Jump to content

  • 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):

Losing The Will...what Am I Doing Wrong?!

lvpriest

By lvpriest
in Coping with Celiac Disease

Recommended Posts

lvpriest Apprentice
lvpriest
Posted

Hi everyone

So I've been trying to go gluten free for about 3, 4 weeks now, and for the most part, I I think I'm doing ok. I am also going dairy free as that literally gives me a 3 second warning and I am running to the bathroom!

Anyway, despite my tryings and being careful, my stomach is not any better. I have just spent a half hour on the toilet and my stomach bloated and gurgled all afternoon, when I did not knowingly ingest gluten.

I just don't know what to do. I have tried to pinpoint what is making my stomach upset, but still it is all over the place. I can't go on like this!

I've also been getting weird aching pains in my lower back and towards my chest, and although the arm tingling has cleared up it came back today. My scalp and hairline is flakey, although not as bad as it was - DH back?

Has anyone got any advice on what I should do?! How long will it take til I feel better?

Thanks so much in advance!

Lauren

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

What are you eating? Are you eating whole unprocessed foods? If not then you should consider doing so to help speed your healing. Are you being careful about CC, gotten a new dedicated toaster, new strainer for pastas, new cutting boards and replaced wooden utensils? Are you baking gluten foods for others? Flour can hang out in the air for up to a day and CC us. Have you checked all supplements and drugs, OTC and script for gluten? Call the maker to check on those don't rely on your doctor to know.

You are doing the right thing to delete dairy for now. The same areas damaged by gluten produce the enzymes we need to digest dairy so that alone could be causing continued problems. You may be able to add it back in after you heal. Do not replace your milk with Rice Dream as that is not safe.

Stay out of restaurants for now, wait until you have fully healed. Many do try to cook gluten free for us and some succeed but CC risk is high.

It can take some time to heal and some time to get used to the diet. Do also check your toiletries and makeup for gluten and if you have a significant other do make sure if they have eaten or drank anything with gluten that they brush their teeth well before you kiss.

I hope you are feeling better soon. We do seem to have ups and downs at first as it takes time to heal. Hang in there.

sb2178 Enthusiast
sb2178
Posted

also:



  • pet food/litter
  • babies/toddlers get stuff everywhere (I have to obsessively wash hands while babysitting and NOT touch my face)
  • avoid eating out/others houses for a few more weeks
  • obsessive label reading-- I keep finding things that are sort of surprising

If it doesn't get better in a couple more weeks, you could try doing an elimination diet to see if soy/corn/nuts/eggs etc bother you. But, it does just take time.

curiousgirl Contributor
curiousgirl
Posted

also:



  • pet food/litter
  • babies/toddlers get stuff everywhere (I have to obsessively wash hands while babysitting and NOT touch my face)
  • avoid eating out/others houses for a few more weeks
  • obsessive label reading-- I keep finding things that are sort of surprising

If it doesn't get better in a couple more weeks, you could try doing an elimination diet to see if soy/corn/nuts/eggs etc bother you. But, it does just take time.

Dear Ravenwoodglass...I just wanted to say how much I (and all of us) appreciate the time and effort you put into posting and replying to posts on this site. You seem very grounded and patient. So, thank you!

curiousgirl Contributor
curiousgirl
Posted

also:



  • pet food/litter
  • babies/toddlers get stuff everywhere (I have to obsessively wash hands while babysitting and NOT touch my face)
  • avoid eating out/others houses for a few more weeks
  • obsessive label reading-- I keep finding things that are sort of surprising

If it doesn't get better in a couple more weeks, you could try doing an elimination diet to see if soy/corn/nuts/eggs etc bother you. But, it does just take time.

I finally broke down and bought some shampoo, some facial cleanser and hand soap. I'm desparate! And frustrated! I bought some Seemark (sp) gluten free rice thins-cheddar at the health food store yesterday. After eating the 15 crackers per serving, I looked at the ingredients. There is WHEY in them! Didn't I read somewhere that whey is some sort of wheat??????? I feel icky today...again!!!1

mushroom Proficient
mushroom
Posted

I finally broke down and bought some shampoo, some facial cleanser and hand soap. I'm desparate! And frustrated! I bought some Seemark (sp) gluten free rice thins-cheddar at the health food store yesterday. After eating the 15 crackers per serving, I looked at the ingredients. There is WHEY in them! Didn't I read somewhere that whey is some sort of wheat??????? I feel icky today...again!!!1

No, relax, whey comes from dairy (unless you're dairy intolerant) :huh:

Streetlegal Apprentice
Streetlegal
Posted

Diagnosed in December, it took me until May to experience any turn around, and, though I am no longer rushing to the toilet, I am still frequently not as solid as I would like to me. That said, after six months I do feel so much better.

Be patient. If you are like me, you may get worse before you get better.

Incidentally, after four months of not getting better I had a colonoscopy, and found have microscopic colitis. It is not uncommon for celiacs to also have this condition. There ain't much I can do about it, but at least I know why it took me so long to feel better . . .

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

Celiac.com Sponsor (A8-M):


sandsurfgirl Collaborator
sandsurfgirl
Posted

It can take awhile for your gut to heal. Use the search function and look at old threads about withdrawals to see what others went through.

It was 6 months before I really felt good. I felt better all the time but I still had many symptoms.

