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ironictruth

for those waiting for a positive biopsy and a questions about adrenal issues

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Posted on here before. Was gluten-free after positive DGP IGA, then did 6 week challenge with a normal biopsy. DQ2 positive, brother with confirmed celic, father is highly likely as well, nephew with gene and oat allergies. Been hell ever since that freaking gluten challenge last winter. Doctor's were treating me like it was all in my head and I visited the ER more times then I care to admit in the last 7 months. So many days I would spend crying in a bathroom or driving my son to school trying to logistically figure out where to pull over on the expressway in case I felt like passing out. I am pretty sure my boyfriend thinks I am nuts, though he would never say it. Thankfully, my own boss told me that when I explain it, it sounds crazy until you have seen it. He has witnessed a few episodes and I guess I often turn quite pale. 

It started with horrible chest pain that kept me pacing the floors at night. This did go away when I went gluten-free again. Then back pain between the shoulder blades, shortness of breath, pain in the neck/ear, episodes of feeling like I was going to pass out, episodes of other weird crap which I now know is some kind of inflammation in the gut which kind of "travels" upwards, even making your eyes and face feel numb and weird, and numbness in feet/arms. I had a a squeezing sensation where the belly is but no real pain. I developed a mild case of POTS on some days which creates dizziness which I self treat with salt or gluten-free soy sauce and water. My Ferritin dropped which I self treated for 4 months with liquid iron and yes, it is now in decent shape and not too high and I have discontinued the iron. My heart rate will often be in the low 50's or even 40's at rest then go ape s$#& when I stand up. For me a heartrate of 110 standing for a glass of water is high, it should typically be around 75-85. My blood pressure does wacky stuff as well. Much lower then it used to be. The docs seem to praise you for 90's/50's but to me it seems low and was never that low before and it makes me feel SLOW and dizzy. Plus it has dropped into the 80'/ 40's and one time in the freaking 60's, then I really felt like s$#&. I have skipped heartbeats and a lovely arrhythmia that got set off in the gym one day but self corrected and has never been caught on a monitor of course. I eat often, I drink water. My labs are normal for the most part. Thyroid labs are good. Over the last 7 months the only thing that has dropped and been flagged is alkaline phosphatase and globulin which go back up then down then up again. I know these are related to malnutrition. I have also had low electrolytes but those are good now. 

Now, admittedly, I am a moron. I was still going out to eat and ordering off the gluten-free menu until very recently. I was still using my boyfriend's teflon pots that pasta had been cooked in. I did not check makeup, or soaps, or lotions or seasonings. I did make my own place gluten-free, even a new toaster. When you have a negative biopsy, and a close friend with confirmed celiac who CAN order off the gluten-free menu, you think, well, maybe I can too!  My celiac sibling is EXTREMELY sensitive to gluten though. 

In the last month, I developed a pain where the above squeezing sensation was and it became tender to touch (upper tummy in the middle). I also started getting nausea throughout the day. I lost my tolerance for exercise and lost 5 pounds in two weeks for no reason. Two weeks ago I developed a 102.7 fever from a virus and knew my body was not going to handle it well when my BP dropped with everything going on so I spent 2 days in the hospital. Had the worst migraine of my life which they ended up doing a freaking spinal tap for. My cortisol levels were normal in the hospital and 5 days later they were low. 

The pancreas and liver look fine and I have no gallbladder. I even had an Upper endo ultrasound recently. I basically begged that GI doc to tell me if this could all be caused by celiac at which point he quoted, and I am guessing a fairly accurate quote since his speech was rehearsed, how much money the gluten-free industry makes. After assuring him I had no desire to spend $8 on a loaf of bread he finally did admit that pain, nausea, and weight-loss generally occur when the damage has advanced. 

 I recently found an endo to see who was highly rated. Not because my primary or GI thoughtto refer me to one!  If anyone in Upstate NY needs one his name is Shirwan Mirza. He informed me that this is due to celiac disease and that some of my episodes are due to hypoglycemia because of malabsorption. So I am now carrying around a box of craisins with me, eating every two hours it seems, am off dairy and will be replacing more pots/pans and checking all toiletries. I JUST started this and am not good at it. My sugar most drop from normal to low pretty quickly when it happens.  It often takes me awhile to recover. He spent an hour listening to me, however, I did not have a chance to tell him about the weird heart rate and BP fluctuations or the shortness of breath. So there are additional "episodes" which are not sugar related. 

