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Omg...i Might Be On To Something

Rachel--24

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CarlaB Enthusiast
CarlaB
Posted

Okay, I can't sit around here and play this morning ... I had to do a C. Diff. test and it has to be taken to the hospital/lab within two hours ... this is the worst test yet that I've had to do ... at least with Enterolab you just put the lid on the container ... this one involved transfer. <_<:o:ph34r:

After that I'm going to work out. I LOST two pounds yesterday ... I just don't eat as much when Adam's gone ... he makes me eat, but I have no appetite. He's on a golf trip. I'm so glad he could go, he deserves some fun. It's been a rough year. He hesitated to go, but since Morgan is going to be home, there's another driver if my herx starts before he gets back.

Patti, mornings are rough for me. I usually have about the same schedule as you said ... go to sleep between 10:30 and 11, wake up between 1 or 2, but for me that's because I took a lot of supplements right before bedtime, so drank a lot of water. Then I sleep till my youngest wakes me. I usually lay in bed on my laptop for another hour or two, but can't today.

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dlp252 Apprentice
dlp252
Posted

Carla - love that bag! Bet Morgan will love it too!

Yep, had to do that C.Diff test last year and had to do another one for other stuff this year. Hate it. :P

jerseyangel Proficient
jerseyangel
Posted

Carla--Cute bag! Please wish Morgan a happy birthday for me :)

I'm a Dooney and Bourke girl :ph34r: One of my many weaknesses B)

Is that the test where you have to take samples over 3 days and put them in 7 little bottles with a disgusting-smelling solution? I had to do that a couple of years ago. <_<

I apologized to the lab assistant who had to take them from me and label the bag....

rinne Apprentice
rinne
Posted
Dear Rinne,

I will let you know as soon as things are up and running! It could take a while. Since I am not a Web master, I am going to have to figure everything out by myself. That is not going to be easy.

I also need to put together an e-catalog.

We'll look forward to seeing it. :)

So, they had to "squeeze me in" I almost left because I was so upset and feeling so sick, but I thought "wait a minute, where do I need to be more? work or taking care of my health?" so I stayed. By the time I got in to see her I was crying. I basically told her everything that's been going on and her three theories are:

1. Crohn's :ph34r:

2. refractory sprue :ph34r: :ph34r:

3. Lyme disease (can you believe it?)

Yup. to Lyme. Sorry you had such a rotten day, sending hugs. :)

I actually never get enough rest...except maybe sometimes on the weekend. I average about 5 hours of sleep a night...which isnt too good for someone whos sick. :ph34r:

I'm like that too although sometimes I can nap during the daytime for an hour or so.

Yeah...thats what they said. That if all this happened when I was one....instead of 31...I would definately be at high risk. Denise seems to think so too...basically its all the same type of issues. My problems are very similar to what they see with the Autistic kids.

Jenny McCarthy has a son with autism and she has a book coming out in September, I saw her on The View this week and she said she was going to use her "big mouth to blow the lid off it" basically. Her son is five years old now and she also said there is hope.

Hey....I just saw that its Morgans Birthday!!

Happy 19th Birthday Morgan!!!!! :)

Belated HAPPY BIRTHDAY Morgan, cool purse, lucky girl. :)

Does chlorella make you feel kinda sick to your stomach and hungry and the same time?

No, but I think there is a percentage of people it just doesn't agree with, the container I have says that if you take it and burp a lot then discontinue use.

I actually hate the idea of disability...not because I want to work so much but mostly because I still feel like I'm able to work. The problem with that is that it is getting harder and harder to get myself to work every day and I'm afraid that at some point I'm going to get the point where I've pushed myself too much and that that will just make things worse and harder to recover from. My adrenals are just not coming back, and I can actually feel that process happening.

I can't sleep even taking four 3mg melatonin tablets, 2-4 valerian root tablets, two 100mg 5-HTP tablets. Somehow I keep thinking that if I could just sleep when my body WANTS to sleep, I'd get enough. The work schedule I have now just doesn't let me do that. :(

I think you have just made a real case for taking some time now and not waiting until it becomes worse. Please take care of yourself. I'm wondering about B vitamins, how are your levels? I know that when I was waking up after feeling like I hadn't rested at all that my B12 levels were low and that taking the sublingual B and the shots really seemed to have helped this. I'm still sleeping only five hours of so but it feels like I do rest during that time.

