autoimmune Gastritis as well.  ?. So, not all gut symptoms are related to celiac disease.  

Keep to the diet.  No cheating.  No eating out until you have MASTERED the diet and are feeling GOOD!  

Soon, you will feel better (takes a year for most because of dietary  mistakes or other intolerances).  Stay the course!  

 

 

[Ennis-TX]

We almost always will have much worse reactions with reintroduction of gluten after eliminating it....even residue or crumbs will cause a severe flare. As to the diarrhea....I can take 4-6 weeks after exposure for it to stop...it takes that long for your antibodies to come down after even just that crumb (I got glutened slightly about 4 weeks ago...so yeah I know). Things that do help firm it up are high potassium intake, and stuff to dry out the stool like coconut flour (I make baked goods with it and use a 1-2 tbsp whisked in with eggs) which absorbs liquid, adds bulk, is high in potassium. Make sure your drinking plenty of liquids and stuff with electrolytes so you do not dehydrate.

Cheerios...not 100% gluten free, and there are the rumored HOT SPOTs of gluten as the oats used are mechanically sorted (literally they use a machine to remove the random wheat grains that get in) that leaves some CC. Another concern is 10% of celiac react to oats regardless.

Dairy....remove it, it will just make your gas and D worse. Dairy requires enzymes produced by the vili in your intestines to break down. Celaic, your villi are destroyed and flattened so you will lack the enzyme to break it down and give you lactose intolerance. You might be able to eat it again in a few months gluten free.

Do try to stick to a whole foods only diet, no eating out. Read the newbie 101 thread as you might have missed a source of contamination in your house like condiment or butter jars, cutting boards, scratched pots, wooden spoons, etc which all should be thrown away.
https://www.celiac.com/forums/topic/91878-newbie-info-101/

Keep a food diary also and record everything you eat....often with a exposure to gluten and a flare up we develop new food intolerance or sensitivities to new foods we used to be fine with. (another reason to stay gluten free)Open Original Shared Link

 

[troesler]

1 hour ago, Ennis_TX said:

We almost always will have much worse reactions with reintroduction of gluten after eliminating it....even residue or crumbs will cause a severe flare. As to the diarrhea....I can take 4-6 weeks after exposure for it to stop...it takes that long for your antibodies to come down after even just that crumb (I got glutened slightly about 4 weeks ago...so yeah I know). Things that do help firm it up are high potassium intake, and stuff to dry out the stool like coconut flour (I make baked goods with it and use a 1-2 tbsp whisked in with eggs) which absorbs liquid, adds bulk, is high in potassium. Make sure your drinking plenty of liquids and stuff with electrolytes so you do not dehydrate.

Cheerios...not 100% gluten free, and there are the rumored HOT SPOTs of gluten as the oats used are mechanically sorted (literally they use a machine to remove the random wheat grains that get in) that leaves some CC. Another concern is 10% of celiac react to oats regardless.

Dairy....remove it, it will just make your gas and D worse. Dairy requires enzymes produced by the vili in your intestines to break down. Celaic, your villi are destroyed and flattened so you will lack the enzyme to break it down and give you lactose intolerance. You might be able to eat it again in a few months gluten free.

Do try to stick to a whole foods only diet, no eating out. Read the newbie 101 thread as you might have missed a source of contamination in your house like condiment or butter jars, cutting boards, scratched pots, wooden spoons, etc which all should be thrown away.
https://www.celiac.com/forums/topic/91878-newbie-info-101/

Keep a food diary also and record everything you eat....often with a exposure to gluten and a flare up we develop new food intolerance or sensitivities to new foods we used to be fine with. (another reason to stay gluten free)Open Original Shared Link

 

Thank you, this is very helpful.  I just wasn't expecting to go from no symptoms if I cheated to overnight being sick for upwards of a month. Probably the wake up call I needed to stop eating so much processed gluten free crap and to eat how I need to be eating.  You'd think with 2 family members with the disease and knowing a lot more out of the gate I would have been more serious about my diet  

Any recommendations on what I can eat while trying to get to a good place? I know fruits, veggies and unprocessed meat BUT I am an awful cook and hate it!  Do you advise staying away from olive oils, spices, dairy free butters for seasoning? I don't know how to eat the way I need to eat without going crazy from eating gross, bland food.  

