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What! I Have What?

carochip

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carochip Newbie
carochip
Posted

Hey guys! I am 26 mom of two and was eating a chocolate Chip cookie when the nurse called me with my results with my stomach biopsy a week ago. I will savor that moment for a long time since i won't be eating that kind of cookie for a long time.

I was tired all the time and had strong pains on my lower right side for years that would come and go for months at a time. I had a hard time having bowel movements except when i was in Target all the way on the other side of the store. I would puch my cart and kid real fast and just say, "it's ok, honey mommy will change your diaper really quickly!"

I am happy to hear fom you guys and know that I have people I can share stories that I will try to make fun of since this intolorance is not always fun. Have any of you tried ordering from the gluten free food store online? What's worth spending the extra dollars on?

thanks!

Caroline

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StrongerToday Enthusiast
StrongerToday
Posted

I mostly order from Knickiknick... great breads, wonderful treats - including chocolate chip cookies!! The shipping is worth it, only $10 up to a $200 order.

Welcome!

tiffjake Enthusiast
tiffjake
Posted
I mostly order from Knickiknick... great breads, wonderful treats - including chocolate chip cookies!! The shipping is worth it, only $10 up to a $200 order.

Welcome!

Ditto (to the welcome!) and ditto to the kinickiknick (sp?)! They are wonderful! A life saver! I hope you are able to adjust well! I, too, LOVED those chips ahoys, and could eat a sleeve in one sitting! But I have found gluten-free brownies that are better! LOL. Tiff

jerseyangel Proficient
jerseyangel
Posted

Hi! Welcome!! I had to laugh when I read your post--I can relate :D I get a lot of things from

Open Original Shared Link free.com/

I have a ton of other food intolerances, and am able to use most of their stuff. I love the French Bread Mix--it's excellent. Their piecrust mix, cake and cookie mix and brownie mix are great, too. Best of luck with everything--and feel free to come here anytime and ask anything :)

carochip Newbie
carochip
Posted
  • Author

Thanks guys for all the info. I kind of think this is exciting because of the all the new ways of eating. I ahve one more question, does Soy have gluten? I know that soy sauce has wheat? I'm confused. Is sushi safe?

tiffjake Enthusiast
tiffjake
Posted
Thanks guys for all the info. I kind of think this is exciting because of the all the new ways of eating. I ahve one more question, does Soy have gluten? I know that soy sauce has wheat? I'm confused. Is sushi safe?

Soy (like soy flour or soy beans) is ok. But soy sauce has wheat in it (maybe someone else on here knows why, I don't!) so not regular soy sauce. But they do make a gluten-free soy sauce. And sushi sould be ok as long as you don't get the kind of rolls with the fried shrimp. I got food poisoning from shushi, so I haven't had it in a LONG time, but from what I remember, my fav was simply avacado, crab meat (make sure they use real crab and not imitation meat), rice, seaweed wrap, and all of those are safe.

francelajoie Explorer
francelajoie
Posted

La Choy soy sauce is gluten free.

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momandgirls Enthusiast
momandgirls
Posted

Just receive our first order from www.glutenfreepantry.com - We've tried several of their things and, for the most part, really like them. Their brownies are absolutely fantastic - I had to tell people to stop eating them and leave them for my daughter!

hez Enthusiast
hez
Posted

Most commercial soy sauce is not gluten-free because it is fermented with wheat? Is that correct? You can easily find gluten-free soy sauce, I use San J. Another great find is for gluten-free pasta try Tinkyada. You will not be able to tell the difference! It is that good and worth the extra cost.

Hez

eKatherine Apprentice
eKatherine
Posted

Tamari is one type of traditional Japanese soy sauce that is wheat-free. Most brands that make tamari also make shoyu (regular Japanese-style), and often several kinds. Read the labels carefully.

TinkerbellSwt Collaborator
TinkerbellSwt
Posted

For your sushi cravings.. watch any with the imitation crab meat. almost all of it has wheat in it. I know somewhere out there there might be a brand that doesnt have wheat, but I have heard it isnt very good

But welcome to the board!!!

SueC Explorer
SueC
Posted

I absolutely love your attitude :) . Welcome.

This is a great place to ask questions and find lots of useful information. It has been a life saver for me many times!!! I hope you start to feel better quickly.

If you live in a city with health food stores you may find alot of gluten-free products on their shelves. There are lots of baking mixes you can get but it is pretty easy to substitute gluten-free flours into your favorite recipes.

Guest nini
Guest nini
Posted

Welcome to the board, and I have to say Kinnikinick is def. worth spending the money to order from them, especially because their Montana chocolate chip cookies are the closest thing I have found to satisfy my chips ahoy craving! Especially when they are dipped in milk!

I also shop from the Gluten Free Mall and again, worth the money. I order Barkat Porridge and Glutino Break Bars (Like a Kit Kat)

If you have a Whole Foods near you, you should be able to get a lot of gluten-free stuff, and check out health food stores, you may be surprised to find that you have stores near you that stock gluten-free foods and you won't need to spend the extra money on shipping.

Don't go out and buy a lot of replacement foods at first, stick with staples like Tinkyada pasta (I promise it's really really good) and make foods that are naturally gluten-free. Fresh fruits and veggies, meats that aren't breaded or marinated with wheat/gluten, potatos, rice, corn... there really is a lot you can eat, so don't worry, we will show you the bestest yummiest foods and help you with recipes and if you have a craving for anything in particular, don't hesitate to ask here and I'm sure one of us can help you satisfy your craving!

Mandy F. Apprentice
Mandy F.
Posted

Welcome to the board! I'm still pretty new, too. Everyone on here has been extremely helpful and it really makes this disease more managable!

As far as foods, I got a sampler pack from glutensolutions.com. It was pretty good and fairly affordable for everything you get. Also, the Kinnikinnick chocolate chip cookies really are excellent. I gave one to my roommate and she never even knew it was gluten-free!

Also, If you have a Whole Foods, they have a "gluten free grocery list" on their website to help you find the items more quickly.

Mandy

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  • Posts

    • 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

      By captaincrab55 · Posted

      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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