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

Needing A Little Support


Nan2N

Recommended Posts

Nan2N Explorer

Hi Everyone

I've been having a hard time lately and was hoping someone might be able to give me some advice. I've been gluten free for over 2 months now and seem to be getting sicker and sicker. I am being VERY careful about CC and eat very plain. My dietician wants me to eat tons of food every day to get my weight up, but I'm still nauseous all the time and the last thing I want to do is eat. It seems like every meal bothers me. I get a lot of stomach pain that goes through to my back and makes me miserable. My biopsy didn't show any damage, although it could have been missed but from what I'm told my intestines weren't that bad. The only thing I was low in was vitamin D which I have been supplementing. I've checked every med/supplement with the manufacturer and double check everything else by calling companies. But like I said, I eat mostly plain foods. I thought I'd feel okay by now, not worse, and have no idea what to do. My doctors are really no help. I never had any gut problems before being diagnosed and now it's relentless. I can't help but wonder if there's something else going on. I'm so sick of being sick and am really depressed about all the restrictions and food I can't eat. I just wish I could go to the store and buy what I want to bulk up. But even worse is the stomach pain, which I'm not even sure is a symptom of Celiac. I know soy and nightshades could be the culprit. But I don't have either of those on a daily basis. Any ideas?

Thanks tons!


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



Celiac.com Sponsor (A8-M):



curlyfries Contributor
I get a lot of stomach pain that goes through to my back and makes me miserable.

Don't know if this is your problem, but for me, the back pain was a symptom of gallstones.

MELINE Enthusiast
Hi Everyone

I've been having a hard time lately and was hoping someone might be able to give me some advice. I've been gluten free for over 2 months now and seem to be getting sicker and sicker. I am being VERY careful about CC and eat very plain. My dietician wants me to eat tons of food every day to get my weight up, but I'm still nauseous all the time and the last thing I want to do is eat. It seems like every meal bothers me. I get a lot of stomach pain that goes through to my back and makes me miserable. My biopsy didn't show any damage, although it could have been missed but from what I'm told my intestines weren't that bad. The only thing I was low in was vitamin D which I have been supplementing. I've checked every med/supplement with the manufacturer and double check everything else by calling companies. But like I said, I eat mostly plain foods. I thought I'd feel okay by now, not worse, and have no idea what to do. My doctors are really no help. I never had any gut problems before being diagnosed and now it's relentless. I can't help but wonder if there's something else going on. I'm so sick of being sick and am really depressed about all the restrictions and food I can't eat. I just wish I could go to the store and buy what I want to bulk up. But even worse is the stomach pain, which I'm not even sure is a symptom of Celiac. I know soy and nightshades could be the culprit. But I don't have either of those on a daily basis. Any ideas?

Thanks tons!

Hello

I am sorry you feel like this. I hope you will soon start feeling better.

Well just some ideas. For me nausea was because of IBS, candida overgrowth and other food intolerances.

IBS is something your doc can diagnose from your biopsy. Candida needs blood and/or stool tests. Other food intolerances need a specific test (sometimes a blood test / it depends on the doctor)

Something that helped me a lot was to stop eating raw vegetables and fruits. I realised that raw food was giving me abdominal pain and most of the times nausea. For nausea you can drink hot camomile just to feel better. it was very helpful for me.

But that was for me. .....Just check it out.

JNBunnie1 Community Regular

You said you were eating a very plain diet, but does this include dairy? A lot of people are lactose intolerant for a time after starting the gluten free diet, and some get over it and some remain intolerant. If you're not really able to skip th edairy for now for whatever reason, try getting some lactase pills and take one every time you eat dairy, see if that helps. I actually become lactose intolerant again for a time every time I get glutened, its feels very like what you're describing. The raw food suggestion is a good one as well, try sticking to steamed veggies and stewed fruits.

BRUMI1968 Collaborator

Folks have been giving good advice. I just wanted to say that my digestive systems prefers raw food. I am much less likely to have stomach problems (or intestinal problems) when I eat raw. That said, I don't mean lots of nuts or cabbagy foods.

Often these comfort foods like rice are not easy to digest. I don't eat any grains and since then, my stomach has felt better. Not so much nausea, which for me is an intermittent problem I have not quite solved.

For me nausea can be from:

eggs

too much fat

nervous/stress

I have not yet mastered why I sometimes have bouts of nausea - they do seem to show up around my period - not so much so that it's an easy connection - but I often wonder if I'm hormonally odd when I get the nausea.

Small Bowel Bacterial Overgrowth is a possibility. I have found when I eat too much sugar and not enough probiotics, or get out of balance sugar wise, I often get nausea. Another thing to check out.

I once had nausea so bad and for so long, I went on Xanax. That really fixed it, but only because it dulls your nervous system. I did it because I was losing too much weight. In my case, at least part of it was caused by stress (relationship dissolving.)

Peppermint tea helps. Peppermint also comes in pills.

Ursa Major Collaborator

I have the opposite problem from Bully4You. I cannot handle too many raw foods without problems. In fact, I was unable to eat ANYTHING raw for the first six months of being on the gluten-free diet, or I would get terrible stomach aches and diarrhea. I had to cook all vegetables and fruits to a mushy consistency or it would be a problem.

I still can't eat a lot of raw foods. A small salad or at the most five carrot sticks is all I can handle. One pear or apple for fruit at a time.

Plus, dairy or soy (or both) could also be a huge problem at this point.

