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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.