Sick, Shocked And Scared

[biancad]

Over the last 28 days, I been in the ER 4x and hospitalized once. It all started with what I thought was a heart attack and me being whizzed away from my home and six year old in an ambulance. When released from the hospital the last time, I was told they suspect Celiac disease but weren't sure what's wrong with me. They suggested I go gluten free and that if I felt better, then I'd know what it was. Since being home, I received the blood tests which were all negative but with liver numbers five times what they should be. I'm awaiting the results of Celiac genetic testing (I have five family members on my mother's side that have Celiac disease). I am also seeing a liver and GI specialist next week. No one knows what is going on, least of all me.

 

This has been an absolute shock since I've never been ill before and have not been able to work since the "attack" early this month. Also, after going gluten free 12 days ago, I took a Tylenol Extra Strength for a mild headache and joint discomfort which instigated a new round of "heart attack" symptoms and subsided the next morning but left me with what feels like a spike through the left side of my head. Do any of you share a similar story or have similar symptoms? I'm thinking I want to forgo the endocopy and liver biopsy to see if the gluten-free diet helps and causes my liver numbers to drop. Have any of you had success with this? Any thoughts or advice would be greatly appreciated. I've outline my "symptomology" below.

 

Warmly,

 

Sick, Shocked and Scared

 

One year prior to November 1^st “Attack”:

Loss of menstrual cycle

Hair loss & shaking hands

Frequent bruising

Memory Loss

Crashing fatigue after school (three months prior)

Frequent stomachaches after eating (or some radical bouts of food poisoning) & gas

Irregular stools: constipation to diarrhea, blond to dark in color.

Excessive coughs, colds and flus

 

November 1^st “False Heart Attack”:

Started with a mild concentrated chest pain and a feeling of unwellness.

Increased temp, a numbness down left arm, shortness of breath, irregular & increased heart beat.

 

After November 1^st :

Intermittent chest pain and shortness of breath (only three large “attacks” - # ER visits)

Numbness in left arm and both hands (nearly unusable left arm on Sunday ER#2)

Numbness of varying levels in feet

Loss of large motor skills

Loss of fine motor skills

Very slow movement

Slow thought & mental confusion

Memory loss

            Ex: At 4^th emergency room intake, I heard the clerk state that my mother would have to have me sign the intake form. After she was seated next to me, I asked her when I would sign the form. She then told me that I already had signed it. It came as a total shock to me.

            Ex: I had difficulty remembering my address right after the attack. I would search my mind but couldn’t remember it or misstate it.

Frequent Urination

Nausea and dry heaving (primarily the first four days after Nov. 1st

In ability to walk (primarily the first week after Nov. 1st)

General malaise & excessive sleeping (12 to 14 hours)

Involuntary full body spasms, leg reflex spasms while awake, involuntary jaw clenching

Seeing and feeling like I’m moving (when not) increased when eyes are closed

Some Kidney discomfort

A feeling of being perpetually hung over

No sleep (or sleep cues) for a few days after Nov. 1^st then excessive sleeping

No hunger cues (can eat some but not much)

I was unable to eat for several days after Nov. 1^{st (stared feeling better)}

 

Oddities I previously forgot to mention:

Water tasted metallic or poisonous the first few days after Nov. 1^st

Urine smelled like feces the first few days after Nov. 1^st.

When the chest pain and shortness of breath are present, the numbness seems less

I have clarity of thought and some energy for gross motor but then “crash” afterward.

[powerofpositivethinking]

i'm so sorry all of this has been happening

 

here are some of my thoughts:

 

1) Did you already start eating gluten free?  Unless you are absolutely positive you do not want the endoscopy with biopsy, you've got to keep eating gluten until all testing is complete!  I would really suggest eating gluten again in prep for your GI appointment.

 

2)  With 5 members of you family already having celiac, I'd definitely be very suspicious of it regardless of what the blood tests say.  Did you get a hard copy of your results?  Here are the tests for a complete celiac panel, so make sure they ran all of these:

 

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing

check out page 12 in this report for testing information:

Open Original Shared Link

 

3)  Since you were in the hospital do you know what other blood test were run?  Low iron and/or Vit K deficiency can cause frequent bruising.  Those involuntary muscle spasms can be caused by low magnesium, and low magnesium won't necessary show up in a blood test because only 1% of the body's magnesium level is found in the blood.  Open Original Shared Link   I used to have involuntary body twitches, and the strangest one was I would watch my toes move without moving them myself   They went away when I went gluten free, but about a month ago when I tried to reintroduce pure dairy products my foot was twitching, eye was twitching and it became difficult to go to the bathroom again.  My magnesium level was normal when I had it tested pre-gluten free even though I had twitching, but after this last round and researching, I didn't realize such a small percentage of magnesium is found in the blood, and even if that is normal, if you are experiencing magnesium deficiency symptoms, try taking a supplement.  I've been on it for a week, and the twitching is gone and going to the bathroom is getting easier.  I wouldn't suggest supplementing anything until after your GI appointment, and all testing is complete.  Here is a list of suggested nutrients to get tested:

