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

Pamela B.

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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.

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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!

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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

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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
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      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
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      Small Bowel Resection 12 inches

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      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Small Bowel Resection 12 inches

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      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

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