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

Not Getting Better Please Help

jamesM11

Recommended Posts

jamesM11 Newbie
jamesM11
Posted

i have been eating gluten free for 9 months now and i am very strict , i have not got better and i am literately going insane , i dont mean to sound like im whinning but i cant take it anymore. i have pain in my stomach everyday. has anyone else experienced this

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome James. Some of us have other intolerances. For me stomach pain is linked to soy and is releived with Pepto Bismal liquid. Might not be the case for you though.

Have you spoken with the doctor who diagnosed you about your continued problems? There may be other things in addition to celiac that need to be ruled out. Are you taking all the precautions we need to take with our food? We have to be very careful about cross contamination and make sure we are not doing things like sharing toasters, butters, condiments etc with gluten eaters. We need to replace strainers, wooden utensils, toaster and need to be very careful to make sure that if we eat out we are eating from a gluten free menu at a place that knows to take all the precautions we need to take.

dilettantesteph Collaborator
dilettantesteph
Posted

What do you mean by very strict? Are you eating a lot of processed foods? You could try a produce and unprocessed meat only diet. Are you still eating dairy? You may have lactose intolerance, many do especially at the beginning.

I didn't get better eating gluten free initially either. I tried eating only processed foods made in dedicated facilities and that helped quite a bit. I did better still when I eliminated all of that and went to produce and meat only. I was able to add back dairy. Now I need to be even more careful than that about cc. I am a super sensitive celiac, sensitive to very low levels of gluten.

I keep careful track of what I eat and what symptoms I get with a food/symptom journal. That way I have found foods which I can eat which don't give me any symptoms.

Have you been to the doctor? There are other conditions which you could have and your doctor could advise you about that.

cavernio Enthusiast
cavernio
Posted

Dairy is definitely a thing to stop if you haven't already, seeing as you have pain in your stomach and that's a standard symptom of lactose intolerance. If that doesn't remedy it within a week or so, I would go to a doctor. There's a lot more than just celiac that causes stomach pain.

nvsmom Community Regular
nvsmom
Posted

If you are certain that you've eliminated cc, you could look to other causes for your pain. Crohns, colitis, and hashimoto's can cause stomach issues, as can more rare AI disorders. It could be something to check into.

Best wishes. :( I hope you feel better soon.

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. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    2. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    3. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    4. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    5. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,859
    • Most Online (within 30 mins)
      7,748
    Santa Don
    Newest Member
    Santa Don
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.