When Does The Exhaustion Stop?

[tka]

Diagnosed 6 months ago.  Glutened a few times since then.  When does the exhaustion stop?  I thought it was getting better, but seems I can't handle any kind of extra stress.  So frustrating!  I think my  boss thinks I'm a wimp.  Blood work shows I'm still low in vitamin D.  Sorry to complain.

[cyclinglady]

Hey, it takes lots of time to heal.  Reports indicate it takes up to three years to heal especially if you are old (like me) or have severe damage.  Everyone has different symptoms and different healing times.  

 

You may need to brush up on all the requirements of celiac disease.  Were you glutened at home or at a restaurant?  You may, like me, want to avoid eating out until you are feeling better.  

 

Besides, being low in Vitamin D, are you anemic?  How's your thyroid?  Both anemia and hypothyroid can cause extreme fatigue.  I'm just into this lifestyle less than one year and many of my symptoms are now under control (anemia and thyroid stable), but it took almost a year!  

 

The medical world is discovering that celiac affects even your brain!  So, your ability to handle stress should improve if you stick to the diet.  

 

Here's a link to the newbie section in case you are interested!

 

Welcome!  

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[tka]

Hey, it takes lots of time to heal.  Reports indicate it takes up to three years to heal especially if you are old (like me) or have severe damage.  Everyone has different symptoms and different healing times.  

 

You may need to brush up on all the requirements of celiac disease.  Were you glutened at home or at a restaurant?  You may, like me, want to avoid eating out until you are feeling better.  

 

Besides, being low in Vitamin D, are you anemic?  How's your thyroid?  Both anemia and hypothyroid can cause extreme fatigue.  I'm just into this lifestyle less than one year and many of my symptoms are now under control (anemia and thyroid stable), but it took almost a year!  

 

The medical world is discovering that celiac affects even your brain!  So, your ability to handle stress should improve if you stick to the diet.  

 

Here's a link to the newbie section in case you are interested!

 

Welcome!  

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Not anemic.  Thyroid ok now.  Glutened at Thanksgiving even after me fixing almost everything.  I have reverted to eating mostly at home.  I feel like I was glutened one day last week, but don't know what it was.  I went back and checked everything and couldn't find anything obvious.  One possibility may be my 94 year old mother in law's new caregiver.  I went over everything with her, but suspect she may have used my pan or cross contaminated some of my food even though I have all of mine labeled.  I'm just frustrated.  Before the glutening in November, I thought things were starting to get better.  My energy was up some.  My B12 is within limits but I am taking some anyway.  I had not had a sinus infection for 6 months and have one of those now too.  My hair is falling out again too.  I don't have anxiety like some, but depression and crying fits are always right under the surface.  I ached sooo badly for a while, but that is better the last two days, so maybe it's settling down again.  I hope so.  Thanks for responding.

[cyclinglady]

Sounds like you are getting glutened over and over.  It's hard to make progress that way, but it does seem that you are improving a bit!  Perhaps you can review the kitchen procedures again with your mother's caregiver.  Maybe, you can do without (e.g. mayonnaise jars and double dipping after touching bread).  

 

When I live at my parent's house during vacations (about 8 weeks/year, I just skip all condiments and anything else that could get cross contaminated.  I also put my gluten free kitchen stuff in a bin that's kept in my room.  I also keep some emergency food there as well.  No way for someone to accidentally use my stuff even though it's clearly labeled with a sharpie.  I only eat out of fresh bags of chips, etc. since I can't trust the kids from eating a sandwich and then reaching into a previously opened bag.  You tell them, but they forget!  My husband and I are always the first to get served and I supervise all the food prep.  My parents are pretty good about cooking gluten-free dinners.  For breakfast and lunch, everyone's on their own and that's typically gluten-free soup and sandwiches (gluten and gluten-free).  

 

Finally, I wash my hands like crazy! 

 

Maybe these tips will help you prevent cross contamination in your own home.  

 

Hang in there!  

