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

The Bad News Keeps Rolling In.

Brooklyn528

By Brooklyn528
in Coping with Celiac Disease

Recommended Posts

Brooklyn528 Apprentice
Brooklyn528
Posted

Hi, I'm having a really hard time coping right now, and I need some help. I have had two autoimmune diseases diagnosed in the past year. Just yesterday, I found out that my mother has lupus. I have a lot of the symptoms also. I'm being sent to a rhuematologist and getting bloodwork done to check for RA, Thyroiditis, and Lupus. I'm just having a hard time accepting all of this. I'm only 24 years old, and I feel like my world is falling apart around me. My children are having lots of odd symptoms, and now I worry my daughter might already have Lupus or JRA. She has positive IGG and popping joints with soreness. She falls asleep in the car on the way home from school. I just don't know what to do. I'm lost and tired. I wonder when it will end. How many diagnosises can I get before they find everything? I'm just wondering if anyone out there is going through the same thing or has gone through it already. I need someone to talk to.

Thanks,

Brooklyn

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

Celiac.com Sponsor (A8-M):


mcoffey21 Newbie
mcoffey21
Posted
Hi, I'm having a really hard time coping right now, and I need some help. I have had two autoimmune diseases diagnosed in the past year. Just yesterday, I found out that my mother has lupus. I have a lot of the symptoms also. I'm being sent to a rhuematologist and getting bloodwork done to check for RA, Thyroiditis, and Lupus. I'm just having a hard time accepting all of this. I'm only 24 years old, and I feel like my world is falling apart around me. My children are having lots of odd symptoms, and now I worry my daughter might already have Lupus or JRA. She has positive IGG and popping joints with soreness. She falls asleep in the car on the way home from school. I just don't know what to do. I'm lost and tired. I wonder when it will end. How many diagnosises can I get before they find everything? I'm just wondering if anyone out there is going through the same thing or has gone through it already. I need someone to talk to.

Thanks,

Brooklyn

HI, So sorry to hear that you are having a hard time coping.. It must be so difficult at such a young age to be going thru this.. Though I don't personally have any auto immune problems, BUT both of my children do... My 14 year old daughter has Celiac Disease and is now having further testing for RA, and other various symptoms.. My 11 year old daughter was diagnosed with Hashimoto's a few months back.. It has been a rocky, rocky road for us, and I would give anything to take all of my children's health problems so they would not have to endure the pain/fatigue and everything else that comes with these issues. I don't know that there ever will be an end to this for you , or for my family, but there is hope! Be vigilant with your diet, listen to your body! When you are tired, rest! Take your vitamins, and find a doctor who is VERY through. Most of all, research, and reach out! I firmly believe that sharing your story will help you feel better emotionally, which in turn will help your physical health, even if just a small amount.. Stay strong!!!!

And I must say, if your daughter is having any kind of symptoms whatsoever, have her tested.. The sooner she is diagnosed with anything, the sooner you can begin to relieve her symptoms.. My daughters went undiagnosed for several years... How I wish I could have had them diagnosed in the very beginning..

mommida Enthusiast
mommida
Posted

Well that is a lot going on! I have learned over the past few years not to even bother to ask if it can get any worse.

Take some time to address what you are feeling. Realize you can't be guilty or wrong for feeling, for having human emotions. If you need to cry then cry, let it out. Call your best friend. Make an appointment for something fun for you to enjoy.

Just keep breathing. Break it down to what you can handle. If it can't be one day at a time, how about 5 more minutes.

If you are still feeling overwhelmed, see a professional counsler/ Doctor.

GFinDC Veteran
GFinDC
Posted

Hi Brooklyn,

Sounds like a lot going on in your family. I suppose you are aware of the link between celiac disease and other auto immune diseases? If you google "celiac associated condition" you will find some links listing them. Basically, people with celiac are more likely to develop other autoimmune diseases. I don't know how strict you are with the diet, but it might be a case where you should try extra hard to avoid any gluten. It could help your situation out some. Some of us follow a whole foods diet, making most meals from whole ingredients and avoiding processed foods. That way you don't have to read lots of labels, (the label on a potato is pretty short) and can avoid cross contamination issues too. I also think it might be good for you to try some DPP-IV. DPP-IV is a digestive enzyme that can help break down proteins, including gluten and casein. It is not able to break down large amounts of gluten though, only small amounts like you might get from accidental cross contamination.

Here's a list of the top 8 allergens for the US. Since soy is one of them maybe you could try eliminating it. For that matter maybe try eliminating all the top 8 allergens and see if it helps anything. An elimination diet might help sometime too.