Now I'm off to take my Chlorella, that lovely green ocean breeze brew. :P:lol:

dlp252 Apprentice
dlp252
Posted
I think you have just made a real case for taking some time now and not waiting until it becomes worse. Please take care of yourself. I'm wondering about B vitamins, how are your levels? I know that when I was waking up after feeling like I hadn't rested at all that my B12 levels were low and that taking the sublingual B and the shots really seemed to have helped this. I'm still sleeping only five hours of so but it feels like I do rest during that time.

Thanks Rinne! Well, I just had my annual exam and nothing came up there. The LLMD I saw is running a vitamin/mineral panel I think so I'll know more from that--but not until the 15th when I see him next.

I take a liquid B vitamin and a sublingual B-12, plus a multiple which has some Bs in it. The multi is a tablet and I'm going to see if I can take the liquid one that Scott suggested in my ART session--maybe that will absorb better. Anna (BioSET lady) sells it now at her clinic so they can test it before I buy. :P I wouldn't care how much sleep I get if I felt rested and I USED to feel rested even on 5 hours a night, so this is definitely different, lol. I've never been a good sleeper, but I've always felt rested and had lots of energy, this is just very different.

In addition to those supplements, Anna has me on something called adaptocrine which is supposed to help the energy. She is also starting me on NT Factor as soon as they get it in...it's been on backorder forever. Scott also suggested Transfer Factor for the lyme, but that has colostrum in it so I have to check if that is okay to take with a casein intolerance.

DingoGirl Enthusiast
DingoGirl
Posted

Morning, all.....

Just a quick note - - Donna, I am worried about you! I am just exhausted reading about your non-sleep schedule. I had insomnia for almost a decade, and I nearly went MAD. took all those herbal things and many vitamins and warm milk and on and on and on. finally in 1998 my wonderful doctor in Monterey just prescribed something for sleep. And I am wondering about that for you - have you looked into Ambien or Lunesta? they can sometimes be quite good even for short-term use....I suspect you won't like the idea, I did not either but came around to it when I was crying almost every day from lack of sleep. And I really DO support the idea of disability for you....you can work again and work part-time, but you have to wait a while to begin working. I went back to work too soon, and am now repaying the government for that......heinous. But your body needs so much more rest than it is getting to recover! Sleep is very important and so restorative.....I seriously don't know how you do it. (and others of you who are so sick and working full-time.)

Well, Grey's WAS really weird! I am not so sure about this new spinoff show - - those characters really annoyed me.....we will see. :huh:

I must get ready for work. And then a long, lonely weekend ahead, practically everyone I know will be out-of-town. :( Just the dingos and me, and lots of work for me to do around here. More heinosity!!!

Happy Friday, everyone. :)

AndreaB Contributor
AndreaB
Posted
Ok last night I ate peanut butter well actually I made cold seseme noodles(using peanut butter- its one of those foods I have beeen craving for so long)- it was really good and (fingers crossed) I think it actually went ok!!

Yay for a splurge that has agreed with you.......so far. :) Hope all continues to go well today.

I can't sleep even taking four 3mg melatonin tablets, 2-4 valerian root tablets, two 100mg 5-HTP tablets. Somehow I keep thinking that if I could just sleep when my body WANTS to sleep, I'd get enough. The work schedule I have now just doesn't let me do that. :(

Does the metals/lyme have anything to do with this? It would be nice if you could take some disability time to focus on treatments and getting your adrenals built back up.

What's particularly good about them is that fact that I don't have to make them!! That ALWAYS makes food taste better!

Isn't that the truth!

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AndreaB Contributor
AndreaB
Posted
She had an exam last night at 7PM and is coming home today for the summer! YAY! Here's what I got her for her birthday (the blue one) ... Open Original Shared Link ... That's what Adam gets for being out of town when I went shopping! :P

Happy birthday to Morgan! She'll probable really like that!

The LLMD I saw is running a vitamin/mineral panel I think so I'll know more from that--but not until the 15th when I see him next.

Can't wait for your appointment and results.

I took sublinqual b12 saturday and got a raging headache. I have yet to try it again.

Not too thrilled with the idea of the chlorella again. My stomach was a little queasy all day and I was hungrier than normal. <_<

I must get ready for work. And then a long, lonely weekend ahead, practically everyone I know will be out-of-town. :( Just the dingos and me, and lots of work for me to do around here. More heinosity!!!

Try to make the best of it. Sometimes a quiet weekend can do wonders.

