So Sick And Frustrated

[pghkid33]

Hi there. So I have been extremely frustrated recently with how I have felt, over the past six months. I have been following the gluten-free diet as strict as I know how, yet have still been experiencing a slew symptoms, ranging from muscle twitching, to dizziness, to nausea. I have been doing my best to work through these symptoms, thinking that I need to make minor changes in my diet (dropping dairy, etc. for instance). This idea has given me hope along the way that I will feel better. However, I am now beginning to feel hopeless and helpless after a terrible experience. My family is not supportive (they just don't understand, tell me to lie down - my mother just suggested I drink egg nog. great.), so I figured I would seek help on this forum and see if anyone else had experienced something similar. The other day while at work, I felt an urge to go to the bathroom (bowel movement), and my heart started to pound. I got to the point where I felt extremely weak and shaky and eventually ended up having an ambulance called. Apparently, my heart rate / blood pressure were crazy high (I believe 150s for heart rate and top number of 190 for BP). I was given an IV and started to feel better eventually. I ended up doing a bunch of heart tests (they were all negative of course), and was told I had low potassium. I took a potassium pill and was later retested, showing adequate levels. I was sent home tonight, but again feel sick (incredibly nauseated) and weirdly hot. Does anyone have any idea what might be causing all of this? Doctor didn't seem to have any answers, and if it was only potassium, I shouldn't be feeling this way as my level is now fine.

[pghkid33]

 

Update: Ended up in hospital again today due to extreme shakiness / weakness after a bowel movement. Potassium low again, despite taking a pill yesterday and having it tested at a normal level... put on beta blockers now b/c of heart rate / high bp both times I went in. Also, Xanax and Potassium supplements

[cyclinglady]

Sorry to hear that you are so ill.  Unfortunately, I have not experienced comparable symptoms.  Usually, my blood pressure drops very low after what I now know due a non-functioning gallbladder, along with Celiac Disease.  Perhaps others on the forum may be able to help.  Have you been diagnosed with Celiac Disease or had any of the blood tests/biopsies?  What led you to giving up gluten?

 

Take care and I hope that you find answers!  

[dilettantesteph]

Have you been diagnosed with celiac disease or gluten sensitivity?  What do you mean by following the gluten free diet as strict as you know how?  It is possible that you are missing something.

[pghkid33]

Have you been diagnosed with celiac disease or gluten sensitivity?  What do you mean by following the gluten free diet as strict as you know how?  It is possible that you are missing something.

Yes, sorry I should have explained. Diagnosed with celiac disease in late July 2011. Felt vast improvement on the diet and was doing pretty well until earlier this year. I feel that I've been pretty strict, don't can't even fathom what I might be missing at this point. Cut out dairy for the past few weeks. Have done so much experimenting with my diet, it's making me crazy. This morning I woke up nauseated and weak - don't even feel like I can get anything down when I try to eat - I just feel full. Lots of indigestion.

[cyclinglady]

Another endoscopy?  A HIDA scan to check for a non-functioning gallbladder (indigestion, nausea).  Not sure if you're a girl or not, but checking out your ovaries too (long shot!)

[pghkid33]

Another endoscopy?  A HIDA scan to check for a non-functioning gallbladder (indigestion, nausea).  Not sure if you're a girl or not, but checking out your ovaries too (long shot!)

I believe I am getting a scope of some sort done in the next few days, not sure what exactly. I will request an endoscopy, and perhaps the gallbladder test. I also should mention that my vitamin D levels were found to be "a little low" in the words of my doctor, as well as slightly low creatinine levels. No one seemed too concerned with these findings, however. I am a 22 year old male, so no ovaries to worry about. I guess I'm just a little freaked out that I have high blood pressure, as it seems like a pretty strange thing to have for someone as young as I am.

[dilettantesteph]

I still didn't get enough details to know what to suggest.  Do you eat in restaurants? Do you eat take out food?  Do you eat packaged foods?  Do you share a kitchen with gluten eaters?  What precautions do you take to make sure that your food doesn't get cross contaminated?

[pghkid33]

I still didn't get enough details to know what to suggest.  Do you eat in restaurants? Do you eat take out food?  Do you eat packaged foods?  Do you share a kitchen with gluten eaters?  What precautions do you take to make sure that your food doesn't get cross contaminated?

I eat in restaurants every once in a while, and I thought that may have been a problem, but I had not eaten in a restaurant for a good while before I had these two episodes. I do share a kitchen with my family, and I am very careful about cross contamination - in fact, was probably the most careful I've been since I've been living here in the past week or so (bought my own pan, isolated my own dishes). The night before the first hospital episode I ate a couple of pre-packaged foods - one was a frozen chicken curry dish, also ate gluten-free honey mustard and onion pretzel sticks (snyder's) and some "Mary's Gone Crackers" herb crackers 

[dilettantesteph]

 The night before the first hospital episode I ate a couple of pre-packaged foods - one was a frozen chicken curry dish, also ate gluten-free honey mustard and onion pretzel sticks (snyder's) and some "Mary's Gone Crackers" herb crackers 

 

This is telling.  Some packaged foods are better than others when it comes to cross contamination.  Eating larger amounts of these kinds of packaged foods will make the effect worse.  Some of us become sensitive to lower levels of cross contamination as time goes on.  That definitely happened to my son and me.  You may want to stick with processed foods that are certified gluten free: Open Original Shared Link

You may also want to eat more unpackaged foods like fruits, vegetables, and unprocessed meats.

