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

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

Green12 Enthusiast
Julie-

I am so glad you found it helpful!!! It is part of a larger article I will try to locate it or find you the link.

I have not been great that is why I have not been posting so much. I just feel overwhelmed I don't know anymore what to cut out or put in- its all so confusing. I am just trying to listen to my body and give it what it asks for. Sometimes I think thats the best thing I can do for myself.

I got some of the test results back I have a high iron count so I have to do further testing for that becaus eit can afffect the liver and the pancreas it could also explain some of my symptoms though not all. I would love it though if it turned out to be something at least it would give me a proactive direction to move in.

again I am glad the info was helpful .

miamia

That would be great mia mia to have the link, post it when you feel up to it :)

So sorry you have not been doing well. I am really hoping that everything will turn around for you soon. Just do the best you can, that's all any of us can do really, and hang in there. I'm sending postitve thoughts your way

:):):):)

Thanks for the post Miamia, very informative.

I find myself thinking about all of you and wondering how you are doing.

I've been trying the Salt/Vitamin treatment that has been used successfully for Lyme Disease. I am taking a 1/4 teaspoon of Real Salt and Vitamin C twice a day in a glass of water and have been doing so for the past twelve days. I will post more about it later.

Hi rinne!! Miss you in Rachelville :(

How fabulous to hear you are feeling so good with this salt/vit. C flush. I would be interested in hearing more about it.


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
christine 25 Newbie
I got some of the test results back I have a high iron count so I have to do further testing for that becaus eit can afffect the liver and the pancreas it could also explain some of my symptoms though not all. I would love it though if it turned out to be something at least it would give me a proactive direction to move in.

again I am glad the info was helpful .

miamia

Hi, Mia

I know the feeling, sometimes when Im reading so much about science I feel burnt out afterwards.

What was the iron test that you took? There are different kinds, ferritin, iron, etc.

Its amazing that your doctors found that, has your iron been tested before?

They may be wanting to do more blood work to look for iron overload and Haemochromatosis, a genetic disorder involving high iron stores in the body.

I hope you get the answers soon. Im sure you will figure more out soon and start to understand your body more. Let me know whats up with your diet too!

I found some info for you on wikipedia,,,

I have no idea if this is relevant to you, or your situation but its interesting to read.

``````````

"The possibility of too much iron

While the body is able to substantially reduce the amount of iron it absorbs across the mucosa, it does not seem to be able to entirely eliminate the actions of the iron transport process. In addition, in situations in which excess iron damages the intestinal lining itself (for instance, when children eat a large quantity of iron tablets produced for adult consumption), even more iron can enter the bloodstream and cause a potentially deadly syndrome of iron intoxication, in which free iron in the circulation causes damage to critical cells in the liver, the heart and other metabolically active organs.

In general terms, iron toxicity results when the amount of circulating iron exceeds the amount of transferrin available to bind it. However, since the body is able to regulate its iron uptake quite vigorously, frank iron toxicity from ingestion is usually the result of extraordinary circumstances like iron tablet overdose[6] rather than variations in diet. Iron toxicity is more commonly the result of more chronic iron overload syndromes associated with genetic diseases, repeated transfusions or other causes."

`````````

Open Original Shared Link

christine 25 Newbie

Hi, Gang

How is everyone?

Im doing ok, now that I can move again!!!

I had a bad bought out arthritis in my neck shoulders, and back, (jaw too :))

for the last 3 days! Owieee!!!!! That killed. Also a new symptom, my right breast, the nipple area is sensitive and hurts to be touched, almost like a tenderness, like its irritated, maybe I have a cystic nipple!

I was like, owe! I broke my nipple. :D

All that aside, I think I have a better way to organize my thoughts, or at least my diagnoses,

I think I have MCS, or Mutipule Chemical Sensitivites, (and food sensitivites)

sensitivites to meds and supplements and just about everything,

brought on by the exposure to the toxic metals, or the substance whatever it was :) I injested several years ago.

Everyone prob knows about this already, but for me its nice to be able to put a lable on it.

you know the feeling? Its not really reassuring because some say there is no cure, but I think with the right diet changes and such im going to start feel better soon. Anyway it said so in my horoscope, so there.