Oh and the head pressure! Like someone is squeezing my brain on both sides of my head. What the heck is that?! This is new in the last week.

I guess I am just ranting, but want anyone out there waiting for the gold standard biopsy to come back positive to really reconsider, especially if you have a family history, the gene, and any positive bloodwork. And although I do not have the antibodies for Hashi's yet, my thyroid ultrasound appears to look like Hashi's, is enlarged on one side, and I have had pain in that side of my neck and ear since February. My endo has informed me that the antibodies have started to attack my thyroid and we will be doing a follow up ultrasound after I have been strictly gluten-free for sometime and have taken the supplements/probiotics. Now, apparently my adrenal system is apparently suffering as well. I have periods during most days where I feel pretty good and other periods when I am mentally convinced I must have cancer. Sadly, the last few weeks have been worse then better and it is difficult to function as a mom and at work. The stress of being ill does not help and I am sure everyone here knows it is a bad cycle. Unfortunately, my time off from work is limited and needs to be saved for appointments. Otherwise I think I could benefit from 2-3 weeks off. My latest anxious thought is the worry that Addison's will be next on my list with the BP drops, sugar drops, and low cortisol. I was all sorts of messed up today with heart rate and BP's all over the place and I feel physically and mentally depressed for the first time since a heartbreak (lol, looking back, I would do that over again a hundred times to avoid all this). 

Does anyone have experience with cortisol dropping and NOT ending up with Addisons? I had not had a chance to talk with the endo since the labs returned, His NP spoke with me and said it is common in celiac for cortisol to drop a bit but I could not find anything that really confirmed the connection in any scientific way online. Plus, the cortisol had been fine in the hospital the week before. We did not run any specific Addisin tests, just a serum cortisol. I think he looked at pituitary gland labs and those were good.  I will say, I think sleeping for 2 days and being hooked up to salted fluid bags in the hospital has a tendency to relax the system. My endo does not want me on an adrenal tincture, but I am not sure how to get the cortisol level up. 

I lied down in bed this afternoon, ate often, increased salt and water, ate a lemon and drank ginger tea but still felt like s$#& from 7AM-4PM. 

Anyone with this experience and good advice? 

 

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My sister's heart started doing weird stuff, as if she were having a heart attack, and after the ECG showed it was NOT a heart attack, they ran a ran bunch of blood, and that's how she found out she has celiac disease.  So you're not alone in the "heart doing weird stuff" department.

She also has no tolerance for high fructose corn syrup.  It makes her light headed and dizzy.  Tests found nothing wrong with her sugars (our father was diabetic, and her mother is also).  Still, she avoids HFCS because a dizzy spell is still a dizzy spell, regardless of the cause.

After I completed a wheat elimination challenge, and broke out in hives, my nurse practitioner explained that the cortisol levels had been keeping my reactions in check, then when I eliminated the problem my cortisol levels dropped off.  When I tested the trigger (wheat) I didn't have the cortisol to protect me and I had a severe reaction.  Since I've gone gluten free officially I've started having asthma symptoms out of season.  I'm thinking the elevated cortisol levels had been keeping my asthma symptoms in check, but now they've dropped off, I don't have that safeguard anymore, and am experiencing a lot of bronchial inflammation, requiring medication.   I don't know if that resonates with your experience or not, but I wanted to share, just in case.

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The human body is so weird! It is a comfort to hear others go through similar things. Every new added symptoms scares the heck out of me. I admit, i still am super nervous that it is something serious. For months my primary and GI said none of this could be caused by celiac but the endo assures me the root problem is celiac and all of this is the branches and leaves of the root cause. 

Did your cortisol drop below normal? Is anyone helping you figure this out? That sounds awful. 

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Well my levels haven't been tested.  I suffer from what doctors refer to as The Atopic Triad:  Asthma, Eczema, and Environmental Allergies, concurrently, and within a family group.  The genetic link puts it in the realm of autoimmune disorders.  Anyway, because I've suffered with these conditions all my life, my cortisol levels have always been elevated to keep my symptoms from sending me to the hospital.  At times my poor body just can't keep up with the demand for cortisol and I have to take inhaled steroid medication and steroid creams.  More than likely, my cortisol levels have merely dropped to those of a normal, non allergic person, and my body doesn't know how to handle it, lol.  

