Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Rachelville 2


Rachel--24

Recommended Posts

AndreaB Contributor

Chelsea,

I hope you get better and better each day. I know it must be hard, especially with the pain. HUGS.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 1.7k
  • Created
  • Last Reply
penguin Community Regular
Oh Chelse, I'm so sorry. I imagine your intestinal tract took a severe beating with all of the gluten for so long, so things have to be pretty stirred up. I don't really know much about the spasms (sounds a little bit like Rachel's alien baby), I would think it was from an irritant of some kind? It has to be very frustrating for you. Hopefully as you continue with the gluten-free diet you will heal and see some improvement. Hang in there!

I've had these for 3 or 4 years now. When they first started, I had them about once a week. They eventually tapered off to about where they are now, once every month or two. It's not like the alien baby, it's muscle spasms in my stomach muscle that are INCREDIBLY painful, about an 9 on the smiley face pain scale. I have yet to find a specific trigger, sometimes I can trace it back to something like orange juice, sometimes stress, sometimes irritating foods, but there is never a clear cut trigger. There is no rhyme or reason to it at all, and it never happens the same way twice. This time it could have been from the endoscope and it was a delayed reaction to that irritation, there's no way to know. I've tried diet changes, like no greasy food, carbonated drinks, no acidic food, no caffene, no milk (individually and all at once) and it would still happen. You're right, IT'S VERY FRUSTRATING!!!

Oh, and to add insult to injury, it happens whether or not I'm on gluten. I guess I can make that a more definitive statement on that front after I've been gluten-free for more than a year.

queenofhearts Explorer

I'm feeling a little stronger these days... I think maybe just maybe I'm starting to absorb iron. I hope so anyway! I get tested again in a month & will know some answers then.

Also yesterday I FINALLY convinced my sister to be tested for Celiac! She has so many symptoms, arguably more than I do (though no anemia), but until yesterday she kept brushing off my suggestion. She's still not going to do anything until her yearly physical in November, but at least she promised to ask for the tests then. I'm so happy because I have a feeling this diet could really be the answer for her.

Green12 Enthusiast
That's interesting, Julie :lol:

Actually, makes perfect sense! How've you been?

I'm good Patti, how are you?? We are always missing each other lately on the board :lol:

I've had these for 3 or 4 years now. When they first started, I had them about once a week. They eventually tapered off to about where they are now, once every month or two. It's not like the alien baby, it's muscle spasms in my stomach muscle that are INCREDIBLY painful, about an 9 on the smiley face pain scale. I have yet to find a specific trigger, sometimes I can trace it back to something like orange juice, sometimes stress, sometimes irritating foods, but there is never a clear cut trigger. There is no rhyme or reason to it at all, and it never happens the same way twice. This time it could have been from the endoscope and it was a delayed reaction to that irritation, there's no way to know. I've tried diet changes, like no greasy food, carbonated drinks, no acidic food, no caffene, no milk (individually and all at once) and it would still happen. You're right, IT'S VERY FRUSTRATING!!!

Oh, and to add insult to injury, it happens whether or not I'm on gluten. I guess I can make that a more definitive statement on that front after I've been gluten-free for more than a year.

Is there a name for it, or do the doctors not really know anything about it? That makes it difficult when you can't pinpoint it to anything. I'm like you with my angioedema, no rhyme or reason for it, or anything to do about it. But I keep trying to find the answers. I am hoping that things improve for you the more you heal :)

I'm feeling a little stronger these days... I think maybe just maybe I'm starting to absorb iron. I hope so anyway! I get tested again in a month & will know some answers then.

Also yesterday I FINALLY convinced my sister to be tested for Celiac! She has so many symptoms, arguably more than I do (though no anemia), but until yesterday she kept brushing off my suggestion. She's still not going to do anything until her yearly physical in November, but at least she promised to ask for the tests then. I'm so happy because I have a feeling this diet could really be the answer for her.

Good to hear you are feeling stronger, that's a great sign that things are moving in a positive direction.

And great news about your sister! I wish I could get my family on a gluten-free diet, but they don't take it seriously or think it's a problem for them :(

2Boys4Me Enthusiast
Interesting is a word I use when something "interests" me.

All right then, you're off the hook. I'd heard "interesting" as a euphemism for "ugly" so many times with my dog that it rubs me the wrong way sometimes.

Person to my husband (gushing): Oh your dog is beautiful!

Husband (beaming): Thank you.

Person to me (with a tone I can't decsribe - maybe horror): Oh. Your dog is interesting too.

My dog now gets called a "Goober" a lot and since it suits him, I'm not offended. He is a goober. But my little Scout was beautiful. In an "interesting" kind of way.