[pghkid33]

This is telling.  Some packaged foods are better than others when it comes to cross contamination.  Eating larger amounts of these kinds of packaged foods will make the effect worse.  Some of us become sensitive to lower levels of cross contamination as time goes on.  That definitely happened to my son and me.  You may want to stick with processed foods that are certified gluten free: Open Original Shared Link

You may also want to eat more unpackaged foods like fruits, vegetables, and unprocessed meats.

yeah that does seem to be something that people here advocate for. Thank you, I'll take a look at your link and try to follow it. ALSO: Went to doc today, was told Vitamin D level is 26, he said normal was 29. Felt very weak upon leaving docs office, but took 2000 IU of D3 when I got home and felt good within 2 hours... is it possible to see such quick, dramatic results? Especially given that my doc seemed to have no concern with my level... is 26 lower than he thinks?

[notme]

mine was 24 and my doc said it should be more like 75 ?  so, yeah, that's low.  i am on D2 50000 iu per week (1x per wk) plus i take D3 in between and now (after probably a year) it's up to 54.  my doc didn't discontinue the supplement, so he must want it higher

[pghkid33]

mine was 24 and my doc said it should be more like 75 ?  so, yeah, that's low.  i am on D2 50000 iu per week (1x per wk) plus i take D3 in between and now (after probably a year) it's up to 54.  my doc didn't discontinue the supplement, so he must want it higher

really? no way. might explain a lot. I've felt the best I've felt in at least a couple of weeks today after supplementing... small sample size but I am encouraged! can't believe there isn't consensus on this, why would my doc say 29 is okay?

[notme]

really? no way. might explain a lot. I've felt the best I've felt in at least a couple of weeks today after supplementing... small sample size but I am encouraged! can't believe there isn't consensus on this, why would my doc say 29 is okay?

my sister's doctor told her a lesser number, too.  i don't know if there are different tests?   she was at 17 <feeling completely miserable until she started supplementing and having no idea why.  i had no idea vitaminD was so important, but i can feel the difference   maybe ask your doc?

[dilettantesteph]

What your levels should be depend on the units used for the test which are different in the US and Canada.  Also, a lot of tests still use out dated values.  This is the latest information that I know about: Open Original Shared Link

 

This is the press release which gives a summary: Open Original Shared Link

 

" The measurements of sufficiency and deficiency — the cutpoints — that clinical laboratories use to report test results have not been based on rigorous scientific studies and are not standardized."

 

"almost all individuals get sufficient vitamin D when their blood levels are at or above 20 nanograms per milliliter as it is measured in America, or 50 nanomoles per liter as measured in Canada. "

 

"Upper intake levels represent the upper safe boundary and should not be misunderstood as amounts people need or should strive to consume.  The upper intake levels for vitamin D are 2,500 IUs per day for children ages 1 through 3; 3,000 IUs daily for children 4 through 8 years old; and 4,000 IUs daily for all others. "

[notme]

thank you, steph

[pghkid33]

What your levels should be depend on the units used for the test which are different in the US and Canada.  Also, a lot of tests still use out dated values.  This is the latest information that I know about: Open Original Shared Link

 

This is the press release which gives a summary: Open Original Shared Link

 

" The measurements of sufficiency and deficiency — the cutpoints — that clinical laboratories use to report test results have not been based on rigorous scientific studies and are not standardized."

 

"almost all individuals get sufficient vitamin D when their blood levels are at or above 20 nanograms per milliliter as it is measured in America, or 50 nanomoles per liter as measured in Canada. "

 

"Upper intake levels represent the upper safe boundary and should not be misunderstood as amounts people need or should strive to consume.  The upper intake levels for vitamin D are 2,500 IUs per day for children ages 1 through 3; 3,000 IUs daily for children 4 through 8 years old; and 4,000 IUs daily for all others. "

Thank you for the clarification. I suppose my vitamin D can't be that much of a problem then, can it? I am starting to wonder if I may have other food sensitivities... is there any way of testing for casein, soy, corn, etc. sensitivity other than elimination?

[NoGlutenCooties]

I'm in the US and two different doctors have told me my Vit D is ok at 49, but really should be closer to 55 or 60.  This is also consistent with what I've read in various health books.

[GFinDC]

Hi pghkid,

 

You could get some Morton Lite salt at the grocery store to use.  It is 50% potassium 50% salt.  Might help.

