Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dealing With Celiac

roxanne40

Recommended Posts

roxanne40 Newbie
roxanne40
Posted

I just had my 3 year anniversary of being diagnosed with Celiac Disease. I have a family and I am so tired of dealing with this disease and all of its ramifications on a daily basis. How do I get over this hump? I am gluten free but feel so tired a lot of the time. Do other people feel this way? Any ideas would be helpful.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kbtoyssni Contributor
kbtoyssni
Posted

By tired do you mean emotional or physical fatigue? If it's physical, maybe you still have some underlying health conditions that you haven't discovered yet. If it's emotional, I'd recommend seeing a therapist.

Is your entire family gluten-free? I now live alone. My entire apartment contains no gluten so I don't have a daily struggle with the disease. When I go to visit my parents I constantly have to be thinking about it because there's gluten in the house. I don't think it's too much trouble for an entire family to have gluten-free personal care products and for food to be mostly gluten-free. Maybe have one shelf of gluten food for the other family members. I also wouldn't make gluten food for the rest of the family. If they want it, they can prepare it themselves.

tarnalberry Community Regular
tarnalberry
Posted

part of it depends on how often it's hard to deal with it. if I'm having to go out all the time, I get tired of it too. if I'm just operating under a normal schedule and cooking at home like I prefer to, I hardly notice a difference. adjusting a bit to make it a more normal aspect in your life can help make those things easier. (of course, it depends on the cooperation of those around you - if they're not cooperative, you get to start practicing 'no'. :-/)

Mayflowers Contributor
Mayflowers
Posted
part of it depends on how often it's hard to deal with it. if I'm having to go out all the time, I get tired of it too. if I'm just operating under a normal schedule and cooking at home like I prefer to, I hardly notice a difference. adjusting a bit to make it a more normal aspect in your life can help make those things easier. (of course, it depends on the cooperation of those around you - if they're not cooperative, you get to start practicing 'no'. :-/)

I thought that when you go gluten free your energy returns? I thought the lack of energy is from eating gluten? Some docs believe people shouldn't eat any grains. Our bodies weren't design to eat grains.

Sarah8793 Enthusiast
Sarah8793
Posted
I thought that when you go gluten free your energy returns? I thought the lack of energy is from eating gluten? Some docs believe people shouldn't eat any grains. Our bodies weren't design to eat grains.

At times when I have felt drained, a little closer examination upon my eating habits usually reveals 1 of 2 problems. Not enough protein or not enough complex carbohydrates. I am hypoglycemic also so I have to eat for energy. So I have learned some things about this. Check how many grams of protein you are getting and compare it to the reccomended amount for your weight. If you are getting adequate protein, next check your carbs. Are you eating enough vegetables and fruits and gluten-free carbs like rice etc.? Make sure when you snack you are getting a protein and a carb together. For example, a handful of peanuts with some raisins. Hope this helps!

Sarah

Rikki Tikki Explorer
Rikki Tikki
Posted

To me it's just like I would imagine any chronic condition would be. There are going to be some good days and some not so good days. I think it has probably taken me about 3 years to feel pretty healthy. Is there something going on in your life that is making things difficult now? Are you 100 % sure everything is gluten free?

roxanne40 Newbie
roxanne40
Posted
  • Author
To me it's just like I would imagine any chronic condition would be. There are going to be some good days and some not so good days. I think it has probably taken me about 3 years to feel pretty healthy. Is there something going on in your life that is making things difficult now? Are you 100 % sure everything is gluten free?

I think you hit it right on. There are good days, and bad days. I think I am going through bad days. I think I was feeling really good and then I started a new medication for something else and perhaps that is what is bringing on the mood swings, b/c I think I am gluten free. Thanks.

At times when I have felt drained, a little closer examination upon my eating habits usually reveals 1 of 2 problems. Not enough protein or not enough complex carbohydrates. I am hypoglycemic also so I have to eat for energy. So I have learned some things about this. Check how many grams of protein you are getting and compare it to the reccomended amount for your weight. If you are getting adequate protein, next check your carbs. Are you eating enough vegetables and fruits and gluten-free carbs like rice etc.? Make sure when you snack you are getting a protein and a carb together. For example, a handful of peanuts with some raisins. Hope this helps!