 

Vitamin/Minerals:

Complete Blood Count (CBC)

Complete Metabolic Profile (CMP)

Vitamin B-12

Folic Acid

Vitamin A, D, E, K

Ferritin

Iron

Magnesium

Zinc

Copper

Niacin

Riboflavin

C-Reactive Protein

Good info from University of Chicago Celiac Center:

Open Original Shared Link

 

4) Since you've had hair loss and that can be a symptom of thyroid problems, here are the thyroid tests I would suggest.  nvsmom is really good with the ranges that are ideal:

 

Thyroid Tests:

TSH

Free T3

Free T4

TPO Antibodies

 

 

What was your ob/gyn's reasoning that you do not have your period?  Without getting your period, that can mess with your bone density. 

 

The following happened before I was gluten-free:  I've taken the birth control pill twice in my life, and the first time I went off it, my period came back naturally and quickly.  The second time I was on it longer.  I was taking Yaz which was going great, got switched to the generic because of my insurance, and that's when mentally I started feeling strange and problems started cropping up, so I switched back to Yaz.  When that didn't correct everything, I stopped it.  Normally you are suppose to get your period three months after stopping the pill, but after five months without a period, I called up my ob/gyn got prescribed Provera which jumped started everything, and now it is regular again.  Even though that time of the month is a pain, you need your period to keep your bone mass in check. 

 

 

I hope this helps!

 

 

 

 

Over the last 28 days, I been in the ER 4x and hospitalized once. It all started with what I thought was a heart attack and me being whizzed away from my home and six year old in an ambulance. When released from the hospital the last time, I was told they suspect Celiac disease but weren't sure what's wrong with me. They suggested I go gluten free and that if I felt better, then I'd know what it was. Since being home, I received the blood tests which were all negative but with liver numbers five times what they should be. I'm awaiting the results of Celiac genetic testing (I have five family members on my mother's side that have Celiac disease). I am also seeing a liver and GI specialist next week. No one knows what is going on, least of all me.

 

This has been an absolute shock since I've never been ill before and have not been able to work since the "attack" early this month. Also, after going gluten free 12 days ago, I took a Tylenol Extra Strength for a mild headache and joint discomfort which instigated a new round of "heart attack" symptoms and subsided the next morning but left me with what feels like a spike through the left side of my head. Do any of you share a similar story or have similar symptoms? I'm thinking I want to forgo the endocopy and liver biopsy to see if the gluten-free diet helps and causes my liver numbers to drop. Have any of you had success with this? Any thoughts or advice would be greatly appreciated. I've outline my "symptomology" below.

 

Warmly,

 

Sick, Shocked and Scared

 

One year prior to November 1^st “Attack”:

Loss of menstrual cycle

Hair loss & shaking hands

Frequent bruising

Memory Loss

Crashing fatigue after school (three months prior)

Frequent stomachaches after eating (or some radical bouts of food poisoning) & gas

Irregular stools: constipation to diarrhea, blond to dark in color.

Excessive coughs, colds and flus

 

November 1^st “False Heart Attack”:

Started with a mild concentrated chest pain and a feeling of unwellness.

Increased temp, a numbness down left arm, shortness of breath, irregular & increased heart beat.

 

After November 1^st :

Intermittent chest pain and shortness of breath (only three large “attacks” - # ER visits)

Numbness in left arm and both hands (nearly unusable left arm on Sunday ER#2)

Numbness of varying levels in feet

Loss of large motor skills

Loss of fine motor skills

Very slow movement

Slow thought & mental confusion

Memory loss

            Ex: At 4^th emergency room intake, I heard the clerk state that my mother would have to have me sign the intake form. After she was seated next to me, I asked her when I would sign the form. She then told me that I already had signed it. It came as a total shock to me.

            Ex: I had difficulty remembering my address right after the attack. I would search my mind but couldn’t remember it or misstate it.