I was reading a girls post about the Lame Advertisement, and I am going to do it. They also test for other things like preserv. colorings, sulfates, chemicals, flouride, chlorine, and like 150 foods.

Im like all excited!!!

Maybe now I will start to understand what is happening, I hope!

Reading about MCS, the experts say " avoidance", avoid the offending chemicals, or foods!!! and then see what happens. From now on Im going to wear a painters mask around so I dont have to breathe in anything but pristine air. :lol:

It will be interesting to see the results of the Lame Advertisement food test, and maybe gluten will come up too this time, and good luck to myself (pat on the back).

here are some interesting articles that are light reading, and that I enjoyed, for all those who are chemically sensitive, you should read them too.

"People diagnosed with MCS suffer widely assorted symptoms blamed on exposure to trace levels of environmental chemicals. In one person, formaldehyde may cause arthritis, in another insomnia, in another sore throat. In one person, insomnia may be caused by phenols, in another by MSG, in another by sulfites. This lack of correltation between symptom and chemical trigger makes research difficult."

Open Original Shared Link

Open Original Shared Link

-a quick fact sheet-

Open Original Shared Link

-this guy is wack! he says that the cycle is due to nitric oxide buildup in the body, low toxin clearance.

great article, makes some scientificness sense.-

Open Original Shared Link

Open Original Shared Link

-links to Nitrates-

ok thats enough....

AndreaB Contributor

Keep us posted on the Lame Advertisement test Christina.

Glad to hear that you are feeling better.

rinne Apprentice

Open Original Shared Link

Check this out, fluoride could be the problem in the water for stomach problems and rashes.

Open Original Shared Link

Check this out.

jerseyangel Proficient

Rinne,

Very interesting info about flouride.

The article talks about elevated Billirubin levels--mine did go up slightly last year--the year I was drinking the filtered water from the fridge. I also have patches of eczema which have cleared or are finally clearing up, as well.

I still use a toothpaste with flouride (I believe it's the only source I get now) and I still occasionaly get small irritations like cancer sores. I plan to switch my toothpaste--I just need to do some research on which one would be best for me.

My Kinesiologist told me that flouride was very bad for me and that I should avoid it--still don't know exactly how that works, but he turned out to be so right about a lot of things.

miamia Rookie
Hi, Mia

I know the feeling, sometimes when Im reading so much about science I feel burnt out afterwards.

What was the iron test that you took? There are different kinds, ferritin, iron, etc.

Its amazing that your doctors found that, has your iron been tested before?

They may be wanting to do more blood work to look for iron overload and Haemochromatosis, a genetic disorder involving high iron stores in the body.

I hope you get the answers soon. Im sure you will figure more out soon and start to understand your body more. Let me know whats up with your diet too!

I found some info for you on wikipedia,,,

I have no idea if this is relevant to you, or your situation but its interesting to read.

``````````

"The possibility of too much iron

While the body is able to substantially reduce the amount of iron it absorbs across the mucosa, it does not seem to be able to entirely eliminate the actions of the iron transport process. In addition, in situations in which excess iron damages the intestinal lining itself (for instance, when children eat a large quantity of iron tablets produced for adult consumption), even more iron can enter the bloodstream and cause a potentially deadly syndrome of iron intoxication, in which free iron in the circulation causes damage to critical cells in the liver, the heart and other metabolically active organs.

In general terms, iron toxicity results when the amount of circulating iron exceeds the amount of transferrin available to bind it. However, since the body is able to regulate its iron uptake quite vigorously, frank iron toxicity from ingestion is usually the result of extraordinary circumstances like iron tablet overdose[6] rather than variations in diet. Iron toxicity is more commonly the result of more chronic iron overload syndromes associated with genetic diseases, repeated transfusions or other causes."

`````````

Open Original Shared Link

Christine-

thank you so much for the information!!

I had a test for ferritin done. I am going monday to get an iron serum test and a iron binding capacity test done. I would love to d=ind something out and try to get to the bottom of some of the things that are going on or I should say going wrong in my body.

