Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

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

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

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
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
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

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
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

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

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
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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,842
    • Most Online (within 30 mins)
      7,748

    Karen Faye
    Newest Member
    Karen Faye
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @ABP2025, Here's some studies and articles that will help you learn more about thiamin and all... I will write more later. It's possible that your antibiotic for giardiasis has caused thiamine deficiency.   https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/ And... https://hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/ And... Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ and... Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/      
    • DayaInTheSun
      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
×
×
  • Create New...