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

Please Help....


cherishlife

Recommended Posts

cherishlife Rookie

It was recommend that I stop eating wheat and gluten by my accupucture doctor about 8 months ago. I had stomach problems my entire life, but never equated it to wheat or gluten. I changed my diet and felt amazingly better in a few weeks. I was told that I should be tested for Celiac. My regular doctor did one blood test, not sure what it was, but I had not been eating wheat or gluten for several months at this point. It came back negative.

However, after reading a lot about the disease and the way I react when I accidently eat something with it in it, I really do think I have it. My sister was recently diganoised with it. She had a small intestine biopsey done.

I understand there are different ways to be tested. However, I read that you have to eat a pretty large amount of wheat prior to the testing. I don't think I could survive. I have four very small children and I homeschool.

Please help. I just moved to Portland and I do not have insurance yet so I can seek professional help at this time. If anyone has information or can direct me to where I can get accurate information so I can make wise decisions, I would greatly appreicate it. So, far my regular doctors in Southern Calf. had no idea what I was talking about.

I also wanted to find out if I need to have my children tested. I do not see any signs of it in any of them at this point. My daughter does have some food alergies.

Thank you!! :rolleyes:


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

You are correct. You will need to go back on gluten for a good 3-4 month eathing 3-4 slices of bread a day (or the equivalent) to hope for a positive result at this time.

Enterolab testing does not require you eat gluten, but your insurance (if you had any) would not cover it.

You can also opt for genetic testing since your sister has Celiac.

You already have your answer though. Do you really need a piece of paper to tell you that not eating gluten makes you feel better?

MissyH Newbie

I'm in the UK so the situation may be different where you are..but in the UK you can only get prescription foods if diagnosed as Coeliac or wheat intolerant..

The only tests I could have was a set of biopsies..even then only 3 were ok to test but I came back negative.

Luckily I was given a diagnosis of wheat intolerance so I do have prescription foods..

But..living without prescription foods can be done..and if you feel well and can cope without buying extortionately priced gluten-free food then just stick with avoiding gluten.

I would say it's quite likely you have it seeing as your sis does.

cherishlife Rookie
You are correct. You will need to go back on gluten for a good 3-4 month eathing 3-4 slices of bread a day (or the equivalent) to hope for a positive result at this time.

Enterolab testing does not require you eat gluten, but your insurance (if you had any) would not cover it.

You can also opt for genetic testing since your sister has Celiac.

You already have your answer though. Do you really need a piece of paper to tell you that not eating gluten makes you feel better?

Thank you for your input. I guess I thought that because I have children I should be tested to confirm I have it. I pretty much know that I do. I have all the symptoms, from the stomach issues to the skin issues as well as neurological issues. At what point should I test my children? Or should I? I read that some people do not have the outward signs and still could have it and be causing damage. At this point, I do not think my children have any of my symptoms. Thanks!!!!

nora-n Rookie

Here in Scandinavia, they diagnose more celiacs without symptoms than with symptoms. That is because they often test all relatives of diagnosed celiacs.

Yes, you have to be eating a good amount of gluten for the tests to be accurate, more li e0,3 per kg, that would be like 21 grams if you weigh 70 kg.

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
      131,919
    • Most Online (within 30 mins)
      7,748

    SB Willow
    Newest Member
    SB Willow
    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.