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17 hours ago, ironictruth said:

Posted on here before. Was gluten-free after positive DGP IGA, then did 6 week challenge with a normal biopsy. DQ2 positive, brother with confirmed celic, father is highly likely as well, nephew with gene and oat allergies. Been hell ever since that freaking gluten challenge last winter. Doctor's were treating me like it was all in my head and I visited the ER more times then I care to admit in the last 7 months. So many days I would spend crying in a bathroom or driving my son to school trying to logistically figure out where to pull over on the expressway in case I felt like passing out. I am pretty sure my boyfriend thinks I am nuts, though he would never say it. Thankfully, my own boss told me that when I explain it, it sounds crazy until you have seen it. He has witnessed a few episodes and I guess I often turn quite pale. 

It started with horrible chest pain that kept me pacing the floors at night. This did go away when I went gluten-free again. Then back pain between the shoulder blades, shortness of breath, pain in the neck/ear, episodes of feeling like I was going to pass out, episodes of other weird crap which I now know is some kind of inflammation in the gut which kind of "travels" upwards, even making your eyes and face feel numb and weird, and numbness in feet/arms. I had a a squeezing sensation where the belly is but no real pain. I developed a mild case of POTS on some days which creates dizziness which I self treat with salt or gluten-free soy sauce and water. My Ferritin dropped which I self treated for 4 months with liquid iron and yes, it is now in decent shape and not too high and I have discontinued the iron. My heart rate will often be in the low 50's or even 40's at rest then go ape s$#& when I stand up. For me a heartrate of 110 standing for a glass of water is high, it should typically be around 75-85. My blood pressure does wacky stuff as well. Much lower then it used to be. The docs seem to praise you for 90's/50's but to me it seems low and was never that low before and it makes me feel SLOW and dizzy. Plus it has dropped into the 80'/ 40's and one time in the freaking 60's, then I really felt like s$#&. I have skipped heartbeats and a lovely arrhythmia that got set off in the gym one day but self corrected and has never been caught on a monitor of course. I eat often, I drink water. My labs are normal for the most part. Thyroid labs are good. Over the last 7 months the only thing that has dropped and been flagged is alkaline phosphatase and globulin which go back up then down then up again. I know these are related to malnutrition. I have also had low electrolytes but those are good now. 

Now, admittedly, I am a moron. I was still going out to eat and ordering off the gluten-free menu until very recently. I was still using my boyfriend's teflon pots that pasta had been cooked in. I did not check makeup, or soaps, or lotions or seasonings. I did make my own place gluten-free, even a new toaster. When you have a negative biopsy, and a close friend with confirmed celiac who CAN order off the gluten-free menu, you think, well, maybe I can too!  My celiac sibling is EXTREMELY sensitive to gluten though. 

In the last month, I developed a pain where the above squeezing sensation was and it became tender to touch (upper tummy in the middle). I also started getting nausea throughout the day. I lost my tolerance for exercise and lost 5 pounds in two weeks for no reason. Two weeks ago I developed a 102.7 fever from a virus and knew my body was not going to handle it well when my BP dropped with everything going on so I spent 2 days in the hospital. Had the worst migraine of my life which they ended up doing a freaking spinal tap for. My cortisol levels were normal in the hospital and 5 days later they were low. 

The pancreas and liver look fine and I have no gallbladder. I even had an Upper endo ultrasound recently. I basically begged that GI doc to tell me if this could all be caused by celiac at which point he quoted, and I am guessing a fairly accurate quote since his speech was rehearsed, how much money the gluten-free industry makes. After assuring him I had no desire to spend $8 on a loaf of bread he finally did admit that pain, nausea, and weight-loss generally occur when the damage has advanced. 