CarlaB Enthusiast
CarlaB
Posted
Is that the test where you have to take samples over 3 days and put them in 7 little bottles with a disgusting-smelling solution? I had to do that a couple of years ago. <_<

No, this one you need a stool sample, but it's not like Enterolab where the container is the same one you went in ... you have to transfer it to another container. YUCK! Then you have to have it to the lab within two hours.

CarlaB Enthusiast
CarlaB
Posted
colostrum in it so I have to check if that is okay to take with a casein intolerance.

I checked into that a while back and decided it did have casein. I don't think I got a clear answer though.

nikki-uk Enthusiast
nikki-uk
Posted
Hey Nikki:

Your Queen is coming to the Colonies. Jamestown is about two hours away, but I am enjoying the news coverage.

I also think that she is going to visit Virginia Tech, where they have had such tragedies. Looking forward to the visit.

Lisa, I read it today in the paper!

Don't you just love all that 'pomp and ceremony'!!

Well blow me if I didn't forget to eat the peas! :lol:

Is this phrase now in the Rachelville Dictionary?? :lol::lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Okay this is off the subject, but I have two salmon in the freezer I got from whole foods. They are from a alaska fishery and are whole foods brand. Should I eat them considering there might not be any mercury or just minimal. I need an idea on what to eat for lunch, My naturopath suggested I could eat salmon as long as it comes from a good source and not farmed. On the Happy Feet insert they list the best to the worst fish to eat and they put alaskan salmon as the best choice. So any suggestions would be great thank you.

LIsa

I dont eat any fish at all...I was told to just avoid it for now. I'm pretty sure like Andrea said all fish have some amount of mercury in it. Salmon is better than some other fish....and anythings better than tuna....but still they've all got some mercury.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Bev,

Not sure what time you're appt. was at today but I'm thinking of you....hoping all is going well. ;)

jerseyangel Proficient
jerseyangel
Posted
Bev,

Not sure what time you're appt. was at today but I'm thinking of you....hoping all is going well. ;)

Me too, Bev :)

CarlaB Enthusiast
CarlaB
Posted

Morgan is on her way home!

I jokingly told her not to look at the thread because we were talking about her birthday present since everyone was wishing her a happy birthday. She told me she checks in once in a while and almost did this morning! I had no idea she ever looked at it!

Bev, can't wait to hear about your appt.!!

AndreaB Contributor
AndreaB
Posted
Bev,

Not sure what time you're appt. was at today but I'm thinking of you....hoping all is going well. ;)

Me too, Bev :)

Me three Bev. :):P

AndreaB Contributor
AndreaB
Posted
I jokingly told her not to look at the thread because we were talking about her birthday present since everyone was wishing her a happy birthday. She told me she checks in once in a while and almost did this morning! I had no idea she ever looked at it!

:o Glad she didn't get in here this morning.

dlp252 Apprentice
dlp252
Posted

Arggg...haven't been able to get into this website for most of the day, lol. :P

Just a quick note - - Donna, I am worried about you! I am just exhausted reading about your non-sleep schedule. I had insomnia for almost a decade, and I nearly went MAD. took all those herbal things and many vitamins and warm milk and on and on and on. finally in 1998 my wonderful doctor in Monterey just prescribed something for sleep. And I am wondering about that for you - have you looked into Ambien or Lunesta? they can sometimes be quite good even for short-term use....I suspect you won't like the idea, I did not either but came around to it when I was crying almost every day from lack of sleep. And I really DO support the idea of disability for you....you can work again and work part-time, but you have to wait a while to begin working. I went back to work too soon, and am now repaying the government for that......heinous. But your body needs so much more rest than it is getting to recover! Sleep is very important and so restorative.....I seriously don't know how you do it. (and others of you who are so sick and working full-time.)

Thanks dear one! I'm almost at the point where I'd consider ambien or lunesta. Over the counter stuff doesn't do anything at all, and stuff like benedryl just keeps me MORE awake, lol. If the natural stuff I'm taking isn't working I might as well just cut it all out. Years ago, one of my co-workers gave me one of her sleeping pills...I think it was ambien--I cut it in half and took one half and that seemed to work okay back then. We'll see what the lyme guy says.

Does the metals/lyme have anything to do with this? It would be nice if you could take some disability time to focus on treatments and getting your adrenals built back up.

If I had more time off available I'd use that for a few weeks, but I've been so sick over the last 2 years that I've got virtually none left. I get SIX weeks a year!!! It's all but gone. I have about 7 days left but I'm afraid to use it, lol.

I took sublinqual b12 saturday and got a raging headache. I have yet to try it again.