In terms of diet I am trying to keep it as simple as possible but at the same time not worrying so much about any individual diet. I know I have candida , leaky gut , malabsorbtion, etc. But I still allow myself certain grains and carbs becasue I know my body needs them. I am not reacting well to most meats. I can't have any raw vegees pretty much so I eat them cooked. Corn seems to be alright with me for now so I havebeen eating corn pasta again. I am so thin at this point and eating leaves me so uncomfortable I figure whatever I can get in my body I have to put into it even if it dosen't fit inot the rules of certain diets I am supposedly supposed to adhere to.

Again thanls so much for the info . how are you doing? How is your diet going?

Miamia


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



Celiac.com Sponsor (A8-M):



dlp252 Apprentice

HI everyone...some really good info from everyone...THANKS.

I've been missing for a couple of days because it's been so crazy busy at work, so no time to read and post. I had a dentist appointment on Wednesday for routine cleaning and since then my whole jaw area has been throbbing with the worst pain...I've been popping Tylenol like crazy and it doesn't even touch the pain, so I'm going back today to see if possibly it's TMJ. This has happened before, but I've never kept good journals so this time before too much time passes I'm going back. If I place my finger on one point at the jaw joint it is painful in that spot, but the throbbing in the rest of the jaw goes away...how weird is that!? Anyway, I couldn't sleep last night because of the pain, and since they could fit me in today, I'm going.

Did very well this week at avoiding sugar of all kinds...just meat and veggies. The itching is much less intense. I'm trying to figure out what to do about tomorrow...I have an all day retreat so will need to take food, but won't have access to fridge or reheating appliances...chicken and a cooler might do, but I'll have to think about it, lol. Don't really want to mess everything up now. Course, if this jaw pain doesn't go away, I might stay home anyway and won't have to think about it at all. :P

AndreaB Contributor

Donna,

I hope you get some answers at the dentist.

That stinks. :(

CarlaB Enthusiast
If I place my finger on one point at the jaw joint it is painful in that spot, but the throbbing in the rest of the jaw goes away...how weird is that!?

There is a pressure point around there that my chiropractor showed me when my TMJ pain was really bad. The other pressure point is to stick your finger all the way to the back of your mouth where the upper and lower jaw meet and massage there. Don't do it in public though, you'll look like a freak. ;)

dlp252 Apprentice

Thanks Andrea!

There is a pressure point around there that my chiropractor showed me when my TMJ pain was really bad. The other pressure point is to stick your finger all the way to the back of your mouth where the upper and lower jaw meet and massage there. Don't do it in public though, you'll look like a freak. ;)

Funny, I just read that on a website, lol. I'll have to excuse myself to the ladies room so I can try it, lol. :lol:

Green12 Enthusiast
HI everyone...some really good info from everyone...THANKS.

I've been missing for a couple of days because it's been so crazy busy at work, so no time to read and post. I had a dentist appointment on Wednesday for routine cleaning and since then my whole jaw area has been throbbing with the worst pain...I've been popping Tylenol like crazy and it doesn't even touch the pain, so I'm going back today to see if possibly it's TMJ. This has happened before, but I've never kept good journals so this time before too much time passes I'm going back. If I place my finger on one point at the jaw joint it is painful in that spot, but the throbbing in the rest of the jaw goes away...how weird is that!? Anyway, I couldn't sleep last night because of the pain, and since they could fit me in today, I'm going.

Did very well this week at avoiding sugar of all kinds...just meat and veggies. The itching is much less intense. I'm trying to figure out what to do about tomorrow...I have an all day retreat so will need to take food, but won't have access to fridge or reheating appliances...chicken and a cooler might do, but I'll have to think about it, lol. Don't really want to mess everything up now. Course, if this jaw pain doesn't go away, I might stay home anyway and won't have to think about it at all. :P

Donna!

I was just about to post that we needed to send the dingos out for you :lol::lol:

I'm so sorry about your jaw pain, hope you find some answers at your appointment today. Keep us posted.