Sarah

Thank you for the tips. I think my protein consumption is definitely down. I am not a big meat eater so I look for other sources, and lately, have been slacking on them. It's summer and we are just running around and I have been slacking! Thanks.

By tired do you mean emotional or physical fatigue? If it's physical, maybe you still have some underlying health conditions that you haven't discovered yet. If it's emotional, I'd recommend seeing a therapist.

Is your entire family gluten-free? I now live alone. My entire apartment contains no gluten so I don't have a daily struggle with the disease. When I go to visit my parents I constantly have to be thinking about it because there's gluten in the house. I don't think it's too much trouble for an entire family to have gluten-free personal care products and for food to be mostly gluten-free. Maybe have one shelf of gluten food for the other family members. I also wouldn't make gluten food for the rest of the family. If they want it, they can prepare it themselves.

It is physical fatigue. I have started thyroid medication and it is stabilized now. But I am still so tired. I'm puzzled by it, because I want to feel good and get on with life!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


zip2play Apprentice
zip2play
Posted

I try to look at it like an extreme allergy, much like Peanut allergy! It is difficult at times, especially when on vacation or such, eating out is difficult. That is when I feel sorry for myself too!

If you energy is really bad, keep with your DR! I felt better initially but my energy never came back up. They just found I have issues with my thyroid! I have a cyst and nodules on it. That doesn't help me either!

Heck, if it isn't one thing, there seems to always be something else! ;)

hez Enthusiast
hez
Posted

You might want to have your thyroid levels checked. I am on synthroid (do not have a thyroid due to cancer) and if I have too little medication I am tired. Just a thought?

Hez

roxanne40 Newbie
roxanne40
Posted
  • Author
You might want to have your thyroid levels checked. I am on synthroid (do not have a thyroid due to cancer) and if I have too little medication I am tired. Just a thought?

Hez

I am on thyroid medication, and maybe it needs to be adjusted again. I will have another check-up since I just started 6 months ago. Thanks.

I try to look at it like an extreme allergy, much like Peanut allergy! It is difficult at times, especially when on vacation or such, eating out is difficult. That is when I feel sorry for myself too!

If you energy is really bad, keep with your DR! I felt better initially but my energy never came back up. They just found I have issues with my thyroid! I have a cyst and nodules on it. That doesn't help me either!

Heck, if it isn't one thing, there seems to always be something else! ;)

I am already on thyroid medication but I think I will go and have it re-checked to make sure I am getting the correct dose. And you are right-- if it's not one thing it's another. I spent half of last night in the bathroom and don't know why. I cooked my own meal and it was all gluten free. Go figure.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Theresa2407
      - Theresa2407 replied to chrish42's topic in Doctors
      6

      Doctors and Celiac.com

      I see it everyday on my feeds. They go out and buy gluten-free processed products and wonder why they can't heal their guts. I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field. Some days I would just like to scream. So much better when we had support groups and being able to teach...
    2. Scott Adams
      - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Have Tru Joy Sweets Choco Chews been discontinued??

      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    3. Scott Adams
      - Scott Adams replied to chrish42's topic in Doctors
      6

      Doctors and Celiac.com

      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes...
    5. MauraBue
      - MauraBue posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Have Tru Joy Sweets Choco Chews been discontinued??

      Help! My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac. Her favorite candy in the world is tootsie rolls. I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase. Have they been discontinued?? Does anyone have another recommendation...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,261
    • Most Online (within 30 mins)
      7,748
    Joanne Ham
    Newest Member
    Joanne Ham
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Theresa2407
      Doctors and Celiac.com

      By Theresa2407 · Posted

      I see it everyday on my feeds.  They go out and buy gluten-free processed products and wonder why they can't heal their guts.  I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field.  Some days I would just like to scream.  So much better when we had support groups and being able to teach them properly. I just had an EMA blood test because I haven't had one since my Doctor moved away.  Got test results today, doctor ordered a D3 vitamin test.  Now you know what  type of doctors we have.  Now I will have to pay for this test because she just tested my D3 end of December, and still have no idea about my EMA.    
    • Scott Adams
      Have Tru Joy Sweets Choco Chews been discontinued??

      By Scott Adams · Posted

      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    • Scott Adams
      Doctors and Celiac.com

      By Scott Adams · Posted

      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
    • MauraBue
      Have Tru Joy Sweets Choco Chews been discontinued??

      By MauraBue · Posted

      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.