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Amazing

BamBam

By BamBam
in Coping with Celiac Disease

Recommended Posts

BamBam Community Regular
BamBam
Posted

When I joined this board in June of 04, I was #2166 - and if you look today, there is over 7,800 members on this board. I bet by the end of the year we will be 10,000 strong! I know that is a small number when you look at the whole world, but still, having 10,000 people to visit with about our disease/problems is just amazing!

BamBam

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DingoGirl Enthusiast
DingoGirl
Posted
When I joined this board in June of 04, I was #2166 - and if you look today, there is over 7,800 members on this board. I bet by the end of the year we will be 10,000 strong! I know that is a small number when you look at the whole world, but still, having 10,000 people to visit with about our disease/problems is just amazing!

BamBam

And you know what, it is SO awesome to have this board, since no one in my world understands this like you guys do!! :)

jenvan Collaborator
jenvan
Posted

It is amazing! Well, I guess the more people in here, the more people who will know out there!

Guest Viola
Guest Viola
Posted

And just think, this isn't the only Celiac board on the internet! I think a few doctors would have their eyes opened up if they checked these sites out once in awhile. They have no idea how many there are of us!

chrissy Collaborator
chrissy
Posted

i can't imagine how hard it would have been if my kids had been diagnosed before we had the internet-----i get so much info from the people on this board.

christine

Guest Viola
Guest Viola
Posted

Christine, you are right! It was really difficult before I had internet. We've only had internet in the Valley for almost 9 years. Before that we had party lines, and you can't have internet on party lines :lol: Now, does that tell you that we are living out in the sticks or what? :rolleyes:

I was all alone for 8 years with Celiac. At the time they thought it was extremely rare .. 1 out of every 10,000, now of course we know different and there are lots of Celiacs to talk to. It's so much easier and much more food than the bare meat, veggies and rice. And of course fresh fruit as there was no way for me to check on manufactures. Come to think of it, it never occured to me to even phone them ... guess I was a little dense in those days :lol:

Anyway ... I for one really appreciate all of you out here in cyber land!!!

i canary Rookie
i canary
Posted

This site has been a wonderful blessing for me. People who know what I'm going thru without me having to spend (make that waste) time explaining why certain things are a problem. It's helped my mental health so much - I don't feel like a alien being who got left on the wrong planet at birth. (Surely there is a planet out there that is completely gluten free - or am I thinking of paradise?) :P:P:P

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flagbabyds Collaborator
flagbabyds
Posted

There are so many, I remen=mber when the website was completely different. Like really weird and old, and now it is all high-techie. I am member number like 20 or something!

chrissy Collaborator
chrissy
Posted

shirley, where are you???? i thought party lines were done away with YEARS ago!!!!!--------and i was thinking that here in southern idaho we are way behind the times. (maybe it is just me??)

christine

kevsmom Contributor
kevsmom
Posted

You guys are my life! :)

Guest Viola
Guest Viola
Posted

Christine, we are in British Columbia, just the province north of you :D But we live on an acreage 35 miles from the nearest town. However there are a few villages in the valley. We are actually supposed to get broadband service out here by the end of the year, but I'm not holding my breath. :lol: So we are still on slow dial up internet service. But I'm not complaining ... we have internet, which means we have all of you out there! :P

debmidge Rising Star
debmidge
Posted

I always include this site when I speak to non celiacs or people who are interesting in knowing more. I tell them to visit Celiac.com and also to read the message board to see what those with Celiac are doing/thinking/living.

Also, I noticed that very often there are annon. or Guests viewing the pages.

jerseyangel Proficient
jerseyangel
Posted

We just always had the internet for the boys. I never used the computer much at all. Everything changed when I happened onto this site while looking up an ingredient. At first, I wasen't sure how to even post! I had to ask my son about a bunch of things. But I was so "hungry" for information and the ability to talk to others living with this, that I learned fast! Now, it's a regular part of my day to check in here. You guys are the best! (It's a little frightening, actually, to think of what the past 9 months would have been like without you) ;)

plantime Contributor
plantime
Posted

I'm glad this site is here. I would not have known about barley and rye without it, and I would still be sick. I just hope that visitors are able to find the answers to their questions here!

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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
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      By captaincrab55 · Posted

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    • 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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