[troesler]

1 hour ago, cyclinglady said:

Welcome!

Celiac disease is like a chameleon.   Symptoms wax and wane.  Always changing.  They can get worse after going gluten free.  Even a tiny exposure can set off antibodies that attack your small intestine.  

You are still new.  The gluten free diet has a very steep learning curve.  Consider a few things.  Get follow up testing.  This can help see if you are complying with the diet, if your celiac disease is still active, getting worse or is declining.  

Open Original Shared Link

Because you have Hashimoto’s (like me), I have discovered that by triggering my celiac antibodies with a gluten exposure, it will trigger my thyroid antibodies as well.  It is super important for me to avoid gluten at all costs.  I try to stick to a non-processed foods diet (avoiding even gluten-free processed foods).    This strategy has worked for me.  A recent endoscopy revealed healed villi.  It also showed that I have Autoimmune Gastritis as well.  ?. So, not all gut symptoms are related to celiac disease.  

Keep to the diet.  No cheating.  No eating out until you have MASTERED the diet and are feeling GOOD!  

Soon, you will feel better (takes a year for most because of dietary  mistakes or other intolerances).  Stay the course!  

 

 

Thank you cyclinglady, this was helpful as well.  I will be going to the Dr in a few weeks and hoping she will have good recommendations for further testing.  Up until this point I have only been seeing my primary care Dr.  She gave me the diagnosis and I have been feeling well enough to not seek a specialist, until now.  My primary doc was useless though.  At diagnosis she recommended a gluten light OR gluten free diet.  My aunt with Celiac was furious that a Dr would suggest I could go gluten light. I'm excited to see a Dr with more knowledge of the disease. Hopefully one day when I'm feeling better I will be able to introduce food that tastes good back into my diet. This is so hard

[Ennis-TX]

45 minutes ago, troesler said:

Thank you, this is very helpful.  I just wasn't expecting to go from no symptoms if I cheated to overnight being sick for upwards of a month. Probably the wake up call I needed to stop eating so much processed gluten free crap and to eat how I need to be eating.  You'd think with 2 family members with the disease and knowing a lot more out of the gate I would have been more serious about my diet  

Any recommendations on what I can eat while trying to get to a good place? I know fruits, veggies and unprocessed meat BUT I am an awful cook and hate it!  Do you advise staying away from olive oils, spices, dairy free butters for seasoning? I don't know how to eat the way I need to eat without going crazy from eating gross, bland food.  

I use Spicely Organics for various spices and Big Axe Spice (on amazon or their site) for some GREAT blends, but go easy til you heal at first (odd perspective but think of your intestines and their damage like a carpet burned gut....do you want to rub peppers on that?) I like herb seasoned dishes after a gluten exposure nice and easy like a bit of basil, oregano, parsely, etc nice and easy.
You can do simple stews, omelettes, scrambled eggs with veggies and meats (I like to use some processed stuff with them and Butterball and Jennie-O make gluten free turkey sausage/bacon), sheet pan meals and crock pot meals are great for batches (seriously look some up gluten free). Using whole food based ingredients in these is very simple and quick. Snacks look to stuff like Almond Butters (look for just almonds in them), sunbutter, veggie sticks (if they are harsh steam them til super soft or wrap in a paper towel and nuke 1-2mins), fruit slices if sugars are fine for you. Many find simple baked sweet poatoes to be great and easy on the stomach (again if starches and carbs are fine for you)
I cook with coconut oil myself, I use the nutiva one..walmart has them in butter flavored and garlic flavored so you can just use them in the pan like you would butter, sold in a big jar.

To make it really simple Nordicware makes microwave omelette makers, steamers, and grill plates (GET the splatter covers for the round one will save you with clean up), This way you get a new cutting board, knife, measuring cup/mixing bowel and just do it simple for while without having to really jump into the culinary arts or cook much. But honestly I quite enjoy it now days.
I am keto/atkins myself and find avoiding sugars, starches, grains, beans etc. got rid of gas and bloat and helped my other AI disease. So I am very biased with diets. But Look up stuff like Ketosummit of you want this approach.