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

More Progress

alex11602

By alex11602
in Coping with Celiac Disease

Recommended Posts

IrishHeart Veteran
IrishHeart
Posted

I couldn't find the NOW brand, but my husband just found Nature Made B complex that he is getting for me and I will start taking it this week. I am going to Rite Aid later this week and will look for D3 and I believe they carry the Culturelle also.

My girls got health insurance this past week, but my husband and I were denied so I still can't go to the drs. I really wish I could though since I really want to get my thyroid checked since I feel that it could be a problem. I am always cold, extremely tired, depressed (even though that I learned to push through since I take care of my girls during the day), I feel foggy, my skin is so dry, get shaky, my hair sometimes comes out in clumps, have issues using the bathroom and my cycle is horrible, but the strange part is I will have days here and there where I feel the exact opposite...on those days I get hot, am wide awake, even hyper but a bit irritable(drs diagnosed me as bipolar a few years ago because of this) and have to use the bathroom alot.

I just want to be normal!!! Well, maybe I shouldn't say normal, but more functional is what I really want.

Some people on here were told they were bipolar and as it turns out, they were NOT. Gluten and malabsorption from celiac can cause a multitude of problems hon. I was so overwrought from it, I thought sure I was going to lose my freakin mind. But, I still have it. :)

I am concerned that you are not having more good days than bad

days and have what sound like swinging thyroid symptoms--but again, these can resolve on a gluten-free diet. (Mine did --and I was put on thyroid meds for no good reason, which caused MORE problems--I was swinging hyper or hypo all the time--but that is another long story)

But that was MY experience.

Try the Culturelle (get the DAIRY FREE one), VIT D-3 (CHECK the label!) and the B complex. They take a while to "kick in". But if you are POSITIVE you are not getting glutened somehow and your vitamin levels start to balance and you get the gut symptoms under control from the probiotics, you may start to see some improvement in your symptoms.

I do not want to worry you, but if you are really EXHAUSTED (like it feels like you are actually dragging your own legs and arms around) and puffy in the face, always cold and have lost the outer part of your eyebrows--you may well be hypothyroid. You can have hyper symptoms too--as you describe. And if so, you need to be treated with meds. (It's called Hashimoto's thyroiditis)

I know you cannot afford testing without insurance, but an undiagnosed thyroid disease is not a good thing and if you are still feeling really bad ALL THE TIME in the coming weeks, (not occasionally--because that may just be because you are still healing--a few of us still have yucky days) you may need to see a doctor. You should not let this go.

In my humble opinion.

Keep us posted on your progress!

How is the course work going? :)

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

You have every symptom of Hashimoto's thyroid disease in the book, including the hyperthyroid periods. People with Hashimoto's are often misdiagnosed as bipolar. The hyper- periods happen when your thyroid gets inflamed from the autoimmunity.

Basic thyroid testing is not expensive at all and you might be able to order it through this service. Here is a basic panel for $42.50. This service is for real and goes through the same diagnostic labs your Dr. uses like Quest and Labcorp. If you get the test and post results, we can help you interpret it.

Open Original Shared Link

This nice $125 panel would also tell you if you have Hashimoto's antibodies, called anti-TPO. If you can afford it, it's the one I would recommend.

Open Original Shared Link

If the TSH comes out high, and especially if you have anti-TPO antibodies, you can see whether you can afford a Dr. visit and probably at least one followup. Thyroid pills are dirt cheap if you can find the Mylan brand generic, which is gluten-free. They are under $10/month with a drugstore prescription plan.

IrishHeart Veteran
IrishHeart
Posted

Looks like Skylark and I were posting at the same time. :)

Also looks like we have the same opinion regarding the thyroid.

I see she has found you some inexpensive testing. Fantastic! Skylark comes through again! :)

alex11602 Collaborator
alex11602
Posted
  • Author

Thank you both of you. I will see what I can rearrange financially to get tested because I am very tired of feeling this way. And it does feel like I'm dragging around a huge bag full of bricks alot of the time.