 I recently found an endo to see who was highly rated. Not because my primary or GI thoughtto refer me to one!  If anyone in Upstate NY needs one his name is Shirwan Mirza. He informed me that this is due to celiac disease and that some of my episodes are due to hypoglycemia because of malabsorption. So I am now carrying around a box of craisins with me, eating every two hours it seems, am off dairy and will be replacing more pots/pans and checking all toiletries. I JUST started this and am not good at it. My sugar most drop from normal to low pretty quickly when it happens.  It often takes me awhile to recover. He spent an hour listening to me, however, I did not have a chance to tell him about the weird heart rate and BP fluctuations or the shortness of breath. So there are additional "episodes" which are not sugar related. 

Oh and the head pressure! Like someone is squeezing my brain on both sides of my head. What the heck is that?! This is new in the last week.

I guess I am just ranting, but want anyone out there waiting for the gold standard biopsy to come back positive to really reconsider, especially if you have a family history, the gene, and any positive bloodwork. And although I do not have the antibodies for Hashi's yet, my thyroid ultrasound appears to look like Hashi's, is enlarged on one side, and I have had pain in that side of my neck and ear since February. My endo has informed me that the antibodies have started to attack my thyroid and we will be doing a follow up ultrasound after I have been strictly gluten-free for sometime and have taken the supplements/probiotics. Now, apparently my adrenal system is apparently suffering as well. I have periods during most days where I feel pretty good and other periods when I am mentally convinced I must have cancer. Sadly, the last few weeks have been worse then better and it is difficult to function as a mom and at work. The stress of being ill does not help and I am sure everyone here knows it is a bad cycle. Unfortunately, my time off from work is limited and needs to be saved for appointments. Otherwise I think I could benefit from 2-3 weeks off. My latest anxious thought is the worry that Addison's will be next on my list with the BP drops, sugar drops, and low cortisol. I was all sorts of messed up today with heart rate and BP's all over the place and I feel physically and mentally depressed for the first time since a heartbreak (lol, looking back, I would do that over again a hundred times to avoid all this). 

Does anyone have experience with cortisol dropping and NOT ending up with Addisons? I had not had a chance to talk with the endo since the labs returned, His NP spoke with me and said it is common in celiac for cortisol to drop a bit but I could not find anything that really confirmed the connection in any scientific way online. Plus, the cortisol had been fine in the hospital the week before. We did not run any specific Addisin tests, just a serum cortisol. I think he looked at pituitary gland labs and those were good.  I will say, I think sleeping for 2 days and being hooked up to salted fluid bags in the hospital has a tendency to relax the system. My endo does not want me on an adrenal tincture, but I am not sure how to get the cortisol level up. 

I lied down in bed this afternoon, ate often, increased salt and water, ate a lemon and drank ginger tea but still felt like s$#& from 7AM-4PM. 

Anyone with this experience and good advice? 

 

I am sorry that you are still struggling!  But, as you said yourself, you are probably not avoiding gluten.  Consider really buckling down (e.g. Not using your boyfriends pots and pans, looking at EVERYTHING that you injest, including lotions, not going out to eat, avoiding processed foods for a while, etc).  

No sense worrying about other possible health issues until you know for sure that gluten is not causing your problems.

Ask your GP for a follow-up celiac panel.  I know your biopsy was negative, but have your antibodies come down?  

Take care.  

 

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20 hours ago, cyclinglady said:

I am sorry that you are still struggling!  But, as you said yourself, you are probably not avoiding gluten.  Consider really buckling down (e.g. Not using your boyfriends pots and pans, looking at EVERYTHING that you injest, including lotions, not going out to eat, avoiding processed foods for a while, etc).  

No sense worrying about other possible health issues until you know for sure that gluten is not causing your problems.

Ask your GP for a follow-up celiac panel.  I know your biopsy was negative, but have your antibodies come down?  

Take care.  

 

We just bought a few new kitchen items yesterday and the bf gave me my own space in the kitchen. I also have a list of stuff from the endo so I have new toothpaste and makeup items as well. 

Yesterday, I had an episode, bp dropped, then soared, then recovered. I cannot function during these freaking things. I think it might be vagal, bp starts dropping and the body senses it so pushes adrenaline. But it messes me up for some time.

 that being said, Chili was probably the stupidest thing I could have made for dinner for us last night. It is just so weird because this isn't your "normal" belly ache so I am still not used to this. I guess I should hop over to the Newbie boards and scroll.