 

Avoiding packaged/processed foods for a few months would probably help.  Also avoiding eating in restraunts.

 

Have you checked your vitamins for gluten?  Also any medications you are taking need to be gluten-free.

[pghkid33]

Hi pghkid,

 

You could get some Morton Lite salt at the grocery store to use.  It is 50% potassium 50% salt.  Might help.

 

Avoiding packaged/processed foods for a few months would probably help.  Also avoiding eating in restraunts.

 

Have you checked your vitamins for gluten?  Also any medications you are taking need to be gluten-free.

I have checked the vitamins... I believe the medications they have put me on are gluten free... looked up xanax atenolol and the potassium pills. I am in this cycle now of having 3 or 4 bowel movements in the morning followed by extreme weakness / fatigue, heavy arms... I am supposed to return to work on monday but I have no idea how I'm going to do so if this keeps happening

[GFinDC]

Hi pghkid,

 

If you think it is a problem caused by diet, then the thing to do is fix your diet.  Try eating very simple meals for a while, with no processed food at all.  Your diet is something you completely control, so you can fix it.  You could fry some chicken breasts and eat them with peas, green beans, onion or some other veggies.  Some pro-biotics might help too, and avoiding sugar/carbs.  Remember, the simpler your diet is, the easier it is to troubleshoot.

 

You can try pysillium husks for added fiber.  It might help with the D.

[pghkid33]

Hi pghkid,

 

If you think it is a problem caused by diet, then the thing to do is fix your diet.  Try eating very simple meals for a while, with no processed food at all.  Your diet is something you completely control, so you can fix it.  You could fry some chicken breasts and eat them with peas, green beans, onion or some other veggies.  Some pro-biotics might help too, and avoiding sugar/carbs.  Remember, the simpler your diet is, the easier it is to troubleshoot.

 

You can try pysillium husks for added fiber.  It might help with the D.

Thank you, appreciate the response. I have been taking probiotics for some time, and have been now trying to implement digestive enzymes. I really do believe it is a diet problem, as well as a CC problem living in a shared house with my family. I am going to do my best over the next few days eliminating everything I can to see what happens. I just feel very lost and am not receiving much support, as doctors have told me I'm fine... If I'm "fine" why do I feel like absolute hell to the point where I can't function?

[GFinDC]

Hi pghkid,

 

Most doctors don't have celiac disease, so they don't understand what it feels like.  And many of them are not much help when it comes to advice about diet.  You are right cc can cause plenty of problems.  Our immune systems are very sensitive and react to germs we can't even see with the naked eye.  So a crumb of gluten you can see is plenty enuff to get a reaction going.  If you are cooking your own food, which you should be, then make sure you either have separate pots and pans or wash the shared ones really well before using them.  Even sharing a stick of butter or a jar of peanut butter is enuff to cause problems, or a toaster for that matter.  You can check with the manufacturer of the meds and vitamins to make sure they are gluten-free.  For the D it would help if you don't drink any caffeine, (coffee, tea, soda) as that stimulates the digestive tract.

 

I hope you feel better soon!

[pghkid33]

Hi pghkid,

 

Most doctors don't have celiac disease, so they don't understand what it feels like.  And many of them are not much help when it comes to advice about diet.  You are right cc can cause plenty of problems.  Our immune systems are very sensitive and react to germs we can't even see with the naked eye.  So a crumb of gluten you can see is plenty enuff to get a reaction going.  If you are cooking your own food, which you should be, then make sure you either have separate pots and pans or wash the shared ones really well before using them.  Even sharing a stick of butter or a jar of peanut butter is enuff to cause problems, or a toaster for that matter.  You can check with the manufacturer of the meds and vitamins to make sure they are gluten-free.  For the D it would help if you don't drink any caffeine, (coffee, tea, soda) as that stimulates the digestive tract.

 

I hope you feel better soon!

Thanks man, I sure hope so too. I've completely cut out caffeine at this point. Today I went grain-free, dairy-free, soy-free, going to see if that helps with the morning BMs. Funny you mentioned the butter - made salmon tonight and mother used a used stick of butter. I got pissed and she couldn't understand why haha

[GFinDC]

Yep, I didn't think crumbs in an old gluteny toaster would make me sick at first.  But I found out different!  It really doesn't take much at all.  Some people mark all their gluten-free items with a red x or something so the gluten eaters know not to touch them.  And keep all the gluten-free food on higher shelves so flour dust or what not doesn't fall on it.

 

It takes a while to learn the things that can get you.  It takes time for us, and it takes time for those we love to learn also.

 

I am guessing the frozen food meals you ate might have had something to do with your current symptoms.  If it was Amy's brand that could be the reason.  Some of us have problems with their gluten-free products.  I stopped eating them years ago because of problems.

 

I hope you are keeping a food journal to record things that make you sick.  Also, either or both of your parents gave you the genes for celiac disease.  So they should be tested at some point too.