Feeling frustrated and impatient

[Fbmb]

Hi guys! I messaged cyclinglady yesterday but thought of reaching out to all of you for some support. I'm almost 5 months into this thing. My stomach is better. I rarely feel bloated. I rarely have any stomach pain at all. It wasn't terrible before, but I definitely notice a difference now. I'm about 15 lbs lighter. I don't look pregnant when I go to bed. That said, I'm not 100% and I notice that I have good days and iffy days. For the past week or so I have noticed that my belly is kinda off in the mornings. Loose stool mostly. It's formed, but not ideal. But if I go in the afternoon it's usually totally fine. First I was panicked about refractory, but cyclinglady talked me off that cliff. My TTG-iga went from >100 to 12 in 2 months. But I was worried that somehow my body quit responding to my diet. But I think that's highly unlikely and that I'm being a little dramatic. I'm trying to figure out why my digestion seems wonky overnight. I snack at night. Gluten free but I do snack. Sometimes I'll have a bowl of cereal. Usually I have popcorn. And I'm wondering if the popcorn is doing it. Seems like a high fiber dinner or snack makes me funny. I don't know. Nothing seems consistent because it's on and off.

is this normal? I expect to feel 100%. I feel 100% in the afternoon. But my overnight digestion isn't. Why? Am I still healing? Does it take a while? I went gluten free on November 8. Am I being too impatient? I'll have my TTG iga checked again in July and I'm not going sooner. I'm a hypochondriac (for real) and I don't need to go down that spiral again. Been there too many times.

i would think if it were gluten or my celiac I would feel "off" all day, or i would experience loose stools at other times than just in the morning. And I don't. So maybe it's something I'm doing at night. I just can't figure out what because it's not consistent. And sometimes when I eat popcorn, for example, I'm ok. Then when I don't, I'm not. So strange. 

Regardless, I'm frustrated.

[GFinDC]

Hi FBMB,

Please join the club of people who didn't recover in 5 minutes.  We have a lot of members and they all pay dues!  Your dues are an extended course in patience.  Dues are paid daily for an indeterminate time.

There was a study a while back of children on the gluten-free diet.  A good precentage of them had not totally healed after 18 months on the gluten-free diet.  Some had though.  Maybe some smart person will post a link to that study.

I suggest you change your snacking habits.  Try something different to snack on.  I know I had trouble with popcorn early in the gluten-free diet.  It is hard to digest.  Whole corn is hard to digest for most people.  That's why they make hominy.  You may be able to eat popcorn later on.  Also consider what  you are eating at all times.  Your symptoms can be delayed by hours perhaps.

Fairly often we compare the recovery process to a rollercoaster ride.  There can be ups and downs in an apparently illogical manner.   The good news is you really are sick, so you are not a hypchondriac anymore!

Now lets see, you are eating cereal, which is a refined carb generally, and hard for our messed up guts and flora to handle.  What other processed foods are you eating?  If you put all the processed foods you are eating in a pile on the kitchen counter, is it bigger than the pile of whole foods you are eating?

Recovery from celiac disease is all about diet, gut flora, and patience.   Maybe a few vitamins thrown in here and there.   The tricky things are additional food intolerances that might crop up.  They can be confusing and cause many symptoms themselves.  The way to find them is with an elimination diet.  Put on your thinking cap and start investigating your diet.  Remember processed foods are your enemy.

[Ennis-TX]

If eating carbs before bed this could be the issues, your system slows at night while you sleep, carb are processed more slowly going through your gut while your lying down. There is a chance your gut bacteria could be getting a bit more active and processing them, fermenting, or just breaking them down producing gas, enzymes, etc. Not moving so much in your sleep to keep stuff a bit more mobile could lead to irritation, gas bubbles, etc. NOTE this is all just guessing.  You could be snacking on something that contains gluten or is CCed. Or it could be something else,

My suggestion is try fasting and sleeping or just having a bit of plain protein or a glass of almond milk before bed.  I personally take a protein powder before bed. Wish you luck.

[Fbmb]

19 minutes ago, GFinDC said:

Hi FBMB,

Please join the club of people who didn't recover in 5 minutes.  We have a lot of members and they all pay dues!  Your dues are an extended course in patience.  Dues are paid daily for an indeterminate time.

There was a study a while back of children on the gluten-free diet.  A good precentage of them had not totally healed after 18 months on the gluten-free diet.  Some had though.  Maybe some smart person will post a link to that study.

I suggest you change your snacking habits.  Try something different to snack on.  I know I had trouble with popcorn early in the gluten-free diet.  It is hard to digest.  Whole corn is hard to digest for most people.  That's why they make hominy.  You may be able to eat popcorn later on.  Also consider what  you are eating at all times.  Your symptoms can be delayed by hours perhaps.