[nvsmom]

How okay is your thyroid?  Sub-clinical thyroiditis can occur while testing in the normal range - that happened to me for years. The tests you want to check thyroid function are:

TSH - should be near a one regardless of the lab's range

Free T4 and Free T3 - should be in the 50-75% range of your lab's normal reference range. Do not use T4, T3 , total T4 or total T3 as they aren't nearly as helpful in showing you what is going on.

TPO Ab - should be pretty low

 

Hope you feel better soon!

[tka]

How okay is your thyroid?  Sub-clinical thyroiditis can occur while testing in the normal range - that happened to me for years. The tests you want to check thyroid function are:

TSH - should be near a one regardless of the lab's range

Free T4 and Free T3 - should be in the 50-75% range of your lab's normal reference range. Do not use T4, T3 , total T4 or total T3 as they aren't nearly as helpful in showing you what is going on.

TPO Ab - should be pretty low

 

Hope you feel better soon!

My doctor took these two tests:  TSH w/reflex to FT4   .16    lab range says .4-4.5

                                                    T4, Free                     1.4    lab range says .8-1.8

 

Thanks.

[tka]

Sounds like you are getting glutened over and over.  It's hard to make progress that way, but it does seem that you are improving a bit!  Perhaps you can review the kitchen procedures again with your mother's caregiver.  Maybe, you can do without (e.g. mayonnaise jars and double dipping after touching bread).  

 

When I live at my parent's house during vacations (about 8 weeks/year, I just skip all condiments and anything else that could get cross contaminated.  I also put my gluten free kitchen stuff in a bin that's kept in my room.  I also keep some emergency food there as well.  No way for someone to accidentally use my stuff even though it's clearly labeled with a sharpie.  I only eat out of fresh bags of chips, etc. since I can't trust the kids from eating a sandwich and then reaching into a previously opened bag.  You tell them, but they forget!  My husband and I are always the first to get served and I supervise all the food prep.  My parents are pretty good about cooking gluten-free dinners.  For breakfast and lunch, everyone's on their own and that's typically gluten-free soup and sandwiches (gluten and gluten-free).  

 

Finally, I wash my hands like crazy! 

 

Maybe these tips will help you prevent cross contamination in your own home.  

 

Hang in there!  

Hadn't thought about the chips bag.  I don't eat them often, but will have to watch that.  I may need to put my utensils and pans in a totally different area.  I have told her, but haven't marked the frying pans.  I have my own toaster, pans, utensils, and plastic storage containers.  I label most things in the fridge.  I had to stop trying to cook things for everybody else because I had a tendency to test things without thinking.  They just have to eat what I eat.  But I do sometimes cut things up for my mother in law.  May have to cut that out too.  Two questions...husband has a mustache.  Could that be a problem for me?  I know it sounds silly.   I use the same silverware as everyone else.  Could that be a problem?

[anti-soprano]

I know you're not completely new at this, but have you checked the things that might be making it into your mouth that aren't food? Lotion, hand sanitizer, shampoo, dental floss, mints/gum.  It's winter and we're all trying to avoid colds.  This time last year I glutened myself on an almost daily basis for about three weeks before I read the ingredients on the B&BW hand sanitizer I was using. The mysterious gluten symptoms disappeared when I discontinued use.  I also looked at a travel shampoo that I've used in the past just TODAY.  It has wheat in it. I for sure used in the past few months, but I don't think I got sick from it. Thank God it didn't get in my mouth!

 

Regarding the fatigue, I can tell you it gets better.  I remember being at both 6 and 9 months thinking that I was always tired.  The better days return little by little.  I know it is very frustrating when you're in the middle of it.  Hang in there!

 

Shellie

[anti-soprano]

I don't think the mustache or silverware are a problem as long as they are clean.  Does you're husband drink beer?  Have you read posts on beer kisses??

[tka]

I don't think the mustache or silverware are a problem as long as they are clean.  Does you're husband drink beer?  Have you read posts on beer kisses??

