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

Still Sick, Any Suggestions?


fun-size

Recommended Posts

fun-size Newbie

I was diagnosed a month ago and have been eating gluten-free since. At first it seemed like my stomach symptoms cleared up but now I will have several days a week where I'm still sick. Is this just because I'm still healing, I'm getting gluten contamination some how, or are there other foods that don't sit well? I just want to know that I can make it through a day without having a back-up plan for if I get sick. Especially if there are other foods that don't sit well I'd like to avoid them. Do I have a wrong diagnosis or should I be tested for other stomach problems or food allergies? I would appreciate any help or suggestions.

Thanks!


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



Celiac.com Sponsor (A8-M):



Lisa Mentor
I was diagnosed a month ago and have been eating gluten-free since. At first it seemed like my stomach symptoms cleared up but now I will have several days a week where I'm still sick. Is this just because I'm still healing, I'm getting gluten contamination some how, or are there other foods that don't sit well? I just want to know that I can make it through a day without having a back-up plan for if I get sick. Especially if there are other foods that don't sit well I'd like to avoid them. Do I have a wrong diagnosis or should I be tested for other stomach problems or food allergies? I would appreciate any help or suggestions.

Thanks!

Most of the answers to your questions are YES. Your are healing, you might be getting some cross contamination's somewhere and dairy could be bothering you.

I may take several weeks to several months for you to heal. Old toasters, scratched pots and pans, cutting boards, can be objects for cross contamination. Have you checked your vitamins, meds, shampoo, lotion for gluten.

Be diligent and it takes time.

fun-size Newbie
Most of the answers to your questions are YES. Your are healing, you might be getting some cross contamination's somewhere and dairy could be bothering you.

I may take several weeks to several months for you to heal. Old toasters, scratched pots and pans, cutting boards, can be objects for cross contamination. Have you checked your vitamins, meds, shampoo, lotion for gluten.

Be diligent and it takes time.

I didn't realize that shampoo and lotion could even have gluten! Thanks for the suggestion I'll go check right now.

I guess I was just hoping that once I had a diagnosis I would be magically cured with my new diet. I'm a 23 year old 4th grade teacher so with all my activities and a busy teacher schedule I don't have the time to run to the bathroom whenever my stomach decided to be sick. I guess I'm just having a melt down day, I need to remember my patience.

Thanks so much for listening and your support. I just needed someone who understands.

Lisa Mentor

As a 4th grade teacher, you should be aware of some school supplies have gluten. Play Doh is not gluten free. Google on this site a list of "gluten free school supplies", you should come up with a listing.

And another thing to be careful is with the children's lunches. Watch out for their crumbs. Everything that gets in or near your mouth must be checked out from shampoo to soy sauce, natural flavors to spices in labeling. The key to your success if learning to read labels.

Shampoo, although not everyone is as concerned, can get into your mouth while shampooing. Dove and Suave are gluten free.

The diet is the "magic cure", but it does take time and the learning curve is steep. The best suggestion that I can give you is to read, read and read from this site. If you have questions, always feel free to ask...and no dumb questions here.

Welcome to the club. ;)

mamabear Explorer

Great reply from Momma Goose. My suggestion for your back up plan is to ask your physician for an antispasmodic med like Levsin,Symax (trade name drugs are more expensive, but you are better able to vet out a gluten free status from the manufacturer). They will not stop the bowel motility, but will slow it down and decrease the cramping. The need to take it will taper off as you are successful with the diet.

And if you take any medications, check with the manufacturers for them being gluten free.

MDRB Explorer
I was diagnosed a month ago and have been eating gluten-free since. At first it seemed like my stomach symptoms cleared up but now I will have several days a week where I'm still sick. Is this just because I'm still healing, I'm getting gluten contamination some how, or are there other foods that don't sit well? I just want to know that I can make it through a day without having a back-up plan for if I get sick. Especially if there are other foods that don't sit well I'd like to avoid them. Do I have a wrong diagnosis or should I be tested for other stomach problems or food allergies? I would appreciate any help or suggestions.

Thanks!

