Ongoing Symptoms, Not Due To Gluten - Please Help Me Help My Doctor Troubleshoot.

[jumpingjuniper]

Hello all,

 

I'll give a short version here and then details below! The short version is that I eat totally gluten free and have for a long time, and I still feel sick. I'm seeing my doc on Thursday and I was hoping that some of you could help me think of things to ask her, tests to suggest/request, etc.

 

Okay, now the details:

 

I was diagnosed in 2002 after about 15 years of symptoms. It took me a long time to feel better, but after about 3-5 years I felt generally good, though never awesome.

 

In 2011 I moved overseas and despite being very careful, had about a year's worth of cross-contamination exposure - so frustrating - and got very sick.

 

Again, it took a while but I'm generally healthier than I was then, but still not so great. I had a repeat biopsy in 2013 and the results were great. The GI said I had some of the most beautiful villi he'd ever seen, gotta love those doctors who are passionate about their chosen field!

 

Here and there, and particularly for the last two months, I've been feeling poorly. It seems to come in flares. Here are my main symptoms: 

 

- bloated/distended stomach

- digestive distress (both main kinds...)

- intermittent nausea

- reflux and heartburn (these are constant, they don't come only with flares)

- muscle pain

- joint pain

- stiffness

- feeling woozy/unwell after cardio exercise

- purple/black under my eyes

- pale complexion

- hair falling out more

- excema flares on my scalp (this is something that I get with active celiac, but this time it isn't going away. Also, every derm has a different opinion about what it actually is - excema, psoriasis, etc.)

- noise sensitivity

- touch sensitivity - this is both superficial and deep. E.g. burning/itchy/needles on the surface, and what feels like deep nerve pain when touched. Sometimes I cannot stand wearing clothing, being touched, being rubbed is torture, and even rubbing my own two fingers together hurts.

- pain at the tips of my finger tips

- some tingling in my hands and my feet

 

More recently, I've been having more and more of what I can only characterize as histamine reactions (I know this raises a flag for histamine sensitivity) - swelling, angry itchy skin, red and watery eyes, etc. I'm allergic to dust and mould and my reactions to both seem to be stronger than they used to be. Last April I was in another country camping and had a seasonal allergy-style reaction to a plant. I presumably got scratched by that plant hiking and ended up with a swollen face and then several days of a bad rash. I had been the same place the year before, albeit a month or so later, with no problems. Just last Friday night, I was at my desk and went and ate dinner. I sat back down at my desk - same clothes, same room, etc. - and started feeling itchy and then my eyes got red and watery, I swelled up, and then I spent the rest of the weekend somewhat swollen and with unbelievably senstive and painful skin. So something new is happening with me allergically.

 

Another important point is that my blood labs usually come back normal.

 

If you've made it this far, thank you!

 

I know that a lot of people on here are great detectives and know a lot about celiac and associated diseases. I try to stay on top of things but must admit that my emotions are starting to get the best of me...I'm overwhelmed and worried.

 

What would you recommend I try to pursue with my doctor?

 

I'd like to make the best use of this upcoming doc visit. My doctor is generally kind and open-minded.

 

Thank you!!

[1desperateladysaved]

Hello all,

 

I'll give a short version here and then details below! The short version is that I eat totally gluten free and have for a long time, and I still feel sick. I'm seeing my doc on Thursday and I was hoping that some of you could help me think of things to ask her, tests to suggest/request, etc.

 

Okay, now the details:

 

I: 

 

- bloated/distended stomach

- digestive distress (both main kinds...)

- intermittent nausea

- muscle pain

- joint pain

- stiffness

- feeling woozy/unwell after cardio exercise

- purple/black under my eyes

- pale complexion

- excema flares on my scalp (this is something that I get with active celiac, but this time it isn't going away. Also, every derm has a different opinion about what it actually is - excema, psoriasis, etc.)

- noise sensitivity

- touch sensitivity - this is both superficial and deep. E.g. burning/itchy/needles on the surface, and what feels like deep nerve pain when touched. Sometimes I cannot stand wearing clothing, being touched, being rubbed is torture, and even rubbing my own two fingers t

These ideas are intended for Jumping Juniper, who has been gluten free a long while and currently is having difficulties.  I don't think everyone needs to follow such an aggressive program.

 

I deleted symptoms I do not share.  Occasionally I feel this touch sensitivity you mention, the rest of the time I am numb.  My chiropractor told me it is neuropathy.  The extra sensitive touch she called hyper-sensitivity.  Just for my own curiousity,  Are you numb part of the time?  I really freak out when I "feel my clothes."  But far in my past, I recall a time when other 5th graders would touch me and it would tickle extremely.  Because I am numb part of the time, when I feel it is TOO MUCH.  Too loud.  I want my numbness to go away, but fear the type of super-sensitivity you mention.

 

I use to have eczema.  This improved with taking a program of supplements that were tested to be needed by a chiropractor.  I also began making homemade soap and one of my children gets rashes when she doesn't use it. I don't use anything but it, now.   I believe it is an advantage to use this soap.  Mine is made with olive, coconut, and palm oil.  If one can tolerate essential oils, peppermint is helpful to ailing skin.