Not too thrilled with the idea of the chlorella again. My stomach was a little queasy all day and I was hungrier than normal.

Hum, I've been getting lots of headaches lately too. I used to NEVER get headaches.

I checked into that a while back and decided it did have casein. I don't think I got a clear answer though.

That's what I was afraid of. :(

Is this phrase now in the Rachelville Dictionary??

I do believe it's official now. :P

Not sure what time you're appt. was at today but I'm thinking of you....hoping all is going well.

Ditto and ditto.

Mtndog Collaborator
Mtndog
Posted

Oh you guys :wub: :wub: :wub:

I need to learn how to quote multiple people in one post. It all started with the Food Channel as Porn for celiacs (SusieQ of course :P) and got better from there. happy Birthday Morgan!

OK. The appointment went really well. Based on what I've researched, read on this thread etc. he knew his stuff. So it lasted 2 1/2 hours and I go back on Wed to have the blood drawn. He was glad that I am having the endo next Friday because he thinks it's probably a complex problem (inc. Lyme) AND my GI can take a tissue sample from my small intestine that can be analyzed for Lyme.

Based on my symptoms and what I told him and his very long, occasional humorous exam (including a LIME GREEN blood pressure cuff and his nurse noticing that my sy sweater, crocs and underwear all matched :lol: ) he thinks Lyme is a definite possibility. He did not want me to start antibiotics for at least a month because of the obvious shape my gut is in right now.

So, I'm taking Theralac probiotic 1x per day for the next thirty days to get my gut ready for potential antibiotic treatment. He said if my gut can't handle antibiotics, I can do an injectable one.

He explained EVERYTHING in great detail and much of it I at least recognized from reading here and other places. See you guys ROCK!!!!!

He also gave me this really interesting article "Bell's Palsy of the Gut and Other GI Manifestations of Lyme and Associated Diseases" which blew my mind because I was thinking I had motility issues and this article explains why I might!

I'm pretty tired (he's an hour away and it was a 2 1/2 hour appt so it took me like 5 hours total) but I feel much more optimistic about things then I did yesterday. :)

Thank you all so much!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

CarlaB Enthusiast
CarlaB
Posted

Bev, I'm so glad your appt. went well. It feels good to finally be at the right doctor, doesn't it?

I take Theralac, it's very good. It still wasn't enough to take care of my GI issues, so they also started me on VSL#3, which I like, too. They have started me on injections because of my GI issues, but I still take a lot of orals. Morgan gets to learn Sunday from a friend of mine who's a nurse how to give me the injections. Adam is opposed to doing it. He said he will, but he doesn't want to. I don't think he likes needles ... he was funny when I was going to acupuncture and he was always scared when I got the epidural during labor.

I'm glad it went well, and I'll be anxious to hear your blood test results!

dlp252 Apprentice
dlp252
Posted

Yay Bev!!! I'm so excited to hear how well your appointment went!!!

jerseyangel Proficient
jerseyangel
Posted

Wow Bev--I'm so-o-o happy that you are finally getting some much awaited answers! :D

Gives me hope--I just pray that my new doctor is as up on all of this as yours is. A lot of our symptoms have mirrored each other's. Wow.

NoGluGirl Contributor
NoGluGirl
Posted

Dear Carla,

Happy late birthday to Morgan! That purse is nice! I am a high heels woman! The perfect high heel is skinny and 2 1/2 inches approximately in height. It can be a sandal or a closed-toed pump. :)

That is one classy spa! No wonder big names stay there! It is wonderful they actually are so considerate of the gluten issue. So many places do not care. Maybe we should have the Rachelville Reunion there!

Dear Donna,

If you can get disability, take it. You need it! I used to go to school on 3 hours of sleep, sometimes none at all. I do not know how I did that. Now, my sleep issues really cause difficulties. I have had difficulty staying on a sleep cycle since I was 17. Right now, my thyroid is messed up again, and I do not sleep much. I feel hyped up even when I am dead tired! That bump in my neck the size of a golfball is what tells me my thyroid is hyper again. It is just thryoid tissue, actually. I can thump it and make noise! :lol:

Dear Nikki,

We have added your phrase to the Rachelville Dictionary! :lol: It is official! Blow me if we didn't add another phrase! :lol: That is just too much fun to say! We love it!

Dear Susan,

You are not kidding, it really is porn on the Food Network for us! :lol: It is so beautiful! Food is like art, but edible! Cakes, cookies, and all kinds of other things are so amazing! You just cannot change the channel!