* Milk

* Eggs

* Peanuts

* Tree nuts (such as almonds, cashews, walnuts)

* Fish (such as bass, cod, flounder)

* Shellfish (such as crab, lobster, shrimp)

* Soy

* Wheat

Open Original Shared Link

I saw your other thread somewhere on the forum. I was trying to remember the name of this ask a patient site, to post for you. They have reviews by patients of different drugs. It is kind of interesting to read what patients have to say about medicines vs. what doctors and drug makers say in their advertising.

Open Original Shared Link

I hope you feel better soon! :)

Brooklyn528 Apprentice
Brooklyn528
Posted
  • Author

Just a little update. I've now been admitted to the hospital here in Indianapolis. I was having what I thought was blood in my urine, but it turns out that it's not blood but myoglobin. This is released when muscle tissue is being broken down. My hepatologist is running a gammit of test to find out what is going on. But i will keep everyone who has replied updated on my progress.

Brooklyn

twe0708 Community Regular
twe0708
Posted
Just a little update. I've now been admitted to the hospital here in Indianapolis. I was having what I thought was blood in my urine, but it turns out that it's not blood but myoglobin. This is released when muscle tissue is being broken down. My hepatologist is running a gammit of test to find out what is going on. But i will keep everyone who has replied updated on my progress.

Brooklyn

So sorry to hear this! Hang in there and you will get through this! You are in our thoughts and prayers!

esammarie Newbie
esammarie
Posted
Just a little update. I've now been admitted to the hospital here in Indianapolis. I was having what I thought was blood in my urine, but it turns out that it's not blood but myoglobin. This is released when muscle tissue is being broken down. My hepatologist is running a gammit of test to find out what is going on. But i will keep everyone who has replied updated on my progress.

Brooklyn

Oh my goodness!!! I am so sorry you are going through this! Autoimmune diseases definitely are linked. If you have one, it's more likely that you'll have another or another. There are several articles and reports about this on this website and on trusted sources like www.csaceliacs.org, the website of the Celiac Sprue Association. I found the book Gluten-Free Living for Dummies really helpful. It's very informative and comforting at the same time. It helped me not feel so depressed about just being diagnosed with celiac disease and dermatitis herpetiformis.

Thank goodness the doctors put you in the hospital and are taking this seriously and not brushing you off, though hospitals aren't great places to be.

My sister just was diagnosed with Sjogren's and they said she's negative for celiac antibodies at this time and doesn't have lupus at this time. They were not surprised that she and I developed our symptoms at the same time - I am 42 and she is 41. They thought I had lupus back in you college years but it really was fibromyalgia (and maybe even when this celiac stuff started) .Our Grandmother had Hashimoto's and one of her daughters - my mom's sister and our aunt - has RA. I guess it all is in the family!

Finding comfort and "kindred spirits" here on this forum has really helped me. I hope it helps you, too. If I can help in any way, please contact me. I will pray for you and wish for the doctors to do their best to get you on the road to good health!

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

Celiac.com Sponsor (A8-M):


Swimmr Contributor
Swimmr
Posted

I'll keep you in my thoughts and prayers. Very sorry you're going through this!

TrillumHunter Enthusiast
TrillumHunter
Posted

Prayers for you and yours!

Glamour Explorer
Glamour
Posted

Try not to stress and keep us posted.

Just curious, if one is celiac and catches it early, and abides by the diet, will that help to prevent further deterioration and other autoimmune disease? Or is it just a given.

Brooklyn528 Apprentice
Brooklyn528
Posted
  • Author

Well, I'm gonna be staying another day. The doctors didn't come and tell me anything today, so I believe they are still trying to figure it out. It rather odd to most of the doctors I've talked to so far that I am having myoglobin in my urine. I just hope that this is the last extended stay that I have to endure. I miss my babies and being at home. I will let everyone know when/if I get any news.

Brooklyn

GFinDC Veteran
GFinDC
Posted

Well, come on, Friday is golf day right? :D:) Maybe they have some test results they are waiting on? Anyhow, maybe a good rest will do you good. I said a prayer for you too. Hang in there and take a little breather from the normal routine eh?