That's great that you are doing so well with your diet, and a bonus that your itching has been reduced :)

Can you take chicken salad, and raw veggies (like cauliflower florets, baby carrots, bell pepper strips, etc.) in a cooler??

Good luck getting it figured out, and I hope the pain improves in the meantime :)

Christine, I hope you find the answers too :)

Hi rinne! How is everything with you?

Hi Patti! Kinesiology interests me too, all of my experiences with it have been right on too, amazing.

Don't do it in public though, you'll look like a freak. ;)

:lol: Carla

mia mia, hope you are doing well :)

tiffjake Enthusiast
I was reading a girls post about the Lame Advertisement, and I am going to do it. They also test for other things like preserv. colorings, sulfates, chemicals, flouride, chlorine, and like 150 foods.

Im like all excited!!!

It will be interesting to see the results of the Lame Advertisement food test, and maybe gluten will come up too this time, and good luck to myself (pat on the back).

I am going to have the Lame Advertisement test done again, since it is just about a year since the last one, and I am really interested to see if there are changes since going gluten-free. I bet that being gluten-free means I have fewer other intolerances on the test than I did before....but we will see.....

And did I miss something? (I thought I was reading everything....) What is the Lame Advertisement food test?

EDIT!!! I JUST NOTICED THAT MY WORD, A-L-C-A-T WAS CHANGED TO "LAME ADVERTISEMENT"!!!!! THAT REALLY TICKS ME OFF! I AM NOT ADVERTISING ANYTHING!!!! GRRRR! MY WORDS ARE NOT LINKS TO SITES AND THIS IS REALLY WRONG!!!!

penguin Community Regular
I am going to have the Lame Advertisement test done again, since it is just about a year since the last one, and I am really interested to see if there are changes since going gluten-free. I bet that being gluten-free means I have fewer other intolerances on the test than I did before....but we will see.....

And did I miss something? (I thought I was reading everything....) What is the Lame Advertisement food test?

The board won't allow Lame Advertisement to be posted anymore. I wonder if it's the same for enterolab? (obviously not)

tiffjake Enthusiast
I had a dentist appointment on Wednesday for routine cleaning and since then my whole jaw area has been throbbing with the worst pain...I've been popping Tylenol like crazy and it doesn't even touch the pain, so I'm going back today to see if possibly it's TMJ. This has happened before, but I've never kept good journals so this time before too much time passes I'm going back. If I place my finger on one point at the jaw joint it is painful in that spot, but the throbbing in the rest of the jaw goes away...how weird is that!? Anyway, I couldn't sleep last night because of the pain, and since they could fit me in today, I'm going.

Hey Donna, just wanted to share. I have always had a problem with grinding (so they say) cause my teeth are really short and are not normal for a 23 year old (look like a 60 year old's, they tell me, cause they are worn down). I would have SOME jaw problems, but not enough to question TMJ.

I got a cracked tooth a couple of months ago and went to the dentist 2 weeks ago to have a crown put on it to protect the tooth and hold it together. I was in the most terrible pain after sitting in the dentist chair for 2 and 1/2 hours! I was on vicodin and valium for the last 2 weeks. I also used a warm water bottle on my jaw joint to try to relax the muscles.

When I went in on Tuesday (a week after the appointment, so after one week of pain) I had the TENS thing done. It was so annoying. I hated it. But, my jaw did feel better. Just dont tell that dentist, cause I never want to do that again! I hated that thing!

Anyway, she showed me this new mouth piece for people with TMJ that clips on to the front teeth instead of a barrier between all teeth like a night guard. It is small, and looks like a little clippie. The idea is that when the front teeth don't touch, then the back teeth CAN'T! And with most night guards, you train your jaw to "bite down" cause it wants to find the point where the teeth meet.

But they say, with this little thing, your jaw is held just enough open that the muscles relax, and you don't try to bite through the night! I will try to post this link to the info

Open Original Shared Link

Just wanted to pass that along (ps-I MIGHT get one, they are about 350.00, so we will see......)