When I am home with the girls I make sure they are taken care of, homeschool my daughter and work on my schoolwork, but that is about it. On the plus side my schoolwork is going pretty well, I am having some trouble with college algebra since it has been 8 years since I have done it, thank you for asking IrishHeart.

As far as the good days and bad days, I am a million times better then I was a year ago when I was still eating gluten. There is really no more stomach pain or bloating (only the occasional which I think is normal) and when I was eating gluten I was in the bathroom all the time which doesn't happen often anymore and like I said there isn't pain when it does happen so even with all the other issues I still consider those days to be pretty good.

josh052980 Enthusiast
josh052980
Posted

Great progress! I'm glad you're getting better. Keep it up, and keep letting us know how you're doing!

alex11602 Collaborator
alex11602
Posted
  • Author

Thank you Josh!

  • 1 month later...
alex11602 Collaborator
alex11602
Posted
  • Author

Two months ago when I started this thread I was feeling so hopeful about everything, it's funny how much things can change in that amount of time.

We have been gluten free, soy free, etc for over a year and I have been pretty much sugar free for almost 6 months and now I am having trouble with it. I think more the sugar since I can't really even eat fruit and I can try to adapt most things to gluten free, but it's not that easy with sugar. I'm sorry I just have to vent here because as much as my husband tries he can't understand why I cry because I can't just happily munch away on fruit or something like that. I am tired of thinking of everything that I put in my mouth because I just want to be able to focus on not being so so tired. I want to be able to just focus on my classes (which somehow I am passing thankfully) and to focus on my children.

Which is a whole other point right now, I think I am so upset and having to worry about my food since I am so worried about my daughter. She has to go to an ENT tomorrow because she has a perforated ear drum in the ear that her hearing is already bad (if I'm not mistaken her hearing in her left ear was only at 50% and only 75% in her right ear at 6 months and the audiologist said it would most likely worsen), she doesn't respond to us talking if she can't see us unless we yell and she keeps asking us to turn things up. I am worried about her, she is only 2 and has already had to go through so much. And I have to try and hold it together because my husband just says that she already knows some sign language (we found out about her hearing deficit originally when she was 6 months old), but it's not the point I want my daughter to be able to hear me say that I love her and that I am proud of her. Then there is my younger daughter who is so upset about her sister because she is the one her perforated her ear drum. She wanted to play doctor since she wants to be a pediatrician and put the thermometer (one of the underarm ones) in the ear to check the patients temp so she feels guilty for doing it and I feel guilty because I was in the shower when it happened.

I'm sorry about venting about this on here, but I'm just tired of everything right now and my husband just isn't getting it.

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

Celiac.com Sponsor (A8-M):


Bubba's Mom Enthusiast
Bubba's Mom
Posted

Two months ago when I started this thread I was feeling so hopeful about everything, it's funny how much things can change in that amount of time.

We have been gluten free, soy free, etc for over a year and I have been pretty much sugar free for almost 6 months and now I am having trouble with it. I think more the sugar since I can't really even eat fruit and I can try to adapt most things to gluten free, but it's not that easy with sugar. I'm sorry I just have to vent here because as much as my husband tries he can't understand why I cry because I can't just happily munch away on fruit or something like that. I am tired of thinking of everything that I put in my mouth because I just want to be able to focus on not being so so tired. I want to be able to just focus on my classes (which somehow I am passing thankfully) and to focus on my children.

Which is a whole other point right now, I think I am so upset and having to worry about my food since I am so worried about my daughter. She has to go to an ENT tomorrow because she has a perforated ear drum in the ear that her hearing is already bad (if I'm not mistaken her hearing in her left ear was only at 50% and only 75% in her right ear at 6 months and the audiologist said it would most likely worsen), she doesn't respond to us talking if she can't see us unless we yell and she keeps asking us to turn things up. I am worried about her, she is only 2 and has already had to go through so much. And I have to try and hold it together because my husband just says that she already knows some sign language (we found out about her hearing deficit originally when she was 6 months old), but it's not the point I want my daughter to be able to hear me say that I love her and that I am proud of her. Then there is my younger daughter who is so upset about her sister because she is the one her perforated her ear drum. She wanted to play doctor since she wants to be a pediatrician and put the thermometer (one of the underarm ones) in the ear to check the patients temp so she feels guilty for doing it and I feel guilty because I was in the shower when it happened.