Doesn't drink beer and tries to be careful if he's ingested gluten.  He loves ribs and those worry me a bit, but he tries to clean it out well .  You know, I have tried to keep all of my soap, shampoo, makeup, etc. gluten free, but you caused me to think about something...I teach and the soap at school I have no clue about.  I need to remedy that.  I'll take some of mine from home to school.  Thanks much!

[tka]

I know you're not completely new at this, but have you checked the things that might be making it into your mouth that aren't food? Lotion, hand sanitizer, shampoo, dental floss, mints/gum.  It's winter and we're all trying to avoid colds.  This time last year I glutened myself on an almost daily basis for about three weeks before I read the ingredients on the B&BW hand sanitizer I was using. The mysterious gluten symptoms disappeared when I discontinued use.  I also looked at a travel shampoo that I've used in the past just TODAY.  It has wheat in it. I for sure used in the past few months, but I don't think I got sick from it. Thank God it didn't get in my mouth!

 

Regarding the fatigue, I can tell you it gets better.  I remember being at both 6 and 9 months thinking that I was always tired.  The better days return little by little.  I know it is very frustrating when you're in the middle of it.  Hang in there!

 

Shellie

Gonna check the lotion my dermatologist gave me. .....  It's ok....cerave.

[cyclinglady]

I do make noodles for my gluten eating daughter most mornings, but it's all made in a separate pot, colander, wooden spoon and I wash them separately from the gluten-free items.  I buy her lots of pre-packaged foods to take for her lunch and we'll stop by a restaurant for a treat every once in a while.  I allow her to eat Cheerios too, but with a separate bowl.    I control the kitchen 95% of the time.  She has not glutened me yet!  I think it's because we have been careful her entire life since my husband is gluten-free also.  

 

Our dinners have been gluten-free for years.  It just makes it easier if everyone is on board, but as much as my daughter enjoys gluten-free pasta, she adores gluten pasta more!

 

The silverware should not be a problem, but again, I do wash those items that have been in contact with gluten separately.  I confess that we each use a different type of glass.  First, it cuts down on washing, but secondly it insures that I won't accidentally ingest gluten from a not quite clean cup.  This could occur at my parent's house. 

 

I think you'll figure it out!  Let's hope for that "light-bulb" moment to happen soon!

[nvsmom]

My doctor took these two tests:  TSH w/reflex to FT4   .16    lab range says .4-4.5

                                                    T4, Free                     1.4    lab range says .8-1.8

 

Thanks.

That is pretty okay. Your free T4 looks great.

 

I'm not sure what "TSH w/reflex to FT4" is.

[anti-soprano]

Even though I have checked my hand soaps, I haven't come across one that contains gluten.  I wasn't sure how prevalent gluten would be in hand soaps, so I looked it up.  Turns out you're right to be suspicious! 

Open Original Shared Link

[NoGlutenCooties]

 I use the same silverware as everyone else.  Could that be a problem?

 

If anyone ever bakes in your kitchen with regular flour it is a good idea to rinse off the silverware before you use it.  Crumbs and flour dust can settle into the silverware drawer.

[IrishHeart]

Even though I have checked my hand soaps, I haven't come across one that contains gluten.  I wasn't sure how prevalent gluten would be in hand soaps, so I looked it up.  Turns out you're right to be suspicious! 

Open Original Shared Link

 

I just want to say: It may be present, but it should be noted that the article also says:

 

"The good news for people with celiac disease is that soap containing gluten shouldn't cause any problems unless you ingest it. It can't be absorbed through the skin by contact " 

 

Really, the nearly miniscule amount of the intact protein that may possibly be in the soap and then, possibly on the hands after rinsing off the soap with water and then possibly being transferred somehow into the stomach...is nothing I would ever worry about. I even use shampoo with hydrolyzed wheat protein in it sometimes. Nothing to worry about, unless you have a contact wheat allergy in addition to celiac. That's not just me saying this. It's what the celiac specialists and dieticians also say, based on the science explaining how the protein is broken down.