DGP IGA was the only test that came back weak positive twice last year and it went negative very shortly after stopping gluten. My sibling, with extensive damage via biopsy, always had negative bloodwork. I am unsure if they used DGP on him, i know my son's doc did not so he will being seeing the endo as well.  I did read that DGP was found to be positive in young children before ttg levels rise, so perhaps it is an early indicator. i could ask for the panel. 

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I had the hypclycaemia episodes, palpitations and blood pressure issues also. All much better after going gluten free, but I also try and eat to control blood sugar spiking as much as possible*. I know you say you eat frequently, but are you eating low GI foods which take longer to convert to sugar? I try and get protein with every meal also. 

 

 

*Full disclosure - I also eat too much chocolate :unsure:

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I only test positive on the DGP IGA, but in my case, my biopsy was positive.  Remember, the celiac blood tests are not perfect.  They are just one of the tools used to diagnose celiac disease.  At this point, your best choice is to completely embrace the gluten-free diet and give yourself six months to a year to heal (hopefully not longer).  Not going gluten free (or doing a crummy job of it) seems to compound your problems.  celiac disease symptoms can wax and wane (quoting Drs. Murray or Greene). 

My last glutening (measured by a DGP IGA test) took me three months to recover.  While I cooked chili for my family, I was eating mushy stew that was barely tolerated by my gut.  Not eating meant no pain and eating anything meant pain (not to mention a slew of new issues I had never experienced).  Six months later, I gained back lost weight.  It can take that long.  Remember celiac disease is an autoimmune disorder triggered by gluten.  But once a flare-up occurs, it can take off and keep damaging your gut.  Everyone's flare-up experiences are different.  Unlike lupus or other AI diorders, we have the chance of managing flare-ups -- avoid gluten at all costs.

read the Newbie section.  Read articles on VeryWell by Jane Anderson (she presents with DH).  The more you know about gluten, the better off you will be. 

It took me a year before I ever ate out again (with the exception of a 100% gluten free restaurant).  Like childbirth, it takes a while to forget how bad things can get!  ? 

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21 hours ago, cyclinglady said:
1 hour ago, Jmg said:

I had the hypclycaemia episodes, palpitations and blood pressure issues also. All much better after going gluten free, but I also try and eat to control blood sugar spiking as much as possible*. I know you say you eat frequently, but are you eating low GI foods which take longer to convert to sugar? I try and get protein with every meal also. 

 

 

*Full disclosure - I also eat too much chocolate :unsure:

Jmg, thank you for that. The freaking episodes are scary. I just happened to catch the bp yesterday and it takes like an hour to recover from the drop-hike-normalize cycle. I just learned of the sugar episodes as well. Carry craisins with me now and yes, I am also learning to balance my protein. 

Cycling lady, you are right. I was doing a poor job, in part because I did not believe it since my GI and primary said celiac could not cause this. The endo, my sibling and these boards are helping. 

My big D issues were primarily in the morning, then went away with gluten-free. But I had 2 bad episodes in July. one after eating from a salad bar and using the "contains no gluten ingredients" items. No more salad bars! I had a bunch of issues after the gluten challenge and periods of feeling better. But the pain and nausea kicked in after these latest episodes. 

Now I am short of breath and my heart races going up a flight of stairs when I could run 5 weeks ago. The NP at the endo's says to go to the ER but I am sick of doing that. I am not sure if my ferritin is dropping again because I stopped the iron or if the inflammation makes it hard to breathe. I just got done wearing a heart monitor for 28 days so it is not my actual heart. 

 

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I am the Queen of Vasovagal Syncope!  Seriously, I had it since I was a kid.  Who knows what sets it off?  My last episode was on a plane to Rome this summer.  Pilot was ready to divert the plane, but when I came to my senses (luckily a doctor was on board), I knew that I already had a full cardio work up and that I was good to go for another 50 years.  They just booted my hubby and kid out of their seats so that I could lay down and vomit....(ugh that always happens after passing out).  This time I really jerked around (hubby said seizures, but they were not)  and scared the ^%*# out of everyone.  As a kid, it happened a lot in church (no a/c back then, we think this was the cause).  We always got to leave early which made my brothers happy!  ?  hummm....I was on the plane with those same brothers....could they be the issue?  Is this a pattern?  

