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

frustrated and not feeling well

ironictruth

Recommended Posts

ironictruth Proficient
ironictruth
Posted

I guess this is a rant. And a simple: anyone else have this s$#&?

Ok, so I was gluten light for roughly 2 years, not really knowing what gluten was. I guess just carb light. My brother was dx with celiac by   biopsy only about 2 years ago (blood work negative). So last April I had my bloodwork done by my PCP and only the DGP IGA was mildly  elevated. I went gluten-free for 8 months (mostly, I am sure I was getting it in my system). I did a 6 week challenge for a biopsy which was perfectly normal. I went off gluten for a month, and back on for another month  before stopping.

My GI doc was nice but there were alarm bells: 1) he was absolutely amazed I had the DQ2 gene and possibly celiac but had no wheat allergy 2) He had no idea the old glidian tests got replaced by the DGP ones...he had never heard of them 3) he forgot to run any blood work until I was a month gluten-free again.

About 3 weeks into the challenge, I started getting a lot of chest pain and small burps all of the time. I had some bowel issues but mostly in the mornings when I would empty my system, TMI.  I finally went gluten-free again about 6 weeks ago.

I now have pain between my shoulder blades, still little burps, body aches, ear/neck pain on the right side, chest pain, heart flutters, and shortness of breath.

But the worst one is the feeling of near passing out. I will be just walking along, feeling like s$#& and trying hard to pretend to be freaking happy-go-lucky or attribute it to anxiety and suddenly I will feel weak, get a visual disturbance, like when you stand up too fast.

I have been to a cardiologist, ENT and my PCP probably thinks I am nuts now. I have had stress tests, pulmonary function tests (mild asthma), you name it. the problem is, before December, I was FREAKING FINE!

My Iron and b12 are normal as of 1 month ago (pre breathing issues). My Ferritin was 49 and dropped from 74 in 3 months, but still       normal. So I do not think it is vitamin related.

I am getting so frustrated. It feels like I cannot take a deep breath, the aches and pains are annoying, my ear MAY be TMJ                             (sudden onset apparently).

I am on Pepcid daily now just "in case" it is silent reflux. My GI did not think so. The ENT ran a tube down my throat and said it was "a little red" but was more focused on my ear/neck. I also "go" a lot less now so I thought my diaphragm was being crushed. I have to use a bit of Colace. Suddenly, I am on an inhaler for "mild asthma" that I probably have had since childhood.

Oh, and I even got a script for Xanax as needed so when I start to freak out over not feeling well I can be a bit calmer. I also thought maybe this is just some weird anxiety stuff, but the Xanax does not make the symptoms go away. It only chills me a bit.

Maybe it is something else, maybe gluten sensitivity, maybe they missed the start of atrophy on the biopsy. Who knows.

Has anyone else had any of this? If so, how long on the gluten-free diet after a challenge did your symptoms last? I figured 6 weeks

 

 

 

 

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

Celiac.com Sponsor (A8-M):


Naouel Newbie
Naouel
Posted

Hello, 

i have the same symptoms, I am on a gluten free diet. But sometimes I eat at my fiends like yesterday I just had a soup, and today I had chest pain and feeling extremely disy. 

Ijust got back home from the ER. I had the feeing I couldn't breath. ?

They told me check wil ENT specialist.  

etbtbfs Rookie
etbtbfs
Posted
5 hours ago, ironictruth said:

I guess this is a rant. And a simple: anyone else have this s$#&?

Ok, so I was gluten light for roughly 2 years, not really knowing what gluten was. I guess just carb light. My brother was dx with celiac by   biopsy only about 2 years ago (blood work negative). So last April I had my bloodwork done by my PCP and only the DGP IGA was mildly  elevated. I went gluten-free for 8 months (mostly, I am sure I was getting it in my system). I did a 6 week challenge for a biopsy which was perfectly normal. I went off gluten for a month, and back on for another month  before stopping.

My GI doc was nice but there were alarm bells: 1) he was absolutely amazed I had the DQ2 gene and possibly celiac but had no wheat allergy 2) He had no idea the old glidian tests got replaced by the DGP ones...he had never heard of them 3) he forgot to run any blood work until I was a month gluten-free again.

About 3 weeks into the challenge, I started getting a lot of chest pain and small burps all of the time. I had some bowel issues but mostly in the mornings when I would empty my system, TMI.  I finally went gluten-free again about 6 weeks ago.

I now have pain between my shoulder blades, still little burps, body aches, ear/neck pain on the right side, chest pain, heart flutters, and shortness of breath.

But the worst one is the feeling of near passing out. I will be just walking along, feeling like s$#& and trying hard to pretend to be freaking happy-go-lucky or attribute it to anxiety and suddenly I will feel weak, get a visual disturbance, like when you stand up too fast.

I have been to a cardiologist, ENT and my PCP probably thinks I am nuts now. I have had stress tests, pulmonary function tests (mild asthma), you name it. the problem is, before December, I was FREAKING FINE!

My Iron and b12 are normal as of 1 month ago (pre breathing issues). My Ferritin was 49 and dropped from 74 in 3 months, but still       normal. So I do not think it is vitamin related.

I am getting so frustrated. It feels like I cannot take a deep breath, the aches and pains are annoying, my ear MAY be TMJ                             (sudden onset apparently).

I am on Pepcid daily now just "in case" it is silent reflux. My GI did not think so. The ENT ran a tube down my throat and said it was "a little red" but was more focused on my ear/neck. I also "go" a lot less now so I thought my diaphragm was being crushed. I have to use a bit of Colace. Suddenly, I am on an inhaler for "mild asthma" that I probably have had since childhood.