Fairly often we compare the recovery process to a rollercoaster ride.  There can be ups and downs in an apparently illogical manner.   The good news is you really are sick, so you are not a hypchondriac anymore!

Now lets see, you are eating cereal, which is a refined carb generally, and hard for our messed up guts and flora to handle.  What other processed foods are you eating?  If you put all the processed foods you are eating in a pile on the kitchen counter, is it bigger than the pile of whole foods you are eating?

Recovery from celiac disease is all about diet, gut flora, and patience.   Maybe a few vitamins thrown in here and there.   The tricky things are additional food intolerances that might crop up.  They can be confusing and cause many symptoms themselves.  The way to find them is with an elimination diet.  Put on your thinking cap and start investigating your diet.  Remember processed foods are your enemy.

Your first sentence made me giggle  I definitely don't eat very many processed foods. I did at first because I didn't know what else to eat. Usually I snack on almonds or pistachios, cheese, fruits, veggies. But at night when I'm watching TV I will bust out the chips and popcorn. I'm a salty snack person. I try to stay away from corn in general because I know I have issues with some corn. Like if I eat corn Chex I am bothered a lot. I honestly don't love gluten free crackers so I don't eat them hardly at all. I think that tonight I'm going to not snack after dinner and see how I feel tomorrow. Since it's only in the morning it has to be something I'm eating at night or later in the day. Because in the afternoons I feel totally fine. I don't think I'm being glutened because I'm so careful. I never eat out. I research everything before I eat it - every brand, everything. Grocery shopping with me is a chore. So I think it's some kind of intolerance to something. Or my gut is still healing and I'm just not where I need to be yet. 

[Fbmb]

23 minutes ago, Ennis_TX said:

If eating carbs before bed this could be the issues, your system slows at night while you sleep, carb are processed more slowly going through your gut while your lying down. There is a chance your gut bacteria could be getting a bit more active and processing them, fermenting, or just breaking them down producing gas, enzymes, etc. Not moving so much in your sleep to keep stuff a bit more mobile could lead to irritation, gas bubbles, etc. NOTE this is all just guessing.  You could be snacking on something that contains gluten or is CCed. Or it could be something else,

My suggestion is try fasting and sleeping or just having a bit of plain protein or a glass of almond milk before bed.  I personally take a protein powder before bed. Wish you luck.

That all makes sense about the carbs. I definitely eat carbs in the evenings, more so than during the day. I really don't think I'm being CC'd. But it's a worry. I just don't know how it would be happening. I think tonight I just won't snack and I'll see how I feel. 

[Fbmb]

40 minutes ago, GFinDC said:

Hi FBMB,

Please join the club of people who didn't recover in 5 minutes.  We have a lot of members and they all pay dues!  Your dues are an extended course in patience.  Dues are paid daily for an indeterminate time.

There was a study a while back of children on the gluten-free diet.  A good precentage of them had not totally healed after 18 months on the gluten-free diet.  Some had though.  Maybe some smart person will post a link to that study.

I suggest you change your snacking habits.  Try something different to snack on.  I know I had trouble with popcorn early in the gluten-free diet.  It is hard to digest.  Whole corn is hard to digest for most people.  That's why they make hominy.  You may be able to eat popcorn later on.  Also consider what  you are eating at all times.  Your symptoms can be delayed by hours perhaps.

Fairly often we compare the recovery process to a rollercoaster ride.  There can be ups and downs in an apparently illogical manner.   The good news is you really are sick, so you are not a hypchondriac anymore!

Now lets see, you are eating cereal, which is a refined carb generally, and hard for our messed up guts and flora to handle.  What other processed foods are you eating?  If you put all the processed foods you are eating in a pile on the kitchen counter, is it bigger than the pile of whole foods you are eating?

Recovery from celiac disease is all about diet, gut flora, and patience.   Maybe a few vitamins thrown in here and there.   The tricky things are additional food intolerances that might crop up.  They can be confusing and cause many symptoms themselves.  The way to find them is with an elimination diet.  Put on your thinking cap and start investigating your diet.  Remember processed foods are your enemy.

Am I technically still early on in the diet at almost 5 months? Did you experience ups and downs like this at 5 months? And if I do eat foods that seem to bother me, as long as they don't contain gluten, is it hurting my progress? I think that's my fear. That if I have a dairy issue if I eat dairy (just an example) I will slow down my healing or that I will cause some immune response to the dairy. Or if I eat corn and corn bothers me is it damaging my intestine like gluten did? I spend so much time analyzing my gut. It's exhausting. 