The rest of my trip went smoothly.  I have not shared this before because it is kind of embarrassing!  I want to encourage people to travel, but preferably after they master the gluten-free diet.  I managed very well this trip.  

So, stop worrying (another big sign that can be attributed to celiac disease) and concentrate on your gluten-free diet.   Email your doctor and tell him about being out of breath.  Ask for a complete CBC and ferritin to see if you are anemic.  You do not want to take iron without lab results.  As a diabetic, I use Smarties candies (glucose)  because they work faster than Craisins and can be measurable so you do not over correct.    Read up on it.  And take my advice with a grain of salt (I can only offer common sense).    You do not know me and I am not a doctor!  

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On 8/14/2016 at 11:56 AM, cyclinglady said:
1 hour ago, cyclinglady said:

I am the Queen of Vasovagal Syncope!  Seriously, I had it since I was a kid.  Who knows what sets it off?  My last episode was on a plane to Rome this summer.  Pilot was ready to divert the plane, but when I came to my senses (luckily a doctor was on board), I knew that I already had a full cardio work up and that I was good to go for another 50 years.  They just booted my hubby and kid out of their seats so that I could lay down and vomit....(ugh that always happens after passing out).  This time I really jerked around (hubby said seizures, but they were not)  and scared the ^%*# out of everyone.  As a kid, it happened a lot in church (no a/c back then, we think this was the cause).  We always got to leave early which made my brothers happy!  ?  hummm....I was on the plane with those same brothers....could they be the issue?  Is this a pattern?  

The rest of my trip went smoothly.  I have not shared this before because it is kind of embarrassing!  I want to encourage people to travel, but preferably after they master the gluten-free diet.  I managed very well this trip.  

So, stop worrying (another big sign that can be attributed to celiac disease) and concentrate on your gluten-free diet.   Email your doctor and tell him about being out of breath.  Ask for a complete CBC and ferritin to see if you are anemic.  You do not want to take iron without lab results.  As a diabetic, I use Smarties candies (glucose)  because they work faster than Craisins and can be measurable so you do not over correct.    Read up on it.  And take my advice with a grain of salt (I can only offer common sense).    You do not know me and I am not a doctor!  

Omg! That is awful. I read some about vagal stuff with celiac. I wonder if that was your issue as a kid too. Could you have developed a secondary brother intolerance?! (;

I have yet to pass out, close, but my body seems to be self correcting in the form of hiking my bp. The other day I felt a warm rush and shortness of breath, then it was done. Today, 3 hours AFTER shipping the halter monitor back, i got short of breath, arrhythmia, warm rush, then gone. I also read about Roemheld, or gastrocardio syndrome where gastro issues cause heart issues but really there is nothing wrong with your heart. Hoping and praying. 

My ferritin dropped a lot, but no where near anemia. I caught it in March i think and was on both capsules and liquid iron 3x a day from then until about 2 weeks ago. They did test my iron 10 days ago and it was fine. Not low and nowhere near too high. But I may ask again to see if it is dropping since i had just stopped taking it. 

Yes, unfortunately I had to start low dose xanax prn over all of this as well. I will often take it after an episode to calm myself and give mysel f a break. Taking it during an episode is BAD, it does not cure it (at one point I thought maybe this was all in my head so tried it several times)  and it adds to the feeling of passing out. 

Any tips on keeping yourself from passing out?  

 

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6 hours ago, ironictruth said:

 

Just be sure all medications (even probiotics) are actually gluten free.  That means calling the manufacturer!  

Tips to prevent passing out?  Just the standard 1st Aid.....head between your knees while sitting or just laying down.  There is no way for me to prevent passing out.  It just happens.  The goal is to protect myself from a head injury or something.  Falling just a foot short of the floor while unconcious can do some real damage!  ?

Seriously, you can make yourself really sick by worrying so much.  Do some meditation or prayer.  I like to get outdoors for a ride, walk or run.  Just sitting outside can do wonders for your soul.  

Edited by cyclinglady

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10 hours ago, cyclinglady said:

Just be sure all medications (even probiotics) are actually gluten free.  That means calling the manufacturer!  

Tips to prevent passing out?  Just the standard 1st Aid.....head between your knees while sitting or just laying down.  There is no way for me to prevent passing out.  It just happens.  The goal is to protect myself from a head injury or something.  Falling just a foot short of the floor while unconcious can do some real damage!  ?

