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

Hi, Everyone... New Here, From Kansas City

Pamela B.

Recommended Posts

Pamela B. Apprentice
Pamela B.
Posted

Hi, everyone! I've spent hours upon hours reading the threads here, and I figured I should join since I have some questions about some stuff.

I'm 29 years old and live in Kansas City. I've had a bunch of health issues for the past 5 years or so. I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia back in 2007. I also have some mystery joint issues; the bottom pinky and ring finger joints on my right hand have become hyperextended and are swollen to the point to where I can't even make a fist. It's not arthritis because I have no joint/bone deterioration according to X-rays that I've had and I've never broken them. I have PCOS, general allergies (dogs, cats, ragweed, etc), and on top of all of that, I'm high-functioning autistic. No diabetes, no hypothyroidism. According to all the blood test results I've ever had, I am a perfectly healthy person.

Until I had a food intolerance panel done earlier this month, which shows a "borderline" gluten intolerance.

I never thought I had gluten issues because I never had any gastrointestinal issues. I even tried the gluten free diet two years ago because I thought that it might help, but I failed miserably. This time I've made it two weeks and am doing well. It helps that I had been on a low-carb diet last year and so this isn't anything radically different than what I had done before.

I'm really hoping this diet helps me.

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Hi, everyone! I've spent hours upon hours reading the threads here, and I figured I should join since I have some questions about some stuff.

I'm 29 years old and live in in Kansas City. I've had a bunch of health issues for the past 5 years or so. I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia back in 2007.

I'm really hoping this diet helps me.

Hi! I live in KC, too! Johnson County, KS. I think CFS & fibromyalgia are popular diagnoses in this area. Hope you get it figured out.

Pamela B. Apprentice
Pamela B.
Posted
  • Author

Hi! I live in KC, too! Johnson County, KS. I think CFS & fibromyalgia are popular diagnoses in this area. Hope you get it figured out.

Hi, Kareng! Nice to meet you. I'm in Grandview and get over to Johnson County often for different things, especially to go to Whole Foods.

KCPC Newbie
KCPC
Posted

Hi Pamela & Karen. I can recommend a fantastic group that is so very knowledgable & helpful on Celiac medical & lifestyle issues. It is a busy group with experienced people & newly diagnosed people.

Open Original Shared Link

Pamela, I did want to mention that you might want to be tested for Celiac disease. The food intolerance tests are not the same. You would need to have a "Celiac Panel" It is generally covered by insurance if you have symptoms & it certainly seems as you would qualify. The catch...you must have been eating gluten for at least a few weeks before you have the test or you risk a false negative. Celiac is an auto immune disease so you have to be tested for the antibodies.

CFS and fibromyalgia have been reported to be eased by a gluten free diet. It is difficult to do initially but the relief most people who do have Celiac or gluten intolerance get from being truly gluten free can be dramatic. For a Celiac, depending on how long gluten has been damaging your villi, it could take anywhere from weeks to months to see improvement. Some Celiacs who have villi damage find that removing dairy from their diet initially during their switch to gluten-free helps as well & then slowly reintroduce the milk products.

Please let me know if I can be of more help. I hope to "see" you both in the KC group & in Silly Yaks. BTW< I am in the KC northland.

kareng Grand Master
kareng
Posted

Hi, Kareng! Nice to meet you. I'm in Grandview and get over to Johnson County often for different things, especially to go to Whole Foods.

I find HyVee has a lot of gluten-free stuff. But it still seems like I have to go to both because one has something the other doesn't. :(

eatmeat4good Enthusiast
eatmeat4good
Posted

If your neurological Celiac, you might find avoiding gluten helps with the borderline autism. Some find great relief staying gluten free. I hope you do too.

GFreeMO Proficient
GFreeMO
Posted

Hi Pamela i'm from KC too. Platte County. I shop at the Hyvee in Lenexa a lot. I have found that they have the best stock of gluten free foods. They actually have more than Whole Foods. The Barry Road Hyvee is ALWAYS out of Udi's Bread. Anyway, welcome to the group!

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

Celiac.com Sponsor (A8-M):


Pamela B. Apprentice
Pamela B.
Posted
  • Author

Hi Pamela & Karen. I would like to invite you both to join a yahoo group that I started. It is not a busy group but we (I) try to post info that is significant to those who are Gluten Free in Kansas City.

Open Original Shared Link

I can also recommend a fantastic group that is so very knowledgable & helpful on Celiac medical & lifestyle issues. It is a busy group with experienced people & newly diagnosed people.

Open Original Shared Link

Pamela, I did want to mention that you might want to be tested for Celiac disease. The food intolerance tests are not the same. You would need to have a "Celiac Panel" It is generally covered by insurance if you have symptoms & it certainly seems as you would qualify. The catch...you must have been eating gluten for at least a few weeks before you have the test or you risk a false negative. Celiac is an auto immune disease so you have to be tested for the antibodies.

CFS and fibromyalgia have been reported to be eased by a gluten free diet. It is difficult to do initially but the relief most people who do have Celiac or gluten intolerance get from being truly gluten free can be dramatic. For a Celiac, depending on how long gluten has been damaging your villi, it could take anywhere from weeks to months to see improvement. Some Celiacs who have villi damage find that removing dairy from their diet initially during their switch to gluten-free helps as well & then slowly reintroduce the milk products.

Please let me know if I can be of more help. I hope to "see" you both in the KC group & in Silly Yaks. BTW< I am in the KC northland.

Hi! I'll definitely be joining at least the first group.

It'd be nice to know for sure if I had celiac disease, but I don't feel like doing a celiac panel is going to help me any. Since I was only diagnosed as borderline gluten intolerant, I can't imagine I'd have celiac disease with such a low result on my food intolerance panel. Plus the treatment is going to be the same no matter what and I'm already on a roll with my diet.

Pamela B. Apprentice
Pamela B.
Posted
  • Author

Hi Pamela i'm from KC too. Platte County. I shop at the Hyvee in Lenexa a lot. I have found that they have the best stock of gluten free foods. They actually have more than Whole Foods. The Barry Road Hyvee is ALWAYS out of Udi's Bread. Anyway, welcome to the group!

I'll have to check out the Lenexa Hy-Vee. Thanks for the tip!

majones Newbie
majones
Posted

Hi! I live in KC, too! Johnson County, KS. I think CFS & fibromyalgia are popular diagnoses in this area. Hope you get it figured out.

Do you know of a good support group(s) in the area?

kareng Grand Master
kareng
Posted

Do you know of a good support group(s) in the area?

This is the only one I know about.

Open Original Shared Link

Archived

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

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


  • Member Statistics

    • Total Members
      131,573
    • Most Online (within 30 mins)
      7,748
    Dawn Nauman
    Newest Member
    Dawn Nauman
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      How long does it take to gain weight?

      By cristiana · Posted

      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      How long does it take to gain weight?

      By petitojou · Posted

      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      How long does it take to gain weight?

      By petitojou · Posted

      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      Roommate search

      By ckeyser88 · Posted

      I am looking for a roomie in Chicago, Denver or Nashville! 
×
×
  • 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.