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

Recovery Question

Cornhusker

By Cornhusker
in Coping with Celiac Disease

Recommended Posts

Cornhusker Apprentice
Cornhusker
Posted

I've been on the diet for 4 weeks now. The first two weeks went really well. I'm confident I've removed all sources of gluten (haven't eaten out or done anything risky).

At the start of week 3 things began to go sour. Moderate to severe nausea. Difficulty eating enough. Stools have gone soft (not really D, not more than twice a day). I had started taking some Advil to treat some elbow tendinitis. My doc thought this might have been a mistake. Irritated my stomach. Gave me some Prevacid to calm things back down.

Since starting the Prevacid the long lasting nausea has gone away. I've been able to up my caloric intake (I'm pushing hard to gain weight) to my target levels. However a more low-grade of nausea has replaced the previous issues. After I eat (lasts about 1 hour) I experience nausea (but no vomitting, and it doesn't seem to build into anything else). My stools are still soft (they were strangely perfect for the first two weeks after months of D), but it's still not D. My appetite returns for the next snack/meal, but after eating...nausea again. I've stopped the Prevacid, hoping that's the cause. I've been on Bentyl, Advil, and Prevacid one after the other for the past 2 weeks. So there is a strong feeling on my part that the meds are keeping me from feeling my best.

I guess I'm looking for some recovery guidance. Is the nausea part of the healing process? What was the 1st couple months like for some of you veterans? I'm keeping a food log, more to track calories than anything else, but I'm not seeing any correlation between foods and effects. Nothing I'm eating is making me feel worse than I did before diagnosis, so maybe I just need to develop some patience (something I'm not good at).

Thanks.

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

Celiac.com Sponsor (A8-M):


BRUMI1968 Collaborator
BRUMI1968
Posted

I did not have nausea as part of my healing, though I have had what you describe in the past, before going off gluten.

The only thing that helped was valium, so I think in my case I was just getting really wound up about the mild nausea, and it would become more severe. I ended up losing a bunch of weight because I never wanted to eat. After a week or so on the valium, I went back to eating and all was well. HOWEVER.....

I wouldn't guess that was someone else's problem. (I have mental issues about stomach aches thanks to undiagnosed Celiac for 37 years tormenting my childhood.)

I might try, if I were you, PRE biotics. I use DigestGold. It has all the enzymes in it you can possibly imagine. That way, if your pancreas is unable to make enough digestive good stuff, this will help.

Peppermint tea should also help you -- just make sure it is gluten-free. Some herbal teas are not gluten free.

Then I don't know...is there anything you do at EVERY meal that is remotely suspect?

Guhlia Rising Star
Guhlia
Posted

Just a thought... Your body may be going through gluten withdrawal. When I went gluten free I got well very quickly, then got sick again, then got well again and stayed well. This may be the case for you too. I would try and go med free for a few days and see if that helps. Your body may just be screaming at you for cutting gluten (a very addictive substance) out of your diet.

Cornhusker Apprentice
Cornhusker
Posted
  • Author
Just a thought... Your body may be going through gluten withdrawal. When I went gluten free I got well very quickly, then got sick again, then got well again and stayed well. This may be the case for you too. I would try and go med free for a few days and see if that helps. Your body may just be screaming at you for cutting gluten (a very addictive substance) out of your diet.

When did the 'stayed well' phase start for you? I know everyone is different, but it's a question I like to ask.

I can't take credit for my diagnosis, my GI doc discovered it through biopsy before I had a chance to figure it out (really didn't think celiac fit, but in retrospect it makes perfect sense). But before diagnosis I was actively 'searching' for a solution. It's just really tough at this phase to accept that this is IT, and 'you will get better'. I'm having a hard time stopping my 'search'.

jesscarmel Enthusiast
jesscarmel
Posted

For the first few months on the diet (2 to3) i felt nauseus all the time and still get it once in a while. i was taking reglan to help it and still take if i need it. also lately when im nauseous i drink ginger aid tea by traditional medicinals. i also take culturelle a probiotic which seems to have helped.....

Jess

jerseyangel Proficient
jerseyangel
Posted

I've been gluten-free for a little over a year.

The first 3-4 months for me were kind of rough. I had nausea--not after every meal, but often enough. I guess it was related more to the D I was still having.

I was put on Prevacid, and only took it for 3 weeks before stopping. I had side effects from it--the worst of which was vertigo.

I would suggest that you stop the Advil and Prevacid for a week or so and see if it makes any difference. Also during that time, stick to plain, whole, natural foods like meat (if you eat it), veggies, fruits, pure water.

Montana Julie Newbie
Montana Julie
Posted

Good discussion - I am interested in hearing more.