[Jmg]

4 hours ago, Fbmb said:

I spend so much time analyzing my gut. It's exhausting. 

If you're anything like me you're probably stressing yourself out hyper analysing your current condition. Take a step back and try to relax. Accept that recovery won't be a straightforward upward curve, but that even when gluten free there will be good days and less good days. 

Drink plenty of water, that will help reduce snack urges. Also try and eat foods that have a low GI index: Open Original Shared Link Usually when you're well hydrated and eating foods that dont spike blood sugar food cravings will dissipate, although you may need the salt, that could be your body telling you. But most of all...

 

[GFinDC]

On 3/26/2017 at 11:16 AM, Fbmb said:

Am I technically still early on in the diet at almost 5 months? Did you experience ups and downs like this at 5 months? And if I do eat foods that seem to bother me, as long as they don't contain gluten, is it hurting my progress? I think that's my fear. That if I have a dairy issue if I eat dairy (just an example) I will slow down my healing or that I will cause some immune response to the dairy. Or if I eat corn and corn bothers me is it damaging my intestine like gluten did? I spend so much time analyzing my gut. It's exhausting. 

I definitely went for the monster roller coaster ride myself.  I ended up doing elimination diets multiple times over the years to identify problem foods beyond gluten.  And yes, you are a bright and shiny newbie at 5 months!   Usually we think of children as healing faster than adults.  After all, they do other things faster than adults too, like running into walls, and pissing off parents.

Remember you are trying to heal your gut, and that means giving it an easier job than normal to reduce irritation and the work of digestion.  Stopping the immune response is important, but healing the physical damage and also restoring a healthy gut flora is important too.  It's not a simple thing and the gotchas are many.  That's why a whole foods diet with no or very few processed foods is helpful, as it eliminates many sources of gluten contamination and also carbs and sugars that feed bad bacteria in the gut.  Healing the gut allows more minerals and vitamins to be absorbed which also aids the healing process.

Five months was the very beginning of my healing journey.  YMMV, but mine was more on the order of 5 to 7 years, although some of my health issues weren't (I don't think) directly related to gluten.  I would guess I am on the slow side of things recovery wise.  But it did happen, just not as fast I would of liked.

Open Original Shared Link

Even after a year on a gluten-free diet, nearly 20 percent of children with celiac disease continue to have intestinal abnormalities (enteropathy) on repeat biopsies, reports a study in the Journal of Pediatric Gastroenterology and Nutrition, official journal of the European Society for Paediatric Gastroenterology, Hepatology and Nutrition and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. The journal is published by Wolters Kluwer.

 

[Fbmb]

On 3/27/2017 at 9:36 PM, GFinDC said:

I definitely went for the monster roller coaster ride myself.  I ended up doing elimination diets multiple times over the years to identify problem foods beyond gluten.  And yes, you are a bright and shiny newbie at 5 months!   Usually we think of children as healing faster than adults.  After all, they do other things faster than adults too, like running into walls, and pissing off parents.

Remember you are trying to heal your gut, and that means giving it an easier job than normal to reduce irritation and the work of digestion.  Stopping the immune response is important, but healing the physical damage and also restoring a healthy gut flora is important too.  It's not a simple thing and the gotchas are many.  That's why a whole foods diet with no or very few processed foods is helpful, as it eliminates many sources of gluten contamination and also carbs and sugars that feed bad bacteria in the gut.  Healing the gut allows more minerals and vitamins to be absorbed which also aids the healing process.

Five months was the very beginning of my healing journey.  YMMV, but mine was more on the order of 5 to 7 years, although some of my health issues weren't (I don't think) directly related to gluten.  I would guess I am on the slow side of things recovery wise.  But it did happen, just not as fast I would of liked.

Open Original Shared Link

Even after a year on a gluten-free diet, nearly 20 percent of children with celiac disease continue to have intestinal abnormalities (enteropathy) on repeat biopsies, reports a study in the Journal of Pediatric Gastroenterology and Nutrition, official journal of the European Society for Paediatric Gastroenterology, Hepatology and Nutrition and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. The journal is published by Wolters Kluwer.

 

My belly is still not right. I spend too much time looking at the Bristol stool chart. And if it's not where it's supposed to be according to that chart I practically have a meltdown. I'm guessing my anxiety is contributing to this. 

I was going to have my TTG checked again. I did have it checked in January and it had gone down significantly. My GI told me that we would check again in 6 months. Should I just wait until then? I'm positive that I'm not eating gluten but I'm terrified of refractory. Can that suddenly happen after a person responds as well as I was?

[cyclinglady]

Wait.  Wait for the six months to pass before getting re-tested.    It takes time to heal.  Time to master the diet.  Time to recover from a mishap (it happens to the best of us).  How much time?  Give yourself two years before freaking out.  Seriously.  