Raw foods are hard to digest, and may not be a good idea at the beginning, when your intestines are still inflamed. The same goes for the officially gluten-free foods.

confusedks Enthusiast

I can't offer too much advise as far as nausea, but I do have something that might help. I deal with severe nausea a lot of the time and the only thing that helps take the edge off (so I can stop sweating, and swallowing to prevent vomiting) is Zofran ODT. It dissolves on your tongue and it has been a great help for me. It is a prescription medication so your Dr will have to write a script.

I have tried EVERY tea you can imagine, every supplement, every acupressure point/bands...and they all made me worse or just didn't do anything. I have also tried most anti-nausea meds, even just regular Zofran and none have worked the way Zofran ODT does.

Also, you might want to look at other causes of nausea. Were you officially diagnosed with Celiac or did you self diagnose? Did you have en endoscopy/colonoscopy to rule other things out?


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



Celiac.com Sponsor (A8-M):



Crystalkd Contributor

I've been gluten-free for about a year now. I agree with others. I would have your doc check for other allergies. I'm also corn and soy sensitive and if I eat too much it makes me almost as sick as gluten.

Fiddle-Faddle Community Regular

The stomach pain going through to the back is exactly how I described my severe acid reflux. In my case, it did have a lot to do with the gluten, but there were other issues involved as well (a hiatal hernia, acidic diet, etc).

I think what everyone else is suggesting is probably more likely to be one of your issues, but just in case, I thought I'd post my experience.

I do hate to suggest drugs, as they mask symptoms rather than dealing with the root cause, but I wonder if an acid blocker would help? And if it does, then I wonder if you might be dealing with an h-pylori infection, which is a very common cause of such issues? Or perhaps an ulcer (on top of everything else)?

Archived

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

  • 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. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      3

      New issue

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      My journey is it gluten or fiber?

    3. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

    4. - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,102
    • Most Online (within 30 mins)
      7,748

    Dawn74
    Newest Member
    Dawn74
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      Nope its just me because they can eat wheat and when we use same pans I found out last year thanks to you guys and the autoimmune website im learning,we are not to share though clean, same with sponge. I just wish doctors understood. I am with new gi and new pcp but im falling apart because blood work is fabulous.Im so ANGERY.I have reached out to my local representative, in Stanislaus but its just weekly stuff.Im going to need to physical go down there.Any recommendations on what to say and do because this is absolutely ridiculous. If I didn't have my husband though we are really hurting with one income, I would absolutely be one of the homeless population. Thats alarming begging to be heard about a diagnosis that was given as an adult and dealing with this, medical needs to stick to patients regardless of switching insurance or doctor. 
    • knitty kitty
      If you haven't noticed a difference yet, bump up your Thiamax.  Add in another Thiamax with breakfast and lunch.  Increase the NeuroMag as well.  You can add in another Benfotiamine, too.   Thiamine is safe and nontoxic even in high doses.  Taking more is fine. I had to bump mine up several times when first starting.  It's a matter of finding what works for you.  Everyone is different.   Stick with it.  Some of the health improvements are very subtle and gradual.   Keep going!  You're doing great!
    • knitty kitty
      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance nor a dairy allergy.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  When the villi grow back, the villi can resume making lactase again.  I react to casein. Keep in mind that part of the autoimmune response to gluten and casein is the release of histamine.  Histamine causes inflammation, but it is also powerful excitory neurotransmitter, causing heightened mental alertness.  Histamine release is what causes us to wake up in the morning.  Unfortunately, excessive histamine can cause insomnia.  Our bodies can make histamine, but foods we eat contain different amounts of histamine, too.  Our bodies can clear a certain amount of histamine, but if overwhelmed, chronic high histamine levels can keep inflammation going and cause other health problems.   I got very weary of playing Sherlock Holmes trying to deduce what I was reacting to this week, so I adopted the low histamine version of the Autoimmune Protocol diet, a Paleo diet designed by a doctor with Celiac, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, has been most helpful.   The low histamine AIP diet cuts out lots of foods that are known to be irritating to the digestive tract.  After a few weeks, when my system was calmer and healing, I could try adding other foods to my diet.  It was much easier starting with safe foods, adding one thing at a time, and checking for reactions than trying to figure out what I was reacting to with so many variables.  I learned to recognize when I had consumed too much histamine from different combinations of foods.  Everyone is different and can tolerate different amounts of histamine in their food.  B Vitamins help us make enzymes that break down histamine.  Vitamin D helps regulate and calm the immune system.  Supplementing with Thiamine helps prevent mast cells from releasing histamine.  Keeping a food-mood-poo'd journal helps identify problematic foods.   I hope you will consider trying the AIP diet.
    • trents
      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    • hjayne19
      Hi @knitty kitty  Just revisiting this to get some help. I found after understanding the extent of my anxiety, my sleep got a little better. Flash forward to a few weeks later I have had a few bad sleeps in a row and I feel desperate for a good nights sleep. I understand worrying about it won’t help but one thing I had tied things too was dairy. Initially when I went gluten free I felt great for the first few weeks then started having some stomach pain. So thought maybe I was lactose intolerant. I started eating lactose free Greek yogurt and that did help take the cramping away I guess. Over the last few months I haven’t eaten it every single day and I went a few weeks without it. The last few nights I did have a small amount with breakfast and noticed that was the only new thing I’ve really added to my diet. I had seen a few other posts about this. Is it possible to still react to lactose free? Would this potentially be a dairy allergy? Or something else. 
×
×
  • 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.