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Constantly in pain

Squanching

By Squanching
in Coping with Celiac Disease

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Squanching Rookie
Squanching
Posted

Hello, I am rather new to this forum and would like to give you a brief introduction somewhat:

I am 19 years old and I have Celiac Disease, Pots (postural orthostatic tachycardia syndrome) Diagnosed in 2015, Insomnia Diagnosed in 2015, and Osteopenia Diagnosed in January

I was diagnosed with Celiacs in November of last year after struggling with stomach pain and unintentional weight loss for a couple of months (dropped from 170 lbs to 140 lbs). I was of course prescribed the gluten free diet which I have been sticking too very strictly and it has been working out well for me until recently.

Starting about a week ago the tiniest amounts of food I ate felt like it was tearing my stomach apart and made me vomit, I could barely even stomach water; my stomach hurts constantly and makes it impossible for me to get the little bits of sleep that I try to get. I've went back to my doctor (who is great) to discuss it with him because i'm back to losing weight dramatically quick; this week alone I've probably lost 8 lbs with my very sedentary life style. For the most I can stomach maybe a small bowl of cereal but the pain is constant and it's torture. I've had an Upper Endoscopy w/ a biopsy  done on the 8th, Abdomen MRI on the 9th, and a Pelvis MRI to see what's going on and i'm just waiting for the results at this point I'm impatient and just want to know what is going on and maybe get some relief. I haven't slept in 2 days, my pots symptoms are exacerbated, and most of my vomit is blood...I'm just trying to cope.  

I'm so tired 

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ironictruth Proficient
ironictruth
Posted

Hugs. I wish I had advice. 

Can you do nutrition drinks? Are you absolutely positive no gluten is sneaking in through your meds or through a weird ingredient listed in your food? 

Let us know your results. 

More hugs.

Jmg Mentor
Jmg
Posted

Hello and welcome :)

9 hours ago, Squanching said:

I'm impatient and just want to know what is going on and maybe get some relief. I haven't slept in 2 days, my pots symptoms are exacerbated, and most of my vomit is blood...I'm just trying to cope.

Like IT above I wish I had some advice for you. Although it's good to hear you have a sympatetic doctor, do stay in close touch with them, at present you sound like you need to be in regular contact. 

I also have POTS but have found the gluten-free diet has just about resolved it. I do get occasional reminders which I put down to cross contamination. A sign that I've maybe slipped up on the diet. So I'd echo IT's point above about checking and rechecking whether there's a chance gluten has got its way in. Do you use a shared kitchen? Scratched non stick pots and pans? cutting boards? sieves and colanders etc? Try and be as systematic as you can.

May also be worth giving other members here some more detail on your diet at present in case there's any additional intolerance that's only reared its head since you went gluten-free. That can happen, dairy is the most common culprit but there's plenty of other examples on here.Maybe going back to the food journal would also be a good idea. Note what you eat, when and how you feel. 

Best of luck to you. One good thing is you've found this site, there's some good people here with far more knowledge who will do their best to help. Keep on carrying on...

 

 

 

 

 

 

ps... RICK AND MORTY FOREVER AND FOREVER A HUNDRED YEARS!

Related image

Squanching Rookie
Squanching
Posted
  • Author
15 hours ago, ironictruth said:

Hugs. I wish I had advice. 

Can you do nutrition drinks? Are you absolutely positive no gluten is sneaking in through your meds or through a weird ingredient listed in your food? 

Let us know your results. 

More hugs.

I haven't tried any nutrition drinks but i'll give it a go thanks

I'm not entirely sure 

Squanching Rookie
Squanching
Posted
  • Author
13 hours ago, Jmg said:

Hello and welcome :)

Like IT above I wish I had some advice for you. Although it's good to hear you have a sympatetic doctor, do stay in close touch with them, at present you sound like you need to be in regular contact. 

I also have POTS but have found the gluten-free diet has just about resolved it. I do get occasional reminders which I put down to cross contamination. A sign that I've maybe slipped up on the diet. So I'd echo IT's point above about checking and rechecking whether there's a chance gluten has got its way in. Do you use a shared kitchen? Scratched non stick pots and pans? cutting boards? sieves and colanders etc? Try and be as systematic as you can.

May also be worth giving other members here some more detail on your diet at present in case there's any additional intolerance that's only reared its head since you went gluten-free. That can happen, dairy is the most common culprit but there's plenty of other examples on here.Maybe going back to the food journal would also be a good idea. Note what you eat, when and how you feel. 