Seriously, you can make yourself really sick by worrying so much.  Do some meditation or prayer.  I like to get outdoors for a ride, walk or run.  Just sitting outside can do wonders for your soul.  

My endo's office researches all meds, probiotics and vitamins for gluten and only wants us buying those products. I had to get rid of my old vitamin last week. 

The last month has been so bad that even weekends are fraught with developing plans to have a backup for my son ICE. Work is piling up, etc, then the health episodes too. So last night I decided to take today. My son is with his dad today. My time off is dwindling but I really cannot take any time off work to recover so I figure I can give myself 1 day. Columbia sent me peter Green's book and there are some movies I would like to watch. Today is my day! 

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On 8/13/2016 at 11:13 PM, Fundog said:

Since I've gone gluten free officially I've started having asthma symptoms out of season.  I'm thinking the elevated cortisol levels had been keeping my asthma symptoms in check, but now they've dropped off, I don't have that safeguard anymore, and am experiencing a lot of bronchial inflammation, requiring medication. 

I've been experiencing the same thing - except in opposite! I'm in the process of getting tested for celiac, but I had asthma, eczema, and food allergies (all nuts + peanuts, egg, fish) plus being lactose intolerant. However, I outgrew the childhood asthma and it had lessened so much so that I only had maybe one episode a year at most. Now I've been getting (mild-ish) asthma attacks but I've noticed they're only when I'm "testing" or "on" gluten. (I had been eliminating and then re-introducing gluten for 3 weeks each time earlier this year).

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11 hours ago, stephm said:

I've been experiencing the same thing - except in opposite! I'm in the process of getting tested for celiac, but I had asthma, eczema, and food allergies (all nuts + peanuts, egg, fish) plus being lactose intolerant. However, I outgrew the childhood asthma and it had lessened so much so that I only had maybe one episode a year at most. Now I've been getting (mild-ish) asthma attacks but I've noticed they're only when I'm "testing" or "on" gluten. (I had been eliminating and then re-introducing gluten for 3 weeks each time earlier this year).

I have mild asthma as well (tested recently) and had it as a kid and "outgrew it". But it is also back. My brother w/ celiac has to be on an asthma medication post diagnosis.

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Just so y'all know:  asthma is a lifelong condition.  It may become dormant, but you do not "outgrow" it.  It can resurface at any time.  It is genetic.  It is part of what doctors call the Atopic Triad: Asthma, Eczema, and Hay fever.  Family members will exhibit any one or combination of the three, demonstrating the genetic link between them.  Many doctors consider the set to be autoimmune.  One of my sisters and I have the whole set. Another sister only has two out of three, and the other sister has celiac, but no atopic conditions.  A link, perhaps?  It is a bit too coincidental to dismiss, don't you think?

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2 hours ago, Fundog said:

Just so y'all know:  asthma is a lifelong condition.  It may become dormant, but you do not "outgrow" it.  It can resurface at any time.  It is genetic.  It is part of what doctors call the Atopic Triad: Asthma, Eczema, and Hay fever.  Family members will exhibit any one or combination of the three, demonstrating the genetic link between them.  Many doctors consider the set to be autoimmune.  One of my sisters and I have the whole set. Another sister only has two out of three, and the other sister has celiac, but no atopic conditions.  A link, perhaps?  It is a bit too coincidental to dismiss, don't you think?

I did not know that! I just assumed I outgrew it. I used to get asthmatic reactions to the cold virus as a kid. My son unfortunately often does as well. No eczema but I do get a weird sun related rash with small itchy bumps on my arms/hands if I am out in the sun and forget sunscreen. 

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Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron. 

I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative. 

My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself.

Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a f$#%ing mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up. 

Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.

 A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th. 

8 months ago, I took a multivitamin when I remembered it and that was it. 

End rant. Maybe now that it is off my chest I can finally sleep. 

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Good grief!  :o. I'm so sorry, I wish there was something I could do or say to help you.  I agree with the NP, your primary needs to be requesting copies of your records from the other doctors, as well as the records and lab reports from your hospital stay.  They are supposed to work together as a team, not just individually out in left field.

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