The board won't allow Lame Advertisement to be posted anymore. I wonder if it's the same for enterolab? (obviously not)

WAIT!!!! I just noticed that my Lame Advertisement word was changed to "lame advert." !!!!!!!! Why?????????

christine 25 Newbie

Penquin,

Pic looks great

Are you on a beach, Im so jealous.

```````````

Lame advertisment test

Lame Advertisement

check check..

I am going to have the Lame Advertisement test done again, since it is just about a year since the last one, and I am really interested to see if there are changes since going gluten-free. I bet that being gluten-free means I have fewer other intolerances on the test than I did before....but we will see.....

I have TMJ and it blows.

Do you think the Lame-ass test will help with that?

tiffjake Enthusiast
Penquin,

Pic looks great

Are you on a beach, Im so jealous.

```````````

Lame advertisment test

Lame Advertisement

check check..

I have TMJ and it blows.

Do you think the Lame-ass test will help with that?

Did you type that? Or was that another board change? Man, this is really annoying. I can't tell if you are being sarcastic about the test, or if you are trying to ask a question about it but when you type the word it is changed.....anyway, I don't think the test will help with that....but who knows. Maybe when you eliminate food intolerances, your muscles will relax (I know I had anxiety problems before.....). Just a thought.

(Maybe I will call it the Kitty-cat test :ph34r: , and if people want to know what I am talking about, then they can PM :lol: )

miamia Rookie
Did you type that? Or was that another board change? Man, this is really annoying. I can't tell if you are being sarcastic about the test, or if you are trying to ask a question about it but when you type the word it is changed.....anyway, I don't think the test will help with that....but who knows. Maybe when you eliminate food intolerances, your muscles will relax (I know I had anxiety problems before.....). Just a thought.

(Maybe I will call it the Kitty-cat test :ph34r: , and if people want to know what I am talking about, then they can PM :lol: )

I have never had the Lame Advertisement test done I went through a different one the 2 times I was tested. Has anyone used them before? 2 questions are they really pricey? did you find their results helpful?

Miamia

I have never had the Lame Advertisement test done I went through a different one the 2 times I was tested. Has anyone used them before? 2 questions are they really pricey? did you find their results helpful?

Miamia

that is annoying the alkat test- does that work

CarlaB Enthusiast

For those with TMJ, I had it very bad. I am seeing an orthodontist for it and medical, not dental, insurance covers it!!! I wore a splint to move my jaw to the right place, now I'm wearing a functional regulator to train my muscles to move correctly and to widen my palate for the braces, which come in November. It's been a long time to get this fixed, but my jaw felt better a couple months into the treatment. It used to click every single time I moved it, and I was in constant dull pain. Now, no clicking and it's rare to have pain (I have permanent damage to my bone so I will always have some trouble). I highly recommend treatment! I put it off for years and just wore a night guard for grinding.

VydorScope Proficient

Test: Lame Advertisement

Test: Lame Advertisement

OKay so Lame Advertisement is forbiden, if you take out the spaces.

dlp252 Apprentice

Julie - Hi!! No, no need to send the dingos, lol.

Hey Donna, just wanted to share. I have always had a problem with grinding (so they say) cause my teeth are really short and are not normal for a 23 year old (look like a 60 year old's, they tell me, cause they are worn down). I would have SOME jaw problems, but not enough to question TMJ.

I got a cracked tooth a couple of months ago and went to the dentist 2 weeks ago to have a crown put on it to protect the tooth and hold it together. I was in the most terrible pain after sitting in the dentist chair for 2 and 1/2 hours! I was on vicodin and valium for the last 2 weeks. I also used a warm water bottle on my jaw joint to try to relax the muscles.

When I went in on Tuesday (a week after the appointment, so after one week of pain) I had the TENS thing done. It was so annoying. I hated it. But, my jaw did feel better. Just dont tell that dentist, cause I never want to do that again! I hated that thing!

Anyway, she showed me this new mouth piece for people with TMJ that clips on to the front teeth instead of a barrier between all teeth like a night guard. It is small, and looks like a little clippie. The idea is that when the front teeth don't touch, then the back teeth CAN'T! And with most night guards, you train your jaw to "bite down" cause it wants to find the point where the teeth meet.

