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

Did I Finally Find An Answer?


Claire415

Recommended Posts

Claire415 Newbie

Would like some advice regarding my symptoms. As a reference so you know how long this has been going on I'll tell you I am 25 years old now. To me it sounds like Celiac Disease is the answer I've been looking for.

This is probably going to be long, so please bear with me.

Since about age 10 I've had what looks like a rash with bumps on my arms and legs. It itches too. Have tried numerous things to get it to go away with no luck.

At about 13-14 I started have digestion problems. Sometimes when I ate I would get horrible diarrhea, abdominal cramping, gas, bloating, urgency, the works. This has continued to this day.

At 15, after years of chronic strep throat infections, I had my tonsils taken out. This has curbed the infections.

Starting at about 17-18 I was gained wieght fast in spite of having little appetite. Around that time I also started getting bad heartburn and needed prescription meds for it. Had severe depression to the point of suicidal thoughts.

Sometime around 20 I was diagnosed with IBS. This GI doc was not very good, took one look at my chart, saw the history of depression and came up with this diagnosis. About a week after that I was hospitalized with gallbladder attacks and almost had to have it removed.

Around the same time as the gallbladder issues, I started having what sounded like symptoms of fibromyalgia with the painful spots upon touching.

Currently, I have all the symptoms I've listed plus over time I've developed fatigue, my hair falls out, very minor scratches don't heal. I currently have ones that are about 3 months old and are still visible. My skin is very dry also. I'm sure I'm forgetting other things too. Even though I have no appetite, and eat very little, I gain weight. I've even been on Weight Watchers in the past and exercised with no results.

Also, my mother has many of the same symptoms I do. Some of them are even worse. I also have a cousin on my mom's side of the family that has digestive issues as well and has been tested for autoimmune disorders, but I don't know what the outcomes of those were.

What do you guys think, have I finally found what has made me miserable for so many years? Thanks so much for your time.


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



Celiac.com Sponsor (A8-M):



aikiducky Apprentice

For what it's worth, I think it sounds like you could well have celiac. It would be worth it to get tested. Sorry to hear you are having so many health problems, and such an unhelpful doctor...

Pauliina

ravenwoodglass Mentor
Would like some advice regarding my symptoms.  As a reference so you know how long this has been going on I'll tell you I am 25 years old now.  To me it sounds like Celiac Disease is the answer I've been looking for.

This is probably going to be long, so please bear with me.

Since about age 10 I've had what looks like a rash with bumps on my arms and legs.  It itches too.  Have tried numerous things to get it to go away with no luck.

At about 13-14 I started have digestion problems.  Sometimes when I ate I would get horrible diarrhea, abdominal cramping, gas, bloating, urgency, the works.  This has continued to this day. 

At 15, after years of chronic strep throat infections, I had my tonsils taken out.  This has curbed the infections.

Starting at about 17-18 I was gained wieght fast in spite of having little appetite.  Around that time I also started getting bad heartburn and needed prescription meds for it.  Had severe depression to the point of suicidal thoughts.

Sometime around 20 I was diagnosed with IBS.  This GI doc was not very good, took one look at my chart, saw the history of depression and came up with this diagnosis.  About a week after that I was hospitalized with gallbladder attacks and almost had to have it removed. 

Around the same time as the gallbladder issues, I started having what sounded like symptoms of fibromyalgia with the painful spots upon touching. 

Currently, I have all the symptoms I've listed plus over time I've developed fatigue, my hair falls out, very minor scratches don't heal.  I currently have ones that are about 3 months old and are still visible.  My skin is very dry also.  I'm sure I'm forgetting other things too.  Even though I have no appetite, and eat very little, I gain weight.  I've even been on Weight Watchers in the past and exercised with no results. 

Also, my mother has many of the same symptoms I do.  Some of them are even worse.  I also have a cousin on my mom's side of the family that has digestive issues as well and has been tested for autoimmune disorders, but I don't know what the outcomes of those were.

What do you guys think, have I finally found what has made me miserable for so many years?  Thanks so much for your time.

<{POST_SNAPBACK}>

If you and your Mom aren't celiac I'll eat my hat.  You sound just like me before diagnosis.

ravenwoodglass Mentor

Got the quote last try let me try again, You do sound celiac. Both you and your Mom, don't waste any more time wondering and get it checked out either with a new doctor or by eliminating gluten from your diet. Good luck

sspitzer5 Apprentice

Celiacs certainly sounds possible to me. Definitely worth checking into.

I'd also get your thyroid checked. Hypothyroidism could account for some of the things you describe too.

Good luck!

Susan

tarnalberry Community Regular

It could well be celiac. I would encourage you to:

1. get the skin rashes biopsied for DH

2. get a doctor to run the full celiac panel of blood work on you

3. regardless of the results, after all testing is complete, try the gluten-free diet (strictly) for three months

You have nothing to lose by being tested, and potentially, quite a bit to gain.

Canadian Karen Community Regular

I agree that there is a very strong liklihood that you could be celiac, but I do think you definitely need to get your thyroid checked also. Hypothyroidism could cause some of those symptoms as well (also, hypothryoidism is linked to celiac so there is a very good possibility it is a combination of the two that you have - like me!! :P )

If getting tested by a doctor is problematic, I would highly recommend Enterolab. I have heard many good things about their testing and results from posters here.

Either way, you definitely need to get tested to find out one way or another....

Welcome to the board!!! ;)

Karen


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



Celiac.com Sponsor (A8-M):



Claire Collaborator
What do you guys think, have I finally found what has made me miserable for so many years?  Thanks so much for your time.

<{POST_SNAPBACK}>

Hate to tell you but I think you came to the right place. Do an internet search for Dermatitis Herpetiformis - a skin disorder that is the sole property of celiacs. That is what you seem to be describing. Good luck namesake.

nettiebeads Apprentice

Your symptoms very well could be celiac disease. Have you been to other websites looking for info? A good one I found in very simple to understand terms is:

Open Original Shared Link

I would find a printout of all the symptoms of celiac disease, highlight all that you have and take it to a dr. Or try the gluten-free diet. That's how I was dx with celiac disease. And the diet challenge is a valid dx tool. Hope you get better soon!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

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

      New Celiac Mama in My 30s

    2. - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

    3. - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    4. - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    5. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,921
    • Most Online (within 30 mins)
      7,748

    Serena Rodriguez
    Newest Member
    Serena Rodriguez
    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
      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
      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
      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
      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
      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.