Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

jumpingjuniper

Recommended Posts

jumpingjuniper Rookie
jumpingjuniper
Posted

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!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

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 Rookie
jumpingjuniper
Posted
  • Author

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

cyclinglady Grand Master
cyclinglady
Posted

Have you looked into Mast Cell Activation Syndrome?

notme Experienced
notme
Posted

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 

  • 2 weeks later...
quincy Contributor
quincy
Posted

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 Enthusiast
jebby
Posted

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 2 months later...
jumpingjuniper Rookie
jumpingjuniper
Posted
  • Author

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 Grand Master
cyclinglady
Posted

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

jumpingjuniper Rookie
jumpingjuniper
Posted
  • Author

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 Rookie
jumpingjuniper
Posted
  • Author

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.

  • 6 months later...
DandelionH Apprentice
DandelionH
Posted

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.
 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,696
    • Most Online (within 30 mins)
      7,748
    Kerrie C
    Newest Member
    Kerrie C
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • RDLiberty
      Toothpaste question.

      By RDLiberty · Posted

      So, I've been using a gluten free labeled toothpaste since being diagnosed with celiac. No big deal, the toothpaste seems to work. Question is, I just realized it contains hydrated silica.  Now, I've heard that silicon dioxide can cause issues in some people with celiac (was that ever confirmed though?), so to be safe, I cut it out of my diet entirely. But, as I understand it, hydrated silica is related to silicon dioxide. Is that something to worry about, or is the hydrated form not known to cause issues like the silicon dioxide form?  I've never seen it in food, but nearly every toothpaste I look at contains hydrated silica?  Issue or not?  Any scientific research (Not opinion pieces, not health bloggers, you get my gist), but actual science, that says it's an issue? I have a hard time believing 99% of what I read on random internet searches.    Thanks so much, Renee. 
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Since 2015 we've spent extensive time in Italy and I've been able to eat their wheat products without incident. Initially, I was practically starving thinking foods in Sicily were not gluten-free.  An Italian friend who had lived in the US for over 20 years said she had celiac/gluten-free friends from the US who could eat Italian wheat products without problems. Hesitantly, I tried little by little without issues.  A few years later at a market, I asked a bread vendor if they had gluten-free loaves. Turns out she had lived in LA, said groups believe it's not the gluten that's causing our bodies harm, but potassium bromate; these groups have been trying to ban it.  Bromines and other halogens wreaks havoc to our endocrine system and, more specifically, our thyroids and immune systems. When bromines are ingested/absorbed into the body, it displaces iodine causing other health issues. Potassium bromate is a powerful oxidizing agent (dough 'conditioner') that chemically changes flour to enhance elasticity, bleaches the dough, and ages the flour much faster than open air.   Shortly thereafter while visiting friends in California, one family said they had gone gluten-free and the difference was incredible. The reason they choose this path was due them (a biologist/chemist/agriculturist scientist) having to write a portion of a paper about a certain product for the company he worked. Another company's scientist was directed to write the other portion. All was confidential, they weren't allowed to know the other company/employee.  After the research, they learned gluten was being removed from wheat, sent elsewhere, returned in large congealed blocks resembling tofu, and then added to wheat products. Potassium bromate has been banned for use in Europe, China, and other countries, but not in the US. Then we have the issues of shelf preservatives and stabilizers. What are we eating?  Why? We spend long periods of time in Italy and all has been good.  We just returned from an extended time in Greece;  no issues there either.  There is a man there we learned about on a travel show about Greece who walks the hills, picking herbs, pods, etc.  He is a very learned scholar, taught at the university level in Melbourne. It took a few days to locate him, but were finally successful. He too, is concerned about the additives and preservatives in American food (many of his customers are Americans, haven't been in the best of health, and have become healthier after visiting him). He suggested taking a food product from the US and the same product in Europe, and compare the different ingredients. Then ask why these things are being allowed in the US by the 'watch dog' of our foods and drugs. It would be amuzing if it weren't tragic. I'm presently looking for flour from Europe that I can make my own bread and pasta as the gluten-free bread is now $7.99 a (small) loaf.  BTW, studies are showing that many gluten-free individuals are becoming diabetic. My guess is because the gluten-free products are high in carbs. This is only my experience and opinion garnished by my personal research.  I hope it helps.  
    • knitty kitty
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By knitty kitty · Posted

      Symptoms that get worse if you don't supplement is a sign of malabsorption, possibly due to Celiac disease. Blood tests for nutritional deficiencies are not very accurate, and should be done when you have been off of supplements for eight to twelve weeks, otherwise the vitamin supplements you've taken will be measured.  The blood circulation system is a transportation system.  It transports the vitamins you've absorbed around the body, but blood tests don't give an accurate picture of the vitamin and mineral stores inside organs and tissues where they are actually used.  You can have "normal" blood levels but still have deficiencies.  This is because the brain demands stored nutrients be put into the blood stream to supply important organs, like the brain and heart, while other organs do without.   If you are taking Thiamine Mononitrate in your supplements, you are probably low in thiamine.  Thiamine Mononitrate is used in many supplements because it won't break down sitting on a shelf.  This also means Thiamine Mononitrate is difficult for the body to utilize.  Only thirty percent of Thiamine Mononitrate on the label is absorbed and even less is able to be utilized by the body.  A different form of Thiamine called Benfotiamine has been shown to promote intestinal healing.   Talk to your doctor about doing a genetic test to look for Celiac markers.   I'm concerned that if you do a gluten challenge (10 grams of gluten per day for a minimum off two weeks) in your weakened state, the nutritional deficiencies will become worse and possibly life threatening.  
    • ElisaAllergiesgluten
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By ElisaAllergiesgluten · Posted

      Hello, good afternoon!   I apologize, I didn’t see a notification and I’m just reading this. Thank you so much for sharing your thoughts and the link. Yes you are absolutely right, even so trying to get a response from them has been extremely difficult. They don’t answer but I will your practice of “guilty until proven innocent.”   I like and have a sense of trust here in this website, everyone is honest and thoughts are raw. The mutual understanding is amazing!   thank you Scott!
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.