Frequent Urination

Nausea and dry heaving (primarily the first four days after Nov. 1st

In ability to walk (primarily the first week after Nov. 1st)

General malaise & excessive sleeping (12 to 14 hours)

Involuntary full body spasms, leg reflex spasms while awake, involuntary jaw clenching

Seeing and feeling like I’m moving (when not) increased when eyes are closed

Some Kidney discomfort

A feeling of being perpetually hung over

No sleep (or sleep cues) for a few days after Nov. 1^st then excessive sleeping

No hunger cues (can eat some but not much)

I was unable to eat for several days after Nov. 1^{st (stared feeling better)}

 

Oddities I previously forgot to mention:

Water tasted metallic or poisonous the first few days after Nov. 1^st

Urine smelled like feces the first few days after Nov. 1^st.

When the chest pain and shortness of breath are present, the numbness seems less

I have clarity of thought and some energy for gross motor but then “crash” afterward.

[1desperateladysaved]

I had the shakes every day of my life (I thought I was nervous)  until my chiropractor had me take a quality liquid magnesium supplement.  After 3 or 4 days on that, my shakes went away.    I hope your nutrient levels were checked or will be.  Magnesium is needed by the heart according to my Prescription for Nutritional Healing book.  I had heart problems that nutritional supplements helped me tread water.  I had a surprise as I had no family history, so we didn't suspect celiac right away.  I second getting the nutrient levels testing.  Celiac can cause nutrient deficiencies.

 

I am currently about 18 months gluten free and I feel well.  I hope you will tell a similar story soon.

 

D

[biancad]

Thank you both for your replies. I will look at my blood tests today. I just spent yet another night completely awake, terrified to sleep with the shortness of breath that I'm having. It scares the heck out of me. 

I can't go back on a gluten diet. I'm certain it will kill me. I will go with the genetic test results and try to figure out why I'm still having attacks believing that I'm on a gluten-free diet. Can the glutening last 3 or 4 days?

 

I do know that I'm sub-clinical hypo-thyroid and my liver panel is five times the normal level. The not knowing is getting to me as much as the symptoms. I don't know how long I can go on like this. It's so disheartening and scary.

 

I will look into the magnesium today and some gluten-free probiotics. I'm hopeful I can get a referral to the Celiac center without a biopsy. Fingers crossed. Thank you again for your replies and support. I'm freaking out alone while everyone else sleeps the night away. :'-(

[Snoopy1229]

Sick, shocked, and scared.

 

I'm so sorry to hear about your troubles. Hang in there. Before I offer any advice I have to disclose that I'm new to this forum. Most of my medical knowledge is in neurology. 

 

Have you considered the possibility that other foods besides gluten could be causing your problems? Many people with Gluten intolerance also have problems digesting casein (found in dairy products). 

 

My main symptom's are neurological (tics and whatnot). Its clear that something in my body is stimulating excess electrical activity in my brain, could something similar be happening to your heart? I know that Adrenaline, Cortisol, and Norepinephrine regulate the heart. Could your diet be stimulating overproduction of these hormones? I have an abundance of Norepinephrine which causes my involuntary movements and I've also had moments where my heart beats strangely and I can't breathe and see stars. Lasts anywhere from a few seconds to 45 seconds. 

 

I hope this is helpful to you in some way. Don't be scared. I've found it remarkable how resilient the human body can actually be after all the stuff that mine's been through. The best thing that you can do is remain calm and trust yourself and your gut instincts. Be your own advocate and remain educated on whatever you can with regard to your medical care. You're doing all the right things. I hope you find some answers soon. 

[powerofpositivethinking]

if you look around on this site, you'll see that when some get glutened it will last a day where with others the lingering effects can last weeks, so 3-4 days is definitely in the range of normal.

 

 

Thank you both for your replies. I will look at my blood tests today. I just spent yet another night completely awake, terrified to sleep with the shortness of breath that I'm having. It scares the heck out of me. 

I can't go back on a gluten diet. I'm certain it will kill me. I will go with the genetic test results and try to figure out why I'm still having attacks believing that I'm on a gluten-free diet. Can the glutening last 3 or 4 days?

 

I do know that I'm sub-clinical hypo-thyroid and my liver panel is five times the normal level. The not knowing is getting to me as much as the symptoms. I don't know how long I can go on like this. It's so disheartening and scary.

 

I will look into the magnesium today and some gluten-free probiotics. I'm hopeful I can get a referral to the Celiac center without a biopsy. Fingers crossed. Thank you again for your replies and support. I'm freaking out alone while everyone else sleeps the night away. :'-(

[biancad]

Thank you both for the replies. I'm touched that you would take the time out of your Thanksgiving holiday to show your support. I have considered that the source is something other than gluten foods. I'm now on a meat, avocado and potatoes in jackets diet down from the mixed veggies, meats, and avocados. I'm drinking Aloe vera juice and mixed greens in between small meals. I'm also drinking herbal or green tea with Stevia. I've quit the green tea to get rid of the headache after staying up for two nights. I've recently replaced my hand soap, shampoo, cutting boards, and wooden utensils. I don't wear cosmetics but have lip gloss with soy bean oil. Should I discontinue that? I've also been receiving castor oil packs for my abdomen - I don't notice any results there but don't really care for those packs. Any other thoughts and suggestions while I wait in purgatory? I'm hoping for genetic results and a new liver panel on Monday or Tuesday. I'm striving to enjoy endless hours of historical drama.

