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

So Tired I Could Sleep All Day, Ever Since Last Menstrual Period.


possiblyglutensensitive

Recommended Posts

possiblyglutensensitive Explorer

OK 3 weeks gluten-free, I Thought MAYBE I was feeling a little better? The shoulder and neck pain and nausea and general stomach pains are the areas which are really noticeable.

I had my period less than 1 week ago and I have been SO tired since. Neck kinks (oh and also general back pain), depressed mood, and just lots lots of fatigue, and also pain in my hands (top of hand when I move them a certian way) and wrists, which feel like bone pain (whatever that feels like.... I know it isn,t nerve pain or muscle or tendon pain because I am pretty sure I know what those feel like).

Headaches also came back, I had a pretty bad one on the 4th day of my period, and also today.

I am not even motivated to stay gluten-free.

I really REALLY need encouragement, namely, tell me how LONG it took for symptoms to get better or go away:

fatigue?

pain?

headaches?

ETC.? (your symptoms)

when do you just loose hope? when do you tell yourself that gluten is not the issue?


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

Are you anemic? If you are even borderline anemic, the blood loss from your period can put you under the functional range.

possiblyglutensensitive Explorer

Are you anemic? If you are even borderline anemic, the blood loss from your period can put you under the functional range.

Hi Jestar

thank yo so much for your reply. I need hope right now!

I have had iron and B12 anemia in the past confirmed by blood tests, and i had to take iron pills and get B12 shots (did nothing I was still tired).

I have also had "low iron" in the past. then the following blood tests would be normal, I don't know why.

i am now waiting for test results (taken about 3 weeks ago) for celiac (tTG) and a bunch of other things (like iron...).

Each time I have my period it's hard to climb back uphill. Sometimes I stay depressed for a good 2 weeks after. Each time I have my period I have increased pain. Only this time, BEFORE my period, my pain wasn't as bad as usual (I had been gluten-free for 2 weeks) and I felt hopeful. Now I just feel terrible. :(

I forgot to say, since yesterday I have foot pain, like pins, a bit of numbness and pain, and I hadn't had those pains since last summer when I was working long hours and exhausted. I don't get it! WHY is the foot pain back? I've been off work for a whole week! The pain is the worst when I am lying down. It woke me up last summer. Now it's not as bad as then but it still hurts.

JRS Rookie

I don't want to dishearten you, but it took me 6 months to really start to feel normal again. I didn't even realize how good I felt until I was glutened by some vitamins and saw how far I had come. You may want to start on some vitamins, approved by your local health food store. You may be hypothyroid, anemic, b12 def, etc. There are so many diseases associated with Celiac... Just take care of yourself! Rest, drink a lot of water, and try some supplements. And remember, you're not alone!

possiblyglutensensitive Explorer

I don't want to dishearten you, but it took me 6 months to really start to feel normal again. I didn't even realize how good I felt until I was glutened by some vitamins and saw how far I had come. You may want to start on some vitamins, approved by your local health food store. You may be hypothyroid, anemic, b12 def, etc. There are so many diseases associated with Celiac... Just take care of yourself! Rest, drink a lot of water, and try some supplements. And remember, you're not alone!

No, no, you actually encouraged me. I need to hear how it took a while to feel better so that I WILL stay gluten-free.

I am still waiting for test results but I expect them to be negative. All the more reason why I need to hear from people who persevered on their gluten-free diet and started to feel better eventually.

I am almost a month gluten-free and I am feeling better than 2 days ago when I started this thread. i am probably low in iron which would explain why I am so drained after my period? I also have all the symptoms.

notme Experienced

i have been gluten free since the end of july and let me tell you: my period knocks me on my A$$ ever since! totally fatigued, cramping, D, headaches, joint/bone pain, lower backache, etc. maybe since i was feeling so many of the same symptoms from the gluten ALL THE TIME now when i feel bad from a visit from mother nature, i can notice the difference. maybe the contrast was so slight that i felt bad all the time, then a little noticably worse for 4-6 days, then back to just *bad* - if that makes sense?! anyway, i'm getting ready for a little 'down-time' and for now i can plan to get the extra rest/plan accordingly for a week or so. beats feeling crappy ALL the time :)

possiblyglutensensitive Explorer

i have been gluten free since the end of july and let me tell you: my period knocks me on my A$$ ever since! totally fatigued, cramping, D, headaches, joint/bone pain, lower backache, etc. maybe since i was feeling so many of the same symptoms from the gluten ALL THE TIME now when i feel bad from a visit from mother nature, i can notice the difference. maybe the contrast was so slight that i felt bad all the time, then a little noticably worse for 4-6 days, then back to just *bad* - if that makes sense?! anyway, i'm getting ready for a little 'down-time' and for now i can plan to get the extra rest/plan accordingly for a week or so. beats feeling crappy ALL the time :)