I'm sorry about venting about this on here, but I'm just tired of everything right now and my husband just isn't getting it.

The food restrictions get old don't they? My hubby can't understand why I feel so sad when I see him sitting there munching away on chocolate, or other things I can't have, You have it even worse than me, because I can have sugars, just not anything with soy. People who haven't been through it, just can't understand it. They just can't relate.

The added stress of worrying about your daughter is hard too. Perforated ear drums heal don't they?

I hope this is just a passing thing that gets better for her. These accidents happen. Don't feel guilty. We just can't watch our kids 24/7..and would never think to warn our kids against doing something like that.

As time goes on..if your daughter's hearing worsens..don't ever doubt that she'll know you love her. or are proud of her. There will always be a way to say it.

(((hugs)))

alex11602 Collaborator
alex11602
Posted
  • Author

The food restrictions get old don't they? My hubby can't understand why I feel so sad when I see him sitting there munching away on chocolate, or other things I can't have, You have it even worse than me, because I can have sugars, just not anything with soy. People who haven't been through it, just can't understand it. They just can't relate.

The added stress of worrying about your daughter is hard too. Perforated ear drums heal don't they?

I hope this is just a passing thing that gets better for her. These accidents happen. Don't feel guilty. We just can't watch our kids 24/7..and would never think to warn our kids against doing something like that.

As time goes on..if your daughter's hearing worsens..don't ever doubt that she'll know you love her. or are proud of her. There will always be a way to say it.

(((hugs)))

Thank you! Perforated ear drums do usually heal with no intervention unless there is an infection, which kind of scares me since she hasn't had antibiotics since she was in the hospital after being born. The concern with her is that the audiologist said that her hearing would continue to deteriorate until she would probably need hearing aids as a teenager and I'm just afraid that this is going to speed everything up. I don't even want to have to think about food when I have my 2 year asking me to turn the music up because she thinks it's not on (the stereo was at 25, the highest is 35) and I am too darn anxious (and have been since going gluten free) to even go with her to the doctor and I should be there. I'm sorry, she is on her way there now and I am really worried.

Skylark Collaborator
Skylark
Posted

The hearing loss doesn't sound like something you would realistically stop. The perforation may have sped the hearing loss up but you can't be second-guessing that sort of thing. You will drive yourself crazy.

It almost sounds like you need some support from someone who knows about deafness. You might get some help coping with the stress and guilt, and I bet you'd like some help planning the best things to do for your daughter. (i.e. should she learn to sign, should YOU learn to sign, how much is she relying on lip reading, does she need speech therapy?)

alex11602 Collaborator
alex11602
Posted
  • Author

The hearing loss doesn't sound like something you would realistically stop. The perforation may have sped the hearing loss up but you can't be second-guessing that sort of thing. You will drive yourself crazy.

It almost sounds like you need some support from someone who knows about deafness. You might get some help coping with the stress and guilt, and I bet you'd like some help planning the best things to do for your daughter. (i.e. should she learn to sign, should YOU learn to sign, how much is she relying on lip reading, does she need speech therapy?)

I guess I really should try to stop stressing about things that I can't control. I had an appointment to go to counseling to deal with the stress and anxiety, but I got extremely anxious about it and we cancelled. My two daughters and I started learning to sign using Signing Time about 2 years ago when the youngest was 6 months old and we found out about her hearing. My husband sort of tried, but didn't think it was that big of a deal and no one else in the family has even attempted to learn. I talk with my hands to her all the time even when I'm not constantly signing and I realized that those are the things she responds to because if she isn't looking at you when you talk to her in a normal voice you might as well be talking to a brick wall. After her appointment today I am going to call Early Intervention because they told me that if she has a doctor that evaluated her then they just need a letter and it shortens the evaluation process.

