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For A Seattle Celiac

BallardWA

By BallardWA
in Coping with Celiac Disease

Recommended Posts

BallardWA Rookie
BallardWA
Posted

Hello to each and every one of you who gave me so much comfort during this journey. I have found out that I was misdiagnosed with celiac disease, via a genetic test and a doctor (my 6th) with a messianic complex. After being gluten-free for nearly a year, I was still getting sick, and finally sought help from my 7th, and hopefully last doctor. She sat with all of my test results from the past year, put me on a cleansing fast, ran some tests and found out that my problems were related to my adrenals. 6 weeks out and I am finally starting to feel better. In any case, in my desire to embrace this change in my life, I bought a lot of books. I would like to give them to someone in the Seattle area that will use them. Some are cookbooks, some are just about the disease. I also have some unopened flours, mixes, etc, that are all perfectly good, less than 2 months old, and we all know how expensive that stuff is.

If someone will contact me, I will be happy to drop them off, or if anyone has any suggestions for what I can do with them other than post them on Craigslist.

I live in North Seattle.

May God bless all of you with restored health and happiness, you all deserve it.

Best,

Karen Fredericks

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cruelshoes Enthusiast
cruelshoes
Posted

I just sent you a PM. :)

pinkdljj Rookie
pinkdljj
Posted
Hello to each and every one of you who gave me so much comfort during this journey. I have found out that I was misdiagnosed with celiac disease, via a genetic test and a doctor (my 6th) with a messianic complex. After being gluten-free for nearly a year, I was still getting sick, and finally sought help from my 7th, and hopefully last doctor. She sat with all of my test results from the past year, put me on a cleansing fast, ran some tests and found out that my problems were related to my adrenals. 6 weeks out and I am finally starting to feel better. In any case, in my desire to embrace this change in my life, I bought a lot of books. I would like to give them to someone in the Seattle area that will use them. Some are cookbooks, some are just about the disease. I also have some unopened flours, mixes, etc, that are all perfectly good, less than 2 months old, and we all know how expensive that stuff is.

If someone will contact me, I will be happy to drop them off, or if anyone has any suggestions for what I can do with them other than post them on Craigslist.

I live in North Seattle.

May God bless all of you with restored health and happiness, you all deserve it.

Best,

Karen Fredericks

Hi Karen,

I'm so glad you found out what really going on with your body. It can be a confusing and long journey. I live in the area and have two celiac children, girls, and then myself. I would love to have some of your books and other things. I would even be willing to pay something for them. I was diagnosed 8 months ago and then tested my two girls, one being 22 months and the other 11 years old. It is very expensive to feed our family and so I haven't boughten any cook books yet, I just refer to this site.

I would be happy to meet you somewhere. I live in the Millcreek area so I am further North than you are. Thanks for the wonderful offer.

Blessings,

Leslie

P.S. My naturopath tested my adrenals and they are very low as well. She has me on high C, B5, B12 shots, progesterone, DHEA and B complex. May I ask what you are doing to get your adrenal function back up? Thanks!

Presto Rookie
Presto
Posted

Hi!

Has everyone else cleaned you out already? I would be happy to make a drive in the pursuit of things to help me on this journey. I will PM you too.

sickchick Community Regular
sickchick
Posted

What a sweet offer, Karen.

Be well! :)

cruelshoes Enthusiast
cruelshoes
Posted

Karen - I don't know if you are still around. It was great meeting up with you today. Thank you for your generosity in sharing your books and supplies. My intention is to set up a lending library in our support group, and your books will make a great addition! I wish you good health, and I hope you are on the road to feeling really well.

Thanks again!

BallardWA Rookie
BallardWA
Posted
  • Author

Karen - I don't know if you are still around. It was great meeting up with you today. Thank you for your generosity in sharing your books and supplies. My intention is to set up a lending library in our support group, and your books will make a great addition! I wish you good health, and I hope you are on the road to feeling really well.

Thanks Colleen,

I'll be taking this site off my bookmarks list now, be well.

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

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      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Son's legs shaking

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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