Meanwhile, Chelsea, if you're putting up with this pain all the time, childbirth will be a gluten-free cake walk when the time comes.

AndreaB Contributor

Leah,

That's great on both fronts! :D

Chelsea,

Hopefully this is something that will heal in time as you are gluten free longer. It must be very annoying not being able to pinpoint something.......same for you Julie. :(

My family is also one that would bury their heads in the sand. Mitch's ex was going to look into testing. She says she has IBS. We were wanted Mitch's second oldest tested since he has bipolar and diabetes. Diabetes just diagnosed. He doens't show any symptoms either but we know all the boys got one celiac gene from Mitch since he has two. Mitch is the only one in our family that isn't active on the intolerance/celiac but he's still gluten free.

Rachel--24 Collaborator

Hi everyone. :)

Normally I dont do drive-by's but.....

Just wanted to say hello... :D

I'll be having a pretty busy weekend so might not be on too much but will try to pop in here and there. :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



queenofhearts Explorer
Hi everyone. :)

Normally I dont do drive-by's but.....

Just wanted to say hello... :D

I'll be having a pretty busy weekend so might not be on too much but will try to pop in here and there. :)

Hail to the Chief! Enjoy your weekend!

AndreaB Contributor
Hi everyone. :)

Normally I dont do drive-by's but.....

Just wanted to say hello... :D

I'll be having a pretty busy weekend so might not be on too much but will try to pop in here and there. :)

Hi Rachel.....if you're still on here.

Have a great weekend and I'll talk to you later. :P

swittenauer Enthusiast
Hi everyone. :)

Normally I dont do drive-by's but.....

Just wanted to say hello... :D

I'll be having a pretty busy weekend so might not be on too much but will try to pop in here and there. :)

Same here. I've been pretty busy myself. My husband & I were supposed to go toBristol this weekend but decided to pass it up at the last minute because our daughter was invited to a slumber party that she really wanted to attend. We went antique shopping all day yesterday & went out to a lake at a state park & took a walk around it. It was a nice day. We are getting ready to go pick Kate up & then go racing. wish me luck. Well, I'll talk to you all later.

Green12 Enthusiast

Just checking in, doing a drive by myself!

Hope everyone is having a great weekend, see you all back in the ville soon :lol:

Carla, did you make it to the Commodores last night, and how were they if you did??

Rikki Tikki Explorer

Hi Julie: Just taking a break from trying to catch all the tumbleweeds, I tell you, I take a couple of days off and look what happens! No I haven't checked anything off the list, hopefully soon! Thank-you for asking, you are always so kind.

Also yesterday I FINALLY convinced my sister to be tested for Celiac! She has so many symptoms, arguably more than I do (though no anemia), but until yesterday she kept brushing off my suggestion. She's still not going to do anything until her yearly physical in November, but at least she promised to ask for the tests then. I'm so happy because I have a feeling this diet could really be the answer for her.

Good for you Leah, I think I have mentioned that my mom and brother were diagnosed in the last year, my brother wasn't even sick but had lots of damage, no villi and it had already affected his bones. :unsure::unsure: I had been after him for at least a year prior just to get tested, he had asked his doctor who asked him why he would want to go on such an awful diet if he wasn't having any symptoms! :angry:

Another brother did not go get tested but was quite ill and has had positive results going gluten free

It seems like some people are of the mind that this is just the disease of the month! Oh, well gotta let it go, sorry for the rant

AndreaB Contributor

Rant away Tavi.

I'd be upset with the doctor of your brother also. :angry:

Why do most doctors etc think that this diet is so hard?

I'm glad they found out about celiac and can now work towards better health.

Rikki Tikki Explorer
Rant away Tavi.

I'd be upset with the doctor of your brother also. :angry:

Why do most doctors etc think that this diet is so hard?

I'm glad they found out about celiac and can now work towards better health.

Just a thought Andrea, they might then have to admit they are not always right? :lol::lol::lol:

CarlaB Enthusiast
Carla, did you make it to the Commodores last night, and how were they if you did??

I did make it! Thanks for asking. I was a pretty fatigued, but enjoyed it nonetheless. I slept on the way home LOL. They were GREAT! I had pretty low expectations since there are only two original members and you don't really hear about them anymore ... but I always like their music ... they were quite the showmen and I highly recommend seeing them! Some concerts are a disappointment, but theirs was a pleasant surprise, even when I was feeling crummy.

queenofhearts Explorer
Hi Julie: Just taking a break from trying to catch all the tumbleweeds, I tell you, I take a couple of days off and look what happens! No I haven't checked anything off the list, hopefully soon! Thank-you for asking, you are always so kind.

