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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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  • Recent Activity

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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