But they say, with this little thing, your jaw is held just enough open that the muscles relax, and you don't try to bite through the night! I will try to post this link to the info

Open Original Shared Link

Just wanted to pass that along (ps-I MIGHT get one, they are about 350.00, so we will see......)

WAIT!!!! I just noticed that my Lame Advertisement word was changed to "lame advert." !!!!!!!! Why?????????

Thanks for the info!! I've bookmarked it and will look at it later.

dlp252 Apprentice
For those with TMJ, I had it very bad. I am seeing an orthodontist for it and medical, not dental, insurance covers it!!! I wore a splint to move my jaw to the right place, now I'm wearing a functional regulator to train my muscles to move correctly and to widen my palate for the braces, which come in November. It's been a long time to get this fixed, but my jaw felt better a couple months into the treatment. It used to click every single time I moved it, and I was in constant dull pain. Now, no clicking and it's rare to have pain (I have permanent damage to my bone so I will always have some trouble). I highly recommend treatment! I put it off for years and just wore a night guard for grinding.

Wow, hope MY insurance covers it, lol.

I saw my regular dentist yesterday...he said my symtoms do seem typical of TMJ...I also have a cracked tooth (which I've had for a while so that's not the cause of this pain and I don't eat on that side anyway)...there is also a spot between two teeth, way down in the gum which is very painful...he doesn't know what that is...usually gum disease is by the teeth, not so far down and thinks it needs to be checked out.

He said I could get a guard for sleeping...so will probably end up getting one...might as well check out the one Tiffany mentioned!

He is also referring me to a specialist who can determine exactly what's going on. I saw this specialist 10 years ago for a route(SP??) canal...it's that tooth area that seems to be one involved with the pain deept in the gums between the teeth. I think the specialist is also the one who will determine if it's TMJ. I DO have the clicking when I open my mouth and I've had this pain before although not as bad.

I took so much Tylenol yesterday which did NOTHING for the pain, so the dentist gave me a prescription for vicodin. The first pill did NOTHING. The second pill dulled the pain enough (or at least made me drowsy enough) to sleep. This morning as soon as I got up I took 3 advil (the girl at the specialist's office said I should take Advil during the day because of the anti-inflamatory thing and so it won't make me drowsy). The pain is still there today, but with all the pain meds, it's thankfully just a dull ache with ocassional spikes of bad pain. I actually put ice on it for a while...picture the gags in TV shows when someone has a toothache and they have a huge bandage wrapped from under the chin and tied on top of the head...that was me so I could ice it and keep my hands free. :lol: Looked stupid, but seemed to help a little. At least I got some sleep.

CarlaB Enthusiast

Were you referred to a specialist for the tooth problem or the jaw problem. Usually it's orthos who do the TMJ repair. There are many methods of working with TMJ, I would not opt for surgery. Just seems strange that he's not sending you to an ortho for the TMJ ... they are the ones who look at cranio- facial structure.

Mouth guards at night can help. The cracked tooth could be from grinding. My jaw was just in the completely wrong place, so for the past year we've been retraining my muscles to hold it in the right place. The last step is moving my teeth so that they don't pull it back to the wrong place. Right now, none of my teeth, except for the front ones, even make contact ... I've learned to just swallow my food whole ... <_< No lettuce for me!

jerseyangel Proficient

Hi Donna--

Sorry about the pain :(

I have TMJ Disfunction, also. I use a night guard on my bottom teeth. Mine was made for me by my dentist. He took a mould of my teeth, and had it made from that. It's very comfortable, and fits perfectly.

Our insurance covered 80% of the cost.

I was diagnosed by an Ear, Nose and Throat Dr. who told me to have the dentist make the guard.

Other things that help ease the pain for me--soft foods (when it hurts), massaging the points (one is where you top and bottom jaws come together--put your finger there and bite down a couple times--you'll feel the place going in and out--the other is farther up, in front of your ear, you'll feel it when you bite), warm cloth on the joints.

CarlaB Enthusiast

When I'm done with the braces, I'll get one of those things you have Patti. I guess it all depends on how bad the problem is what route they take ... or else, who you are referred to and the methods they usually use!

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.