 

My bloating was helped by going gluten free.  Because sometimes it was down.  However, I had many more foods that I didn't tolerate. My waist still was abnormally large for my body size and weight. I finally took nearly all foods I use to eat out of my diet.  After I got different foods to eat, the bloating really seems to be resolving. I also lost lymph back up and over 10 lbs.  I am still eating, but I eat elk, lamb, yak, bison, and duck for some meats.  For vegetables, I have swiss chard, spinach,Turnips, collard greens, jicama, and burdock root for some examples.  I suggest anything healthy that you can eat that you didn't eat when you were sick.  Try Fennel Bulb or seeds For sure!  For me I am trying a treatment invented by Dr. Devi that helps ones body to reset the reactions to allergens.  I am not yet in a position to recommend (or not) as I have just begun.  Others I know of really recommended it after doing it.  You may want to look into this yourself.  Many of the symptoms you mentioned such as noise and  exercise reactions are mentioned in the literature I have read in the book Say Good bye to Illness by Dr. Devi.

 

Have you noticed any seasonal difficulties that my indicate airborne allergies causing the bloating?  I discovered (thanks to my naturopathic doctor) that when I wore a mask outside it helped my bloating to go down.  This was because I live by a silo being used for grain and soy.  At any rate you may want to consider allergies or intolerances beyond gluten may be holding you back and what to do about it.

 

I believe that baggy/blue sacks under the eyes are sometimes called "Allergy eyes."  I see them under my eyes at times.

 

Best wishes figuring out what plays out to be a very complicated life.  I hope you will be able to get through your recent struggles and really feel good again.

 

Dee

[jumpingjuniper]

Hi Dee, thank you for your kind message and suggestions. No real updates here but hopefully I'll get it figured out eventually

[cyclinglady]

Have you looked into Mast Cell Activation Syndrome?

[notme]

have you tried taking an allergy medicine?  i take zyrtec - the 24 hour kind.  if you think it's something you're eating, keep a food journal and compare your symptoms with what you are eating.  i hope you get it figured out, but sounds like a combination of allergies    or what cyclinglady said ^^   good luck 

[quincy]

I would strongly recommend you get tested for Lyme Disease with the Western Blot test. The two best labs are Stonybrook and Igenix. Try not to use the 2 most common labs, their tests are not as sensitive.

 

ALL of your symptoms are indicative of Lyme. I had many of them myself. I was dx'd with Celiac in 2010 and after 3 years on a gluten free diet I continued to suffer with a lot of muscle pain, stiffness in my back, constantly going to physical therapy. I also started getting terrible racing heart, bladder problems and all sorts of weird things.

 

If you have been tested already and it came back negative, I would retest. sometimes a month's worth of antibiotic therapy will cause the Western Blot test to start showing Lyme bands as you kill off some of the spyrochetes the immune system  starts to recognize the lyme and starts making some antibodies that the test will pick up eventually. Many people who are sick like you have an ELISA test or a Western Blot test and it comes back negative and they stop pursuing Lyme. It can be a mistake.

 

I have been on antibiotics for over a year and with good probiotics I have been able to do this and improve. Also test for the MTHFR genes to see if you have any mutations in your methylation/detox pathways. Believe me, it took years to piece all of these things together in my own journey to get better.  

[jebby]

Your symptoms sound a lot like mast cell activation syndrome, which is my celiac "tag along" diagnosis which led me to continue to be quite ill after feeling better on the gluten-free diet.

 

If you've ever had to submit a 24 hour urine collection for methylhistamine and urinary prostaglandins, which had to be kept chilled, then you've been tested for it. If you haven't, then chances are that your doctor(s) have not thought about it. Please take the time to read about it and advocate for testing.

 

Good luck!

[jumpingjuniper]

Thank you for your replies.

I've seen my doctor twice since I last posted and I don't think she's taking me seriously at all. She's chalking it up to psychological stress and has referred me to a psychiatrist.

I spoke with her about histamine intolerance for a long time and she didn't want to do the tests. Having read about the tests myself, I didn't want to push for them because I'm not convinced they'd do them right. I should maybe find a doctor who would. I'm in Europe.

I see my GI next week. I'm going to ask for tests for dysbiosis or whatever else is relevant.

I feel like I'm going crazy. My physical symptoms are real but the response I've been receiving from health care professionals is getting to me and I keep thinking, what if they are all caused by stress?

But I'll persist because that's what it took to get the celiac dx in the first place.

[cyclinglady]

FYI, Jebby who posted about Mast Cell is a medical doctor (Peditrician). So, this is not a quack illness!

[jumpingjuniper]

Yes, I know, I read her blog Thanks.

It's not a quack illness but it's not widely tested for either and there's a decent risk of the tests being done wrong, so if I want them I should probably seek out a doctor who knows more about it than mine.

[jumpingjuniper]

I saw my GI today and he was not helpful. He didn't even really listen. He's a nice guy, really, which is a plus, but he's not going to be figuring out any mysteries for me.

I did ask for the lactulose test and he basically said yes to appease me (it will be negative but you can have it if you want to see). Anyway, I'm glad I'll get that.

I feel like I'm in a repeat of the nightmare of having undiagnosed celiac. Except this time it's almost worse because I know just how wrong the doctors can be. My symptoms are less severe, thank goodness.

Can anyone recommend doctors who will do the MCAS test? It doesn't matter where they are.

[DandelionH]

Hi!
I'm wondering how you went with these tests?!

Pretty confused as to why my symptoms have gotten better but new ones (definitely classic histamine intolerance and related to those foods) are appearing NOW. I thought it might be that I feel good so I notice feeling bad more but I definitely didn't have all this happening before.