Good for you Leah, I think I have mentioned that my mom and brother were diagnosed in the last year, my brother wasn't even sick but had lots of damage, no villi and it had already affected his bones. :unsure::unsure: I had been after him for at least a year prior just to get tested, he had asked his doctor who asked him why he would want to go on such an awful diet if he wasn't having any symptoms! :angry:

Another brother did not go get tested but was quite ill and has had positive results going gluten free

It seems like some people are of the mind that this is just the disease of the month! Oh, well gotta let it go, sorry for the rant

I'm worried about my sister's bones too-- she's had back pain ever since I can remember & I worry it might be related. She's younger than I but has had dairy intolerance for a long time, plus candida, depression & anxiety... well, at least she's getting tested. I just hope her doctor isn't such a dork...

I did make it! Thanks for asking. I was a pretty fatigued, but enjoyed it nonetheless. I slept on the way home LOL. They were GREAT! I had pretty low expectations since there are only two original members and you don't really hear about them anymore ... but I always like their music ... they were quite the showmen and I highly recommend seeing them! Some concerts are a disappointment, but theirs was a pleasant surprise, even when I was feeling crummy.

Glad you got some fun in despite the mystery bug/ glutening.

CarlaB Enthusiast

HI MORGAN!!!!!

morganb Newbie
I hope it didn't mess up your schedule too much. :( I always hated having to rearrange everything.

Glad to hear that everything is going well and that you got a new job! That's great that you got a house. Should be much easier for you as far as cc issues. We will continue to await your muffin investigation. :D

I ended up finding an extra schedule in my orientation bag the next day....so everything worked out :) It wouldn't have messed me up in much, but I just wanted to have one for my own state of mind

I'm still feeling yucky ... :(

We're going to see the Commodores tonight. The concert's not till nine, so I'm going to have to rest all day so I can make it!!

Did you get some new "date" jeans to wear there? You didn't tell me yesterday that you were going to see the Commodores <_<

Good girl Morgan! The social scene has a way of sucking you in, it's great that you have your priorities set. If you balance the two you will do fine. I had a hard time myself doing that :ph34r:

:rolleyes::rolleyes::rolleyes:

Yea, classes sure got in the way of college, didn't they?! :lol:

:lol::lol: I start Monday :huh:

HI MORGAN!!!!!

Hi :)

CarlaB Enthusiast
Did you get some new "date" jeans to wear there? You didn't tell me yesterday that you were going to see the Commodores <_<

Yea, got a new pair of "skinny jeans", you know the new ones that have straight legs ... if you're going to be too skinny, you may as well wear skinny jeans! I got them at Abercrombie.

I thought you knew we were going.

morganb Newbie
Yea, got a new pair of "skinny jeans", you know the new ones that have straight legs ... if you're going to be too skinny, you may as well wear skinny jeans! I got them at Abercrombie.

I thought you knew we were going.

I didn't know it was THIS weekend!!!! I'm glad you had fun :D ....don't worry I didn't go get drunk last night :D

CarlaB Enthusiast
I didn't know it was THIS weekend!!!! I'm glad you had fun :D ....don't worry I didn't go get drunk last night :D

What did you do last night? I didn't expect you to go get drunk!! Don't worry, beer probably wouldn't agree with you, and you'd have trouble finding anything else on campus!

morganb Newbie
What did you do last night? I didn't expect you to go get drunk!! Don't worry, beer probably wouldn't agree with you, and you'd have trouble finding anything else on campus!

lol No it probably wouldn't I just hung out with some people on my floor....traveled to some of their friends dorms and then walked around. Then we came back and watched TV. It sounds boring, but I had fun. It was more interesting when there than when reading about it.

morganb Newbie

Well Rachelville seems to be vacant today :( but I'm stopping by to say Good Morning everyone :D

CarlaB Enthusiast
Well Rachelville seems to be vacant today :( but I'm stopping by to say Good Morning everyone :D

Yea, where is everyone?

Did you go to St. Paul's or are you going tonight? I think the students generally like the 5:30 or 9PM masses.

Rikki Tikki Explorer

Leah:

How are you today? Did you get to see your friend? I know you are going throught a hard time and please, if I can be of any help let me know.

Just edited as after re-reading it I thought it sounded wrong, rude all of the above. Anyway, enjoy all the posts

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Prana Organics no longer GFCO-certified

    2. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    3. - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    4. - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,927
    • Most Online (within 30 mins)
      7,748

    drw80whz
    Newest Member
    drw80whz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • TheDHhurts
      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.