 

The "getting glutened" thing is the culprit, most likely.

I know when I was hit a few times, it just made me very tired, my hair fell out, etc. and I took a few weeks to rebound.

 

Hang in there. 

[anti-soprano]

Somehow, I always seem to get things in my mouth...     I checked Method hand soap because I got a bit of a cleaning product in my mouth when, apparently, full contact cleaning my bathroom.  I went right to the sink, got some soap and put it....oops- have to call Method right away!  The hydrolyzed wheat protein is what got me in the hand sanitizer.  That was going into my mouth on almost a daily basis for a few weeks.  Although, it does seem less likely that you would have enough hand soap left on your hands after rinsing with water!  

 

I think I'm just a little....special.

[IrishHeart]

Somehow, I always seem to get things in my mouth...     I checked Method hand soap because I got a bit of a cleaning product in my mouth when, apparently, full contact cleaning my bathroom.  I went right to the sink, got some soap and put it....oops- have to call Method right away!  The hydrolyzed wheat protein is what got me in the hand sanitizer.  That was going into my mouth on almost a daily basis for a few weeks.  Although, it does seem less likely that you would have enough hand soap left on your hands after rinsing with water!  

 

I think I'm just a little....special.

 

well, you are special   of course, because you're wonderful YOU.....

but maybe you need to stop putting your hands in your mouth?  

 

Hand sanitizer is not as effective as soap and water anyway, 

 

Barbara Almanza, an associate professor at Purdue University who teaches safe sanitation practices to workers, came to an interesting conclusion. She notes that the research shows that hand sanitizers do not significantly reduce the number of bacteria on the hand and in some cases may potentially increase the amount of bacteria on the hand. 

Open Original Shared Link has shown that plain soaps are just as effective as antibacterial soaps in reducing Open Original Shared Link. In fact, using consumer antibacterial soap products may increase bacterial resistance to Open Original Shared Link in some bacteria

 

Open Original Shared Link

 

and that's about as far as we should probably stray off the original topic, I reckon,   

[livinthelife]

I only eat out of fresh bags of chips, etc. since I can't trust the kids from eating a sandwich and then reaching into a previously opened bag.  You tell them, but they forget!  

 

I've never even thought of this. Wow. Talk about a lightbulb. I keep a food journal and keep coming back to my favorite guilty pleasure - jalapeño kettle chips - making me sick. I must've read the ingredients a million times. Maybe even a million and a half.

 

I love this site!

 

And as far as your exhaustion goes, I wish I had a great answer. I'm two months in and, for example, after a weekend of truly resting/sleeping late, I'm so much better Monday but by Tuesday evening I'm wiped out and feel like I could take Wednesday off. I've just learned the value of rest and have told my family I just have to lie down. It's as important as anything for your body to heal.

 

We'll just keep telling each other IT GETS BETTER AND BETTER AND BETTER!!!!

[tka]

I've never even thought of this. Wow. Talk about a lightbulb. I keep a food journal and keep coming back to my favorite guilty pleasure - jalapeño kettle chips - making me sick. I must've read the ingredients a million times. Maybe even a million and a half.

 

I love this site!

 

And as far as your exhaustion goes, I wish I had a great answer. I'm two months in and, for example, after a weekend of truly resting/sleeping late, I'm so much better Monday but by Tuesday evening I'm wiped out and feel like I could take Wednesday off. I've just learned the value of rest and have told my family I just have to lie down. It's as important as anything for your body to heal.

 

We'll just keep telling each other IT GETS BETTER AND BETTER AND BETTER!!!!

You guys are all so great!  I thought I was really humming right along with my gluten-free practices, but you've given me a couple of other things to think about now.  I definitely need to redo the chips bag practices and had not thought about washing the dishes, or drying them for that matter, separately.  Thanks so much!  Still struggling, but was able to go hiking a bit with my husband yesterday for the first time in months.  Was shot for the rest of the day, but it felt so good to get out.