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. tiffanygosci
      - tiffanygosci posted a topic in Coping with Celiac Disease
      0

      New Celiac Mama in My 30s

      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After...
    2. knitty kitty
      - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

      On the AIP diet, all processed foods are eliminated. This includes gluten-free bread. You'll be eating meats and vegetables, mostly. Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well. Veggies should be fresh, or frozen without other ingredients like sauces or seasonings. Nightshade vegetables...
    3. Yaya
      - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

      Thank you for responding and for prayers. So sorry for your struggles, I will keep you in mine. You are so young to have so many struggles, mine are mild by comparison. I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of. Following surgery: multiple symptoms/oddities appeared including...
    4. larc
      - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back. My cardiologist offered me a collection of pharmaceuticals at the time...
    5. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

      So I should not eat my gluten free bread? I will try the vitamins. Thank you all so very much for your ideas and understanding. I'm feeling better today and have gathered back my composure! Thank you kitty kitty I am going to look this diet up right away. And read the paleo diet and really see if I can make this a better situation then it currently...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,918
    • Most Online (within 30 mins)
      7,748
    Dottie78
    Newest Member
    Dottie78
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After having my last baby this year, my body has finally started to find its new rhythm and balance...but things started to feel out of sorts. A lot of symptoms were convoluted with postpartum symptoms, and, to top it all off, my cycle came back about 4m postpartum. I was having reoccurring migraines, nausea, joint pain, numbness in my right arm, hand and fingers, tummy problems, hives. I finally went to my PCP in August just for a wellness check and I brought up my ailments. I'm so thankful for a doctor that listens and is thorough. He ended up running a food allergy panel, an environmental respiratory panel, and a celiac panel. I found out I was allergic to wheat, allergic to about every plant and dust mites, and I did have celiac. I had an endoscopy done on October 3 and my results confirmed celiac in the early stages! I am truly blessed to have an answer to my issues. When I eat gluten, my brain feels like it's on fire and like someone is squeezing it. I can't think straight and I zone out easily. My eyes can't focus. I get a super bad migraine and nausea. I get so tired and irritable and anxious. My body hurts sometimes and my gut gets bloated, gassy, constipated, and ends with bowel movements. All this time I thought I was just having mom brain or feeling the effects of postpartum, sleep deprivation, and the like (which I probably was having and the celiac disease just ramped it up!) I have yet to see a dietician but I've already been eating and shopping gluten-free. My husband and I have been working on turning our kitchen 100% gluten-free (we didn't think this would be so expensive but he assured me that my health is worth all the money in the world). There are still a few things to replace and clean. I'm already getting tired of reading labels. I even replaced some of my personal hygiene care for myself and the kids because they were either made with oats or not labeled gluten-free. I have already started feeling better but have made some mistakes along the way or have gotten contamination thrown into the mix. It's been hard! Today I joked that I got diagnosed at the worst time of the year with all the holidays coming up. I will just need to bring my own food to have and to share. It will be okay but different after years of eating "normally". Today I ordered in person at Chipotle and was trying not to feel self-conscious as the line got long because they were following food-allergy protocols. It's all worth it to be the healthiest version of myself for me and my family. I would be lying if I said I wasn't a little overwhelmed and a little overloaded!  I am thankful for this community and I look forward to learning more from you all. I need the help, that's for sure!
    • knitty kitty
      Help I’m cross contaminating myself,

      By knitty kitty · Posted

      On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.   I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  
    • Yaya
      Does anyone here also have Afib

      By Yaya · Posted

      Thank you for responding and for prayers.  So sorry for your struggles, I will keep you in mine.  You are so young to have so many struggles, mine are mild by comparison.  I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of.  Following surgery: multiple symptoms/oddities appeared including ridges on fingernails, eczema, hair falling out in patches, dry eyes, upset stomach constantly and other weird symptoms that I don't really remember.  Gastro did tests and endoscopy and verified celiac disease. Re heart: I was born with Mitral Valve Prolapse (MVP) and an irregular heartbeat, yet heart was extremely strong.  It was difficult to pick up the irregular heartbeat on the EKG per cardiologist.  I had Covid at 77, recovered in 10 days and 2 weeks later developed long Covid. What the doctors and nurses called the "kickoff to long Covid, was A-fib.  I didn't know what was going on with my heart and had ignored early symptoms as some kind of passing aftereffect stemming from Covid.  I was right about where it came from, but wrong on it being "passing".  I have A-fib as my permanent reminder of Covid and take Flecainide every morning and night and will for the rest of my life to stabilize my heartbeat.   
    • larc
      Does anyone here also have Afib

      By larc · Posted

      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back.  My cardiologist offered me a collection of pharmaceuticals at the time.  But I passed on them. 
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
×
×
  • 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.