Dear Mia,

I am glad the sesame noodles set alright. :) I just racheled the last of my Stax, and hope to God I will not suffer for it. :unsure: It is so unfair that everyone else gets to eat whatever they want and not worry about becoming violently ill from it. :( If you like sesame noodles, I think I know something else you would like. A popular street food for a snack is Dan-Dan Noodles in China. The sauce is made with chicken broth, peanut butter, scallions, chili oil, and bacon pieces. Instead of wheat noodles, we could just replace them with rice noodles. It would be so good!

Dear Rachel,

Well, I have been more careful about the condiments. It seems to help a little. Candida sucks! I hate yeast! :angry: If I have Lyme, I doubt I will be able to get rid of it until that is treated, though.

That brings me to another worry. My teeth are crumbling off by the day. If I do not do something, I am going to lose my teeth! I am scared!

Either way, I feel like I am screwed. :( If I have Lyme, I will probably have to get the root canals out, but extracting the teeth can cause cavitations. That is just as bad as far as germs are concerned. I know my grandfather will not pay to get them taken back out. However, I really do not feel I have a choice. Do you think maybe if I get Lava Crowns with composites I might be alright?

Dear Bev,

We are pulling for you! We know what it is like to be sick and scared! That is for sure! It sounds like your doctors are working with you. This is great! Stay optimistic, and I am sure good things will happen for you!

Dear Rinne,

I will certainly let you know when the site is up. I am busy trying to get some mail-outs ready for a few local places. They could be good clients. Some of the items I sell are very unusual. I can literally furnish you whole house or apartment! :lol: I have furniture, scented and decorative candles (many with lead-free wicks), toys, cookware, nesting baskets, collectible dolls, MP3 player cases, luggage, pajamas, you name it! There is not much I do not sell! :)

Dear Claire,

I love the big 80s hair! I do not think I could ever get my hair to do that again! My hair, even at shoulder-length is really heavy. It fell flat within an hour of it getting done when I tried that last! I have some cool things I can do with my hair now, though. Since it is long and black, there are some styles I can play with that I normally could not do.

Sincerely,

NoGluGirl

AndreaB Contributor
AndreaB
Posted
If I had more time off available I'd use that for a few weeks, but I've been so sick over the last 2 years that I've got virtually none left. I get SIX weeks a year!!! It's all but gone. I have about 7 days left but I'm afraid to use it, lol.

Hum, I've been getting lots of headaches lately too. I used to NEVER get headaches.

I don't blame you for wanting to take the last 7 days you have left. Have you checked into the possibility of getting disability? I don't even know how one goes about that. :unsure:

So do you think your headaches are from the b12?

I chickened out on the chlorella today. Just didn't want a queasy stomach all day again. Talitha said she was burping up "spinach" taste all day. I'm thinking I should skip this with her....possibly me to and just do challenge/chelation next year. I wonder if Wild Oats will take stuff back that is opened, like Whole Foods does. :unsure:

He explained EVERYTHING in great detail and much of it I at least recognized from reading here and other places. See you guys ROCK!!!!!

He also gave me this really interesting article "Bell's Palsy of the Gut and Other GI Manifestations of Lyme and Associated Diseases" which blew my mind because I was thinking I had motility issues and this article explains why I might!

So glad everything went to well!!! :D That article he gave you sounds interesting too.

I'm curious about the tissue sample and how they go about testing that for lyme. I would assume he thinks that's a problem area for you.

So excited for you and I'll be waiting anxiously for your results at the end of the month (or so). :)

Gives me hope--I just pray that my new doctor is as up on all of this as yours is. A lot of our symptoms have mirrored each other's. Wow.

I hope your appointment goes well too Patti. Do you think lyme is looking like more of a possibility.....or one more thing to rule in or out.

jerseyangel Proficient
jerseyangel
Posted

Andrea--At this point, I just don't know.

I have to be extremely careful with my diet or I get sick. I get nausea, D, cramping, my anxiety kicks up, I get dead tired, also that head fullness/pressure that I think Rachel gets--or used to get....I hate going out except for very familiar places.

And I don't mean with just gluten, but with all the other stuff.

I take very good care of myself, my diet is very clean, I get enough rest, good water--I don't work, so I don't have the stress of having to be someplace every day.

It makes sense that there's something else possibly going on--or maybe I had a lot of damage from being undiagnosed for so long that this might just be it for me.

Either way, I'd like to know in case anything can be done.

Gosh--is anyone else as bored with me as I am :lol:

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      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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