 

Thank you again for your kindness!

[biancad]

My main symptom's are neurological (tics and whatnot). Its clear that something in my body is stimulating excess electrical activity in my brain, could something similar be happening to your heart? I know that Adrenaline, Cortisol, and Norepinephrine regulate the heart. Could your diet be stimulating overproduction of these hormones? I have an abundance of Norepinephrine which causes my involuntary movements and I've also had moments where my heart beats strangely and I can't breathe and see stars. Lasts anywhere from a few seconds to 45 seconds. 

 

Cortisol taken over four days: 

 

Cortisol 9.1 9.5 9.9 30.2

 

(not 100% sure about the last result - it has the same collection date/time than the 3rd one - maybe this is after they administered a Cortisol shot to test my response to it - the first time they tried to give me this test I thought it was going to kill me! My chest got hot and tight so I asked them to stop)

[NoGlutenCooties]

Just wanted to add that depending on how long you've been gluten-free, it may not be too late for a biopsy.  It depends on how long it would take to get an appointment.  When I got my bloodwork results I immediately went gluten-free... just couldn't see putting more poison in my body.  It only took 3 weeks for me to get an appt. for an endoscopy and my biopsy showed moderate to severe damage.  When I told my GI doctor that I had already gone gluten-free she told me that it's not best to do that, but as long as I didn't wait a couple of months to get the biopsy then it should be fine.  The inflammation and damage do not go away right away.

[w8in4dave]

I just wanted to add the blond stool is probably from your liver enzymes being up. My liver enzymes were up and I looked it up and one of the symptoms is light colored stools. I also read eating pork and beef is good for it. I cannot say where I read it so you may want to look it up. Hope you get well soon. 

[greenbeanie]

I'm so sorry you're going through this, and I hope things improve soon! On an optimistic note, I had a similar experience a few years ago (but without such elevated liver enzymes) and have improved hugely since going gluten free. I'd originally had almost constant rashes since I was six  years old, a very irregular menstrual cycle ever since I was a teenager (sometimes with months between cycles), and diarrhea and stomach pain after eating since I was about 16 (I'm 38 now). About thirteen years ago I got a constant tingling and intermittent numbness in one leg, joint pain, fatigue, and frequent night sweats. About eight years ago the leg tingling got worse and sometimes my whole body felt shaky, and my coordination and balance started to worsen. I went to many doctors dozens of times about all of these things, and no one found a cause. Then, three years ago, everything suddenly worsened drastically. My legs gave out at work and for hours I couldn't regain my balance enough to stand up. I couldn't remember the days of the week and forgot common words. It was terrifying. I eventually managed to get home and went to the ER, where they were initially concerned that I was having a heart attack or stroke (even though I didn't think that was the problem - but I had no idea what was going on). The ER ran a bunch of tests and released me to follow up with my primary care doctor, who said my mineral levels were just a bit off and it was nothing to worry about. She thought the memory loss and balance problems were stress and prescribed anxiety medication, which didn't help at all. A week later my muscles gave out again and I dropped my infant daughter - fortunately, someone caught her and she wasn't injured. I fell down the stairs and banged my head more times than I could count, because my balance was so bad. A nurse finally told me to go to a larger hospital where there was a neurologist on staff, and during the memory test in the second ER I couldn't even remember who was president. They admitted me and ran several MRIs, but again found nothing wrong except for a positive ANA and some not-alarmingly-abnormal vitamin levels. They sent me home with  no diagnosis two days later, having at least ruled out MS. The whole thing was the most terrifying experience of my life - I thought I was dying, and I couldn't even hold my baby or stand up straight for weeks. I was not tested for celiac, and none of us even considered whether there could be a dietary cause for all this.