You have a better chance dying from plain old heart disease than get refractory celiac disease.  So, direct your efforts to driving safely, exercise, no smoking, easy on the alcohol,  and make healthy food choices!  

Here are the stats to prove it!  

Open Original Shared Link

But wait, heart disease and cancer were both on the same line....here is more about refractory which is RARE.  Most folks even diagnosed with it were found not to be diet compliant when they thought they were.  So, most refractory statistics are way off.  

Open Original Shared Link

Please consider asking your doctor for referral for a support group.  It can be hard to deal with an AI issue.  I think it might help you learn to deal with your diagnosis and provide tips on how to handle your anxiety.  Even medication might help.  Limit your time on the internet and enjoy the good things in journey life!  

Hugs!  

[icelandgirl]

Hi Fbmb and big ((((hugs))))!

I'm sorry about your frustration, but I also totally get it.  It took me a year to feel mostly decent and within that year I would have setbacks where it would seem for a time that things were getting worse.  I spent a lot of time worrying and panicking,if I'm to be honest, but things would improve again.  Now, at 3 years since diagnosis, I feel much better and can tell that things are continuing to improve for me.

Getting your Ttg down that much in 2 months is amazing, so great job!  I would also say to wait to have them rechecked.  

Do you keep a food diary at all?  I started one at about 6 months in due to continuing issues and it has really helped me to be able to figure out foods that just really bothered me.  I gave up all dairy and soy for a time.  I've been able to get back some dairy, but still avoid soy.  Sometimes, writing down what you eat and any symptoms that follow can really help pinpoint the problem.

I wish you lots of luck in feeling better!

[notme]

32 minutes ago, icelandgirl said:

Do you keep a food diary at all?  I started one at about 6 months in due to continuing issues and it has really helped me to be able to figure out foods that just really bothered me.  I gave up all dairy and soy for a time.  I've been able to get back some dairy, but still avoid soy.  Sometimes, writing down what you eat and any symptoms that follow can really help pinpoint the problem.

this is good advice & it worked for me (i had to do it many different times as i am a slow learner) because, you really don't remember every single thing that goes into your mouth (at least i don't!!  lolz)  it's been over 6 years for me and i am still improving.  sometimes, i need to adjust my diet to eliminate *a particular thing* for a little while, then if i don't go nuts with it, i can usually eat it occasionally (chocolate comes to mind..........    le sigh.........) in the beginning, i couldn't eat dairy, raw veggies, anything with soy in it <soy is still my enemy, but it doesn't cause celiac damage, my intestines just hate it, but i still eat it, just avoid it as much as possible) but i've been able to add dairy back (in moderation) raw veggies (again, as long as i don't go nuts with it) - lots of stuff i've eliminated and been able to add back.  trial and error (you're in the 'error' part - get back in 'trial' lolz)  experiment with the times that you eat certain things (as others have said) if i want to eat yogurt, for me, i have to eat it in the afternoon, preferably early but certainly before dinner!  otherwise, i might as well just spoon it into the commode, hahaha. 

also, my celiac was undiagnosed for 25 years (trigger was the pregnancy/birth of my son) so, the damage that i have/had was significant.  you are now eating the correct diet, so it stops further damage, but if your intestines need to heal, certain things are going to irritate them for a while.  YES you are one big science project, isn't it fun?  lolz - hang in there, we all had to figure this stuff out individually (and still making adjustments!)  because, there isn't a one-size-fits-all.

welcome to the club you never wanted to join

[Ennis-TX]

DO not be overly paranoid about damage, I know I was for the years I would get minor issues, maybe a major poisoning once or twice a year. I feared I would still have major damage and villi blunting, I felt better but still had a bunch of food issues some went away other surfaced scared me more when I had other complications show up. But alas after 3 years gluten-free I got another scope, most of my intestines had healed, doctor said I was doing great on my diet. I just had inflammation still present in my intestines.  I mess up sometimes, with very minor CC and I post about when it happens, yet since I avoided major contamination but a few times a year when they snuck up on me, and I never ate it intentionally I still managed to keep it under control enough for alot of the damage to heal. I am still on the road to recovery, dealing with a few other complications that got diagnosed. I am finding some foods are no longer a problem, soy letchin does not cause me issues now, anything else soy does . I no longer have to avoid stuff with Red 40, and a few other random ingredients that used to send me over the deep end.  Hoping this time next year I might be able to eat some meats, and egg yolks without issues at all, right now they still give me issues but finding I can stomach a bit of yolk now and larger amounts of fish and crab.   Just goes to show how it will slowly improve if you stick to the diet to the best humanly possible.