Like the Husker Fan that started this conversation, I went gluten-free and did great for 3+ weeks and then got symptoms again - D and the works - but only at weird intervals that could maybe be attributed to contamination as I get my diet figured out.

Looking forward to that "getting well" and "staying well". Good to hear that this may just be a phase that we all will go through...

Montana Julie

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted
Good discussion - I am interested in hearing more.

Like the Husker Fan that started this conversation, I went gluten-free and did great for 3+ weeks and then got symptoms again - D and the works - but only at weird intervals that could maybe be attributed to contamination as I get my diet figured out.

Looking forward to that "getting well" and "staying well". Good to hear that this may just be a phase that we all will go through...

Montana Julie

Hi Julie--

Yes, we tend to go through a phase at the beginning that's kind of uneven. What with learning which foods and ingredients are safe, the inevitable mistakes and the healing process itself--it takes some of us a little time before we begin to feel any results.

Healing and recovery are different for everyone--keep at it, it will be worth it--I promise :D

Lollie Enthusiast
Lollie
Posted

Hi all! I wanted to through in my experience! I have been gluten free since January, about 8 months.... I have had mostly ups. I had the same kind of thing with the nausea, and still do sometimes. But for me, i feel like the up times are far more often then the bad times. I found out at about the one month stage that I couldn't eat soy..... Sometimes as the gluten is eleminated other intolerences come to the surface. I always eat rice when I feel sick. It is what I always fall back on. I also advice getting rid of the prevacid. I was on antiacid meds for 10 years before figureing out this gluten thing. I quit them cold turkey. If you take them for a long time and then stop they actually increase your acid production.....I figure I will deal with what ever comes my way as naturally as I can. I also drink tons of sparkling mineral water. I feel like it flushes out my system and helps anytime I feel sick again. I think that since the D has not come back you are probably on the right track and would encourage you to keep to it. I understand the feeling of still looking. I thought getting rid of gluten was just too easy, but I can honestly say it has changed my life in a way I wouldn't have hoped for!

Hang in there, it does get better!

Lollie

Aerin328 Apprentice
Aerin328
Posted

Cornhusker, I am in a very similar situation. I have been gluten-free for 1 month now and the symptoms continually roller coaster in and out. Nausea is only occasional for me, but the other symptoms really seem to come and go with a vengeance. The good news is the good times are starting now to get better, so I hope to reach a better/ more reliable state over the next few months. From what I read time and again on this forum is that it takes a long TIME for sustainable healing to take place. For now eat simple yummy healthy foods and have patience - you will heal in time, and all on this site will be here for you! :) (I may be preaching to myself on the patience part- gosh it's frustrating. lol ;) )

jknnej Collaborator
jknnej
Posted

I had so much nausea I lost 20 lbs. right away. But it gets better. Now I rarely have it although it does creep up sometimes. I also found out I had acid reflux a few months after going gluten free and once I started on Nexium the nausea disappeared. I tried going off Nexium and it returned....my dr. says 25% of reflux patients do NOT present with heartburn; they get nausea instead.

If you do have reflux and you tried Prevacid remember, as my dr. told me, that ALL of the reflux meds can have nausea as a side effect....it just so happens that Nexium is the one for me personally that doesn't cause it. I tried Prevacid and Prilosec OTC first. Prevacid was OK but Prilosec made me terribly nauseated, even worse than I already was.

Even if it is not reflux, it will get better. You are going through gluten withdrawls. My dr. told me that I never should have gone OFF gluten so fast....I should have weaned off instead of stopping all at once. I was dizzy, nauseated, etc. for a while because of this.

It will get better!!!

angel-jd1 Community Regular
angel-jd1
Posted
I am NOT a celiac. I have Celiac Disease, but it is not who I am.

I noticed that on your replies today. I LOVE that you have put that up. I cringe each time that I read on the board somebody saying "my little celiac" or She's/He's a celiac......blah!! :blink:

In college I took courses for special education. We were always taught to use person first language. Meaning.....put the person infront of the disability. Instead of saying the dislexic girl you would say a girl with dislexia. Etc.

Anyways...........thank you for putting that out there for people to read. I think that sometimes we forget!!

-Jessica :rolleyes:

loraleena Contributor
loraleena
Posted

I was nauseous for at least a month or so after starting. It subsided after a while. Prevacid is really bad for you. It can cause more harm than good. Also advil destroyed my gut. I can't touch the stuff now. Try drinking ginger tea by traditional medicinals. I also took deglycerized licorice for a while. I helps sooth the gut. Make sure it is deglycerized licorice. Good luck

Archived

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

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


  • Member Statistics

    • Total Members
      131,856
    • Most Online (within 30 mins)
      7,748
    Sonya Haskin
    Newest Member
    Sonya Haskin
    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

    • 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    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
×
×
  • 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.