Skylark Collaborator
Skylark
Posted

I'm really glad to hear you're going to Early Intervention. It sounds like the Signing Time was a great idea. Remember that if you and your daughter can sign some you can always tell her how much you love her, even across a crowded room!

I'm not sure what you were so anxious about with the counseling but the counselors I've gone to have been super-nice people. They really want to help and they can be very compassionate. I dealt with anxiety up until I got off gluten, and counselors provided a lot of help along the way. I'd encourage you to make another appointment and keep it this time around. :)

alex11602 Collaborator
alex11602
Posted
  • Author

I'm really glad to hear you're going to Early Intervention. It sounds like the Signing Time was a great idea. Remember that if you and your daughter can sign some you can always tell her how much you love her, even across a crowded room!

I'm not sure what you were so anxious about with the counseling but the counselors I've gone to have been super-nice people. They really want to help and they can be very compassionate. I dealt with anxiety up until I got off gluten, and counselors provided a lot of help along the way. I'd encourage you to make another appointment and keep it this time around. :)

I have had some bad experiences with counselers, they tend to look down on you when you cut yourself.

My husband is on his way back from the doctor with my daughter so he called me and she is ok, no infection or anything.

Skylark Collaborator
Skylark
Posted

I have had some bad experiences with counselers, they tend to look down on you when you cut yourself.

My husband is on his way back from the doctor with my daughter so he called me and she is ok, no infection or anything.

That's great news about your daughter. I'm glad to hear she is well.

I'm NOT happy to hear that you have had bad experiences with counselors. What a miserable deal, to be that stressed out and have a counselor look down on you. Geez. Well, keep coming here and we'll do our best to support you!

alex11602 Collaborator
alex11602
Posted
  • Author

That's great news about your daughter. I'm glad to hear she is well.

I'm NOT happy to hear that you have had bad experiences with counselors. What a miserable deal, to be that stressed out and have a counselor look down on you. Geez. Well, keep coming here and we'll do our best to support you!

Thank you Skylark :)

cyberprof Enthusiast
cyberprof
Posted

Thank you Skylark :)

It can be hard to find a good counselor if you're stressed from prior experiences. Try getting a referral from a friend/family member that you trust or your doctor or your daughter's doctor. Hang in there!

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I guess I really should try to stop stressing about things that I can't control. I had an appointment to go to counseling to deal with the stress and anxiety, but I got extremely anxious about it and we cancelled. My two daughters and I started learning to sign using Signing Time about 2 years ago when the youngest was 6 months old and we found out about her hearing. My husband sort of tried, but didn't think it was that big of a deal and no one else in the family has even attempted to learn. I talk with my hands to her all the time even when I'm not constantly signing and I realized that those are the things she responds to because if she isn't looking at you when you talk to her in a normal voice you might as well be talking to a brick wall. After her appointment today I am going to call Early Intervention because they told me that if she has a doctor that evaluated her then they just need a letter and it shortens the evaluation process.

Learning not to worry about things you can't control is really hard. Some of us seem to be hard wired with a "worry gene"?

You have such a full plate right now! Even so, you've taken steps in the right direction towards helping your daughter, and at the same time steps towards working through your own health issues...while taking classes and being a parent? It boggles my mind! :blink:

I'm happy to know it looks like there's no infection and your daughter's ear will heal. Getting early intervention will help a lot too.

Counseling would be beneficial with all that's going on I think? Maybe you could find a counselor through the hearing loss intervention people?

A good counselor should be non-judgemental. I'm so sorry you've had bad experiences in the past. Some counselors don't understand that self-hurting behavior is caused by a deep pain inside that doesn't make sense to the sufferer. Cutting (or self harm) gives almost a sense of relief, because you can see the cut and know there's a reason for the pain. There's also a sort of endorphin release from it?

That's not your issue now, so maybe you won't even have to bring it up..unless you're getting those feelings again?

More hugs coming your way...

(((hugs)))

Ninja Contributor
Ninja
Posted

Hi Alex

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,859
    • Most Online (within 30 mins)
      7,748
    Lesley-Anne
    Newest Member
    Lesley-Anne
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.