That makes sense. Have you noticed a lot of improvement (except when you have your period obviously!) since you went gluten-free? With what symptoms?

My neck and shoulders are better, but if I get too stressed (like today at the emergency vet hospital with my dog) or spend too much time a the computer, I still hurt quite a bit. And the fatigue is still pronounced, espeically if I am stressed out.


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



Celiac.com Sponsor (A8-M):



meme2kids Rookie

Just wanted to say thanks guys.

I was feeling so bad today, severally exhausted after 10 hours of sleep (generally get 3-5). Splitting headache, exhaustion has ruled the last 2 days and wondered what the heck was going on.

notme Experienced

That makes sense. Have you noticed a lot of improvement (except when you have your period obviously!) since you went gluten-free? With what symptoms?

My neck and shoulders are better, but if I get too stressed (like today at the emergency vet hospital with my dog) or spend too much time a the computer, I still hurt quite a bit. And the fatigue is still pronounced, espeically if I am stressed out.

my neck was soooo sore (and shoulders, too, but most noticable was neck pain) i had absolutely no sense of smell, allergies (nasal, respiratory, etc) of course GI issues galore, pain at the bottom of my left ribcage (no idea) fatigue like crazy, interest in NOTHING new, old or whatever (alot of things that should have been taken care of - simple things like making a phone call or writing a letter) no appetite, my house was on bare minimum caretaking, etc. tell you what: my body was NOT FUNCTIONING - it does so many amazing things being fed the right things! i feel *shiny* (my color is improved sooo much!) and it gets better all the time. i am still amazed. every day! i might even throw the football with my grandkid if he keeps bugging me :) stopped taking my claritin d-12 b/c i don't need it anymore right now (we'll see what spring brings me) the football thing: my co-ordination is returning. stick with the diet; it means so much as far as quality of life! also, sleeping wayyy better (was a very fitful sleeper) and since i gained more weight, not freezing to death all the time. i am still affected by stress, but not by *glutened* stress :) then mother nature comes and throws that present in my lap..... lol i am due pretty soon.... if my posts my become scathing. as 'ms. b%$@#y' has awakened from her gluten coma lolol i noticed her, too. i was feeling so froggy the other day - driving the grandkid (he is 7) to his buddy's house to cookout we were chewing and snapping our bubble gum and cranking the stereo and oh, mercy, it was 60 degrees so the windows were down :) got me A SPEEDING TICKET!! first one in 15 years. that cop must've thought i was insane cuz i laughed so hard. that spunky chick has been asleep for a loong long time :D

  • 2 months later...
sarawr Newbie

Glad i found this thread, because I've been gluten free for 3 months now and everytime i get a period it feels like my early periods all over again, where it's the worst pains, that i'm exhausted, headaches all day, major bloating! It's bad because it really is affecting my daily life, unfortunately i had severe pains all day yesterday, and all i wanted to do was stay in bed, but had to entertain family for 12 hours. Was actually horrible :( Maybe it is like someone else said, it feels like all the gluten symptoms again, but because they've gone almost completely from getting off gluten, it seems extra noticeable at the moment? Please tell me it calms down??

txplowgirl Enthusiast

Hey possiblyglutensensitive,

are you still eating soy and nightshade vegetables?

it wasn't until I eleminated those that the pain started going away. My periods used to put me down for several days but it's starting to ease up finally. It's taken me 2 years to get where I am at now. I'm not 100% so I figure I have another 2 to 3 years to have optimal results. You are just starting hon. Look at this like baby steps. You have just taken your first baby step. It's gonna be awhile before you can crawl. Hang in there. You'll eventually be running. :D

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748

    Tdodge
    Newest Member
    Tdodge
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • 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.