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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.