Hi,

I am having a similar problem. I have been gluten-free for a couple of months. Most of my stomach symptoms have gone but I still feel a lot of fatigue. I also get a lot of stomach symptoms from dairy. I find that hard cheeses are ok but anything with a lot of lactose like milk, sour cream or soft cheeses make me sick.

I would suggest you keep a food/symptoms diary to help you pin point what is causing the stomach upsets.

fun-size Newbie

Thanks for all the fabulous suggestions. It makes me feel so much better talking to people who have been through this. Sometimes I feel so alone with a lot of sympathy from friends and family but they can't answer any questions because they're no sick. Hopefully with more patience, time, label reading and food journaling I will make it through. You are all the best! I wish I could send you all a bouquets of flowers for your time and suggestions.


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



Celiac.com Sponsor (A8-M):



Lombardi25 Apprentice
I was diagnosed a month ago and have been eating gluten-free since. At first it seemed like my stomach symptoms cleared up but now I will have several days a week where I'm still sick. Is this just because I'm still healing, I'm getting gluten contamination some how, or are there other foods that don't sit well? I just want to know that I can make it through a day without having a back-up plan for if I get sick. Especially if there are other foods that don't sit well I'd like to avoid them. Do I have a wrong diagnosis or should I be tested for other stomach problems or food allergies? I would appreciate any help or suggestions.

Thanks!

I know how you feel also. I was just diagnosed about three weeks ago with Celiacs. I am 28 and have had stomach problems as far back as I remember. I finally went to see a gastrologist last month and within three weeks I had a lactose test and an endoscopy/colonoscopy scheduled and done. The lactose test was negative but during the endoscopy they took a biopsy and saw that I had no villi and hence diagnosed me with Celiacs.

I'm a very finicky eater and all I've ate my whole life was breads and pastas and pizza and burgers/hotdogs with buns etc. pretty much everything you can't eat with Celiacs so it has been a huge change for me and I have been trying new things finally and staying gluten free (almost a month now).

But with that said I have had at least one really bad stomach ache for a day or two once a week since starting the gluten free diet and I have been feeling so run down and fatigued to the point where I have worked from home a couple days because I spend all day at work just trying to get by.

I am hoping that all of this will start improving over time as my villi heal/grow back and all that but it is really depressing because my doctor didn't really give me a whole lot of info after diagnosing me and I couldn't get in with a nutritionist until the end of the month (May). So I have pretty much spent half of my time every day trolling this forum and reading about Celiacs everywhere I can myself.

It has been alot of trial and error but I feel like I have done a pretty good job. I've bought my own pots/pans, strainer etc. and actually tried the Outback with their gluten free menu last week for the first time but like I said I completley know where you are coming from becuase still getting sick really bad once or twice a week is not what I had envisioned by this point of being gluten free. I keep questioning myself of when I may have gotten glutened but in the end I am pretty certain that I'm just not nearly ready to digest alot of the foods I am probably eating.

I also have some of the anti-spasmatic medicine that my doctor prescribed me before I was diagnosed but that has not seemed to do much for me when I get really sick. I have the regular kind once a day kind and the bilingual kind for spur of the moment stomach aches.

So anyways, I just wanted to respond to you, tell my story and say hi to the forum, I really have found this to be my new safe haven and source of information, it is so great to read everyone's stories and I'm happy to finally share mine. :-) Hope you start feeling better too fun_size, I hope that in 3-6 months from now I can look back on what my life used to be like and just be so happy about where I am.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Francis M replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

    2. - Scott Adams replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

    3. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      3

      Stomach burning and neuropathy

    4. - Scott Adams replied to Me,Sue's topic in Related Issues & Disorders
      2

      Nausea

    5. - Francis M replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,852
    • Most Online (within 30 mins)
      7,748

    LG2
    Newest Member
    LG2
    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

    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
    • Scott Adams
      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Francis M
      Absolutely my point with Kerrigan, the owner. She stood to secure many years of faithful patronage by simply inviting us in for a pastry or lunch. Or by simply producing another $50 e-card based on trust. We would have been highly satisfied. We are limited to a few restaurants in the area, and that would have been one. It was very disappointing, esp to my wife, to realize we can't patronize the place anymore.
×
×
  • 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.