 

The GOOD news is that I finally figured out on my own that a medication (Ambien) had caused the sudden worsening of symptoms. They kept giving it to me in the hospital, which made the original, long-standing problems much, much worse. I stopped taking it and with a week I was able to walk normally again. The balance and coordination problems improved enough that I went back to work. But I still felt pretty awful. Then, last spring, I finally figured out that gluten could be the problem. My daughter was diagnosed with celiac, and her symptoms were very similar to mine. My own blood tests and biopsy were negative. However, I went strictly gluten free anyhow, and I feel great! Seriously, I feel better than I have since I was a little kid! Rashes, stomach pains, diarrhea, and menstrual problems went away within a few months. The balance and coordination problems have taken longer, and I still don't feel normal, but I no longer fall down stairs and walk into door frames all the time. My memory is not great, but I rarely forget common words anymore. I'm confident that things will keep getting even better. If anyone had asked me when I was in the hospital a few years ago, I would have said I thought I'd either be dead or confined to a wheelchair by now. None of the doctors had any clue what was wrong with me. It was so incredibly scary. I though I had early Alzheimer's or Parkinson's or something. But it turned out just fine! Oh, and my previously-positive ANA had actually become negative at my last blood test!

 

I know this is just one anecdote (sorry for the length!), but healing from these problems definitely is possible if gluten is the cause. And I apparently don't even have celiac, so I'm very glad that I ignored the negative tests results (and ignored my previous doctors' skepticism) and made our whole house gluten free anyway. I really hope you see steady improvements from here on out. Please keep us posted.

[nora-n]

the chest thing could be costocondritis (a typical symptom of hypothyroidism, and hypothyroid is connected to gluten since gluten trigger thyroid antibodies)

I had that

[pricklypear1971]

I'm sorry this is happening. When you say sub clinical hypo...are you being treated with thyroid meds t3/t4 ? Many, many symptoms if thyroid disease overlap with Celiac. And, if they are only using your TSH to dx your thyroid, free t3/t4 tests may reveal more. I would find a good thyroid doc to address these issues along with celiac disease. I would also mention that you need to look into adrenal issues - especially if your cortisol is off. I'd call your local compounding pharmacy and ask for names of doctors who rx combo or natural thyroid meds. Then call around - maybe kiss a few frogs...but it sounds like you need to address your thyroid and adrenals along with gluten.

[biancad]

Thank you all for the posts. I'm starting to feel a bit better. I haven't had an "attack" for two weeks. I did eat some gluten-free pizza at CPK and threw up but rebounded by mid day the next day. I'm still quite fatigued and somewhat brain fogged but dry skin, yeast and sciatica are my chief complaints right now. I will go for the endoscopy and biopsy after the holiday. Fingers crossed we get to the bottom of this. No matter what, the elimination diet and gluten-free eating are here to stay. When I now reflect back on all of the times I've had a stomachache or what I thought was food poisoning over the last few years, I'm amazed that I didn't figure out it was the bread. All this time, I thought it was something else. Ugh.

[w8in4dave]

Ohh sweetie good luck!! I hope you have found your answer!! Let us know how your doing ok? Huggz !

[GFinDC]

Hi Bianacad,

 

Being hypothyroid could certainly cause some of your symptoms.  Hashimoto's thyroiditis is something celiacs get sometimes.  It is an auto-immune attack on the thyroid.  Vitamins and minerals being low can also cause many symptoms.

[0range]

You can have wonky thyroid results if you have Celiac (and vice-versa)... sometimes you have an additional (thyroid) autoimmune disease, like Hashimoto's or Graves, and other times it's untreated Celiac causing problems elsewhere. I have Hashi's and had extreme symptoms very similar to yours (shortness of breath, memory loss, paresthesia, you name it!) and ended up in emergency a few times -- but I was on a thyroid medication dose that was not right for me. I hope you find some answers soon!

[Juliebove]

Are you on any medications?  I just read about something last night but can't remember what it is called.  It's a very rare side effect that can happen with some medications and most Drs. are clueless about it.  It can cause swelling in any part of the body.  But when it causes swelling inside of you such as your lungs, stomach or various organs, it can cause shortness of breath.  Not saying that this is what you have but it's possible.

[biancad]

I'm not on any medications. I will see the liver doc and a immunologist in the next two weeks. Overall am feeling better though I begin to have foot and joint pain along with "attack" symptoms when I get glutened. I was shocked to find out that Trader Joe's pink salt is processed on a machine that processes wheat. Also, sashimi can still be cross contaminated from a cutting board or towels the sushi chefs use. I may never eat out again! I knocks me back over and over! 

I'm beginning to wonder if I shouldn't try an SCD diet for six months since I seem unable to eat grains, soy, coconut, dairy, eggs, honey, many fruits, tomatoes, etc. My diet is so limited and restricted right now. Frankly, I'm afraid of food at this point.

I've read that it may take a year to recover and being to add some of the above items back in but I really wonder if anyone fully recovers on a gluten free diet or if there will always be some lingering fatigue and stomach issues. ugh!