Your body will go wacky wonky during the withdrwals and healing phase. I read an article somewhere on here about how gluten has an opiate affect on the celiac's body and it's a true withdrawal process.

At one month I was still bedridden much of the time and extremely ill. Better than i was a month before but still sick.

Eat whole foods for awhile. Dont go nuts with gluten free products at first. YOu have damage that needs to be healed. Give your body the raw materials it needs. Fruits, veggies, meats, eggs, brown rice, simple ingredient things like rice pasta.

Many if not most have trouble with dairy and soy at first. Soy still bothers me but I can eat dairy in moderation.

For months I couldn't eat anything complicated. Nothing with more than 3 ingredients. It's temporary and necessary for healing.

Check your shampoos, soaps, etc. That stuff find its way into your mouth when it runs down your face in the shower etc. I resisted that so much but I did NOT have marked improvement until I changed my products.

ravenwoodglass Mentor
ravenwoodglass
Posted

Dear Ravenwoodglass...I just wanted to say how much I (and all of us) appreciate the time and effort you put into posting and replying to posts on this site. You seem very grounded and patient. So, thank you!

Thanks for the kind words. Patience came with being so sick for so long. Being here makes it seem like all the suffering had a purpose and helps me see that I was not at all alone all those years. I just wish it hadn't taken me 2 years after diagnosis to find everyone here as it would have made the first year so much easier.

ravenwoodglass Mentor
ravenwoodglass
Posted

I finally broke down and bought some shampoo, some facial cleanser and hand soap. I'm desparate! And frustrated! I bought some Seemark (sp) gluten free rice thins-cheddar at the health food store yesterday. After eating the 15 crackers per serving, I looked at the ingredients. There is WHEY in them! Didn't I read somewhere that whey is some sort of wheat??????? I feel icky today...again!!!1

You may want to drop the dairy for a bit and see if it helps. You might also call the maker and see if they make wheat products there also to see if there was a chance of CC.

precious831 Contributor
precious831
Posted 

[code]

I agree with the answers, just stick to natural(preferably organic) food for now, no going out to eat. I think the dairy is a no right? So make sure no dairy. I'm not able to tolerate any, not even lactose(which is a milk sugar). I get very ill. Stick to water and safe tea for now, if you must drink tea. No soda and try to stay away fr processed foods as much as you can, including sweets. Stay away from food colorings and preservatives/additives. Do you have any multivitamins? Check the ingredients on that too. Check all the things you use everyday.

Whey is a milk protein btw.

Btw do you have some type of colitis? When you eat, do you think it passes through you undigested?

Cheer up, and I hope it gets better but it will take time, trust me. It took a while for you to get this way, it's not gonna take a month to get better.

Just be patient hon. I've been gluten-free for 9 months and I still have gut issues every now and then. I think I have leaky-gut because I have other food sensitivities, and the symptoms are GI.

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. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      11

      Celiac flare years after diagnosis

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down...
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      11

      Celiac flare years after diagnosis

      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest ...
    3. Peace lily
      - Peace lily commented on Scott Adams's article in Latest Research
      2

      New Study Reveals How the Immune System Learns Which Foods Are Safe to Eat

      Hi everyone well I don’t understand totally,I look for gluten-free only. I seem to be super sensitive. I had a problem the other day don’t know why it happen . I’m the only that handles my food . My husband has pancreatitis he’s fine with me cooking gluten-free I’ve tried doing both it doesn’t work for me strictly gluten-free kitchen. But he can actu...
    4. nancydrewandtheceliacclue
      - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      11

      Celiac flare years after diagnosis

      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Dermatitis Herpetiformis
      4

      Skin issues

      Thankyou I did find out the Infectious disease is the route to go rather than dermatologist. I did reach out to two major hospitals and currently waiting on approval for one of them in Infectious Diseases to call me. I also did have implants ( I didn't know and sense not properly in my medical. Neither did surgeon)in 2006 and there was a leak 2023 during...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,061
    • Most Online (within 30 mins)
      10,442
    Francisco1007
    Newest Member
    Francisco1007
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
    • Jmartes71
      Skin issues

      By Jmartes71 · Posted

      Thankyou I did find out the Infectious disease is the route to go rather than dermatologist. I did reach out to two major hospitals and currently waiting on approval for one of them in Infectious Diseases to call me. I also did have implants ( I didn't know and sense not properly in my medical. Neither did surgeon)in 2006 and there was a leak 2023 during the same time I was dealing with covid, digestive issues, eyes and skin.Considering I " should  be fine" not consuming gluten/wheat, taking vitamins for sibo and STILL feeling terrible.It has to be parasites. I also take individual eye drops prescribed, could there be an issue there? Anyways my pcp thinks I need therapy because again they don't acknowledge my digestive issues because in my records it shows im fine, hintz the reason I had to go back to bay area hospital:(  I thought skin issues maybe sibo related but I feel and have seen and seriously trying not to think about it because it's disgusting. 
    • Aretaeus Cappadocia
      Zaalouk moroccan eggplant salad

      By Aretaeus Cappadocia · Posted

      oops. I didn't see that before posting or I would have at least referenced it. The two recipes are pretty similar, but I think the newer one is a little simpler/faster. Next time though I will search more before posting.
×
×
  • Create New...