Best of luck to you. One good thing is you've found this site, there's some good people here with far more knowledge who will do their best to help. Keep on carrying on...

 

 

 

 

 

 

ps... RICK AND MORTY FOREVER AND FOREVER A HUNDRED YEARS!

Related image

A shared kitchen and no one in the house cares so I try my best 

cyclinglady Grand Master
cyclinglady
Posted

Ask your doctor for another celiac antibodies test.  It might be gluten and your antibodies might be flaring up.  I was glutened one summer and my GI thought it might be SIBO but it was a glutening based on my antibodies which were even higher (off the charts) than I was diagnosed (barely positive).  What threw us both off was the severity of my symptoms, duration and the fact that they were completely different from when I was diagnosed (really no GI symptoms, just anemia).   At least you can rule out a glutening and then look for other causes.  

I hope you feel better soon!  

Jmg Mentor
Jmg
Posted
6 hours ago, Squanching said:

 

A shared kitchen and no one in the house cares so I try my best 

 

Ok, it's a little harder but it's not impossible. You need a cupboard of your own, in which to keep your gluten-free stuff, separate chopping board, sieve, pan etc. Just take them out to cook with, clean them and put them back before they can get used by the others. 

You need separate butter, jam etc. So an area in the fridge for your stuff is also a reasonable request. Label it if neccesary. 

Keep the food diary. It's a pain in the arse but it could help you track down any contamination taking place, and see my comments above about sharing your diet here. 

Best of luck!

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cyclinglady Grand Master
cyclinglady
Posted

Just wanted to add that I found that when glutened, I have a hard time digesting anything!  So, my go-to foods are well-cooked mushy meats and veggies (stews or soups).  I even eat cooked fruit.  So much easier to digest when your gut is ravaged during a celiac flare-up.

 

ravenwoodglass Mentor
ravenwoodglass
Posted

You mention being able to just  tolerate a small bowl of cereal.  What cereals are you eating? Do they contain oats? Even gluten free certified ones? There are some celiac folks who don't tolerate oats even if they are certified as gluten free. On the off chance you may be eating them you may want to drop them for a bit and see if that helps.

I hope you get some relief soon.

Squanching Rookie
Squanching
Posted
  • Author
On 3/14/2017 at 5:27 AM, Jmg said:

Ok, it's a little harder but it's not impossible. You need a cupboard of your own, in which to keep your gluten-free stuff, separate chopping board, sieve, pan etc. Just take them out to cook with, clean them and put them back before they can get used by the others. 

You need separate butter, jam etc. So an area in the fridge for your stuff is also a reasonable request. Label it if neccesary. 

Keep the food diary. It's a pain in the arse but it could help you track down any contamination taking place, and see my comments above about sharing your diet here. 

Best of luck!

Today I went out and picked up a bunch of new things, I had bought new pots, pans ,etc etc before but I threw them out just in case and bought stuff

Thank you <3

I started back up my food journal and I really don't eat much twice a day for the most and it'll be small portions of food I've only been having smoothies since I originally posted. My grandmother is from the Caribbean and they make all kinds of anti inflammatory smoothies and it's been helping me a lot. 

Squanching Rookie
Squanching
Posted
  • Author
On 3/14/2017 at 2:02 AM, cyclinglady said:

Ask your doctor for another celiac antibodies test.  It might be gluten and your antibodies might be flaring up.  I was glutened one summer and my GI thought it might be SIBO but it was a glutening based on my antibodies which were even higher (off the charts) than I was diagnosed (barely positive).  What threw us both off was the severity of my symptoms, duration and the fact that they were completely different from when I was diagnosed (really no GI symptoms, just anemia).   At least you can rule out a glutening and then look for other causes.  

I hope you feel better soon!  

I called and asked today and I have an appointment for the 20th 

thank you <3 

Squanching Rookie
Squanching
Posted
  • Author
On 3/14/2017 at 11:02 AM, ravenwoodglass said:

You mention being able to just  tolerate a small bowl of cereal.  What cereals are you eating? Do they contain oats? Even gluten free certified ones? There are some celiac folks who don't tolerate oats even if they are certified as gluten free. On the off chance you may be eating them you may want to drop them for a bit and see if that helps.

I hope you get some relief soon.

I eat Honey Chex  :)

I stopped eating cheerios because i couldn't tolerate them 

GFinDC Veteran
GFinDC
Posted
36 minutes ago, Squanching said:

I eat Honey Chex  :)

I stopped eating cheerios because i couldn't tolerate them 

I can't eat Honey Nut Chex. I can eat the Rice Chex though.  But that is pretty rare that I eat them.

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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