Oh, and I even got a script for Xanax as needed so when I start to freak out over not feeling well I can be a bit calmer. I also thought maybe this is just some weird anxiety stuff, but the Xanax does not make the symptoms go away. It only chills me a bit.

Maybe it is something else, maybe gluten sensitivity, maybe they missed the start of atrophy on the biopsy. Who knows.

Has anyone else had any of this? If so, how long on the gluten-free diet after a challenge did your symptoms last? I figured 6 weeks

 

 

 

 

Have you had hormone levels analyzed?  Esp., your thyroid, by a doctor who does all of the relevant tests?

suelynn Newbie
suelynn
Posted

Oh my gosh..you are suffering. Find a good functional dr, that will take your whole self into the picture. I went gluten free about 4 years ago, but replaced all the reg. food with gluten free food..bread, cookies, cereal etc...then I went to preventative cardiologist, and she told me its the sugars that raise cholesterol, etc.. I also have thyroid disease. So I ditched pretty much everything that is processed food. no bread, pasta, cookies I eat meat, veggies, fruits, I feel better than I have in forever, lost 30 # dropped cholesterol 35 points. I still struggle with getting thyroid stable. I cringe when I hear people say they are going to try and cut back on gluten it is either all or nothing. I also got some good advice from the Wheat Belly dr., who is a cardiologist.he has patients that have given up gluten and have reversed heart disease, diabetes, arthritis and on and on. I believe our wheat we are altering today has been the problem of many illness that we are suffering today. good luck

Tricia7 Newbie
Tricia7
Posted

It may actually be your iron level. I feel awful when my ferritin falls under 50.  I feel good when it's closer to 100.  My last test the lab said "normal" ferritin was 15-150.  Mine was 36, which explains why I was feeing awful, even though the doc I saw said it was fine.  It's only 1/3 of what I need to feel good.  Normal isn't the same as optimal. 

I don't know about pepcid, but I do know a round of nexium is what led my anemia to be diagnosed.  While blocking stomach acid, it can also block iron absorption.  I don't know if pepcid is similar in this, but I suggest you look into it.

ironictruth Proficient
ironictruth
Posted
  • Author

Thank you. I did start Iron and b12 last week thinking the ferririn was taken a month ago and could be lower now. Not a huge dose, just what would be in a prenatal vitamin. 

I was also thinking of canning the pepcid as I am pretty sure the shortness of breath is not silent reflux and I do not actually suffer from heartburn. I may just scale back first. But I will certainly check out iron absorbtion and pepcid.

ironictruth Proficient
ironictruth
Posted
  • Author

And thank you for the other comments. Thyroid checked and good thankfully. 

And I am very much looking forward to seeing the integrative doc next month who is associated with a university hospital in my area!

The scary stuff has been ruled out. So I may just quit all the damn meds, stay on vitamins, and probiotics and wait to see if I feel better. 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

ironic,

i think you have a strong chance of developing celiac disease if you do not already have it.  I tested "mildly positive" on the DGP IGA test only but my biopsies did reveal severe damage.   I continue to fail the TTG tests Even on follow-up testing.  The small intestine is vast (size of tennis court) and it is easy to miss damaged areas.  Did they take more than four biopsies?  

ironictruth Proficient
ironictruth
Posted
  • Author

Yes, he took 6 or 8, I forget. 

I will say that going gluten-free has stopped my 4 trips to the bathroom in an hour most mornings. I have the opposite issue now. Though it always floats now and I read that could be malabsorption. It had never occurred to me that was connected until I started eating gluten again after going gluten-free the first time. I always thought it was the coffee. I assumed it was normal to totally purge your system in the mornings!

I have good days and bad now. Hoping this gets better soon!

notme Experienced
notme
Posted

try skipping the dairy for awhile.  if your villi are damaged, the ends of them is what makes the enzyme to digest dairy.  so, give them a little time to heal, then you can add it back.  i think i stayed off dairy for about 6 months.  i still have a little trouble with it, but i went undiagnosed for 25 years, so there was probably lots of damage :( good luck!  you might want to read the newbie 101 thread (locked topic in the coping section)  lots of practical info.  glad you're feeling better. :) 

ironictruth Proficient
ironictruth
Posted
  • Author

Thank you. I had no idea about dairy and enzymes. 

  • 3 weeks later...
ironictruth Proficient
ironictruth
Posted
  • Author
On 4/13/2016 at 10:20 PM, Tricia7 said:

It may actually be your iron level. I feel awful when my ferritin falls under 50.  I feel good when it's closer to 100.  My last test the lab said "normal" ferritin was 15-150.  Mine was 36, which explains why I was feeing awful, even though the doc I saw said it was fine.  It's only 1/3 of what I need to feel good.  Normal isn't the same as optimal. 

I don't know about pepcid, but I do know a round of nexium is what led my anemia to be diagnosed.  While blocking stomach acid, it can also block iron absorption.  I don't know if pepcid is similar in this, but I suggest you look into it.

Hello, how long did it take to get back up? I quit the pepcid and started iron but the ferritin dropped from 74 in December, to 49 in March and 33 a couple of weeks ago. 

Archived

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

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


  • Member Statistics

    • Total Members
      131,861
    • Most Online (within 30 mins)
      7,748
    Priscilla Buxton
    Newest Member
    Priscilla Buxton
    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

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.