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

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


lvpriest

Recommended Posts

lvpriest Apprentice

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

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

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

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

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

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

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

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

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

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

[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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    3. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,077
    • Most Online (within 30 mins)
      7,748

    Deb baker
    Newest Member
    Deb baker
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.