Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Gluten Free Diet Helppp!


bmanltr

Recommended Posts

bmanltr Newbie

I was browsing on the internet trying to figure out what could be causing the symptoms I have been experiencing for the last few months and I stumbled across celiac disease. I seem to be having all the symptoms of the disease so I decided to experiment with a gluten free diet to see if it would help with my symptoms. I have been on the diet now for a week and have seen no improvement in my symptoms. I was wondering about how long it would take for your body to change and react to the gluten free diet? should I continue the diet longer to see if I feel better or should I have seen an improvement by now?


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



Celiac.com Sponsor (A8-M):



Mari Contributor

Do you have general swelling or is it in specific areas. When I started the gluten-free diet I had swolen painful knees and wrist. It took months for the swelling to go down and if I stress or injure my knees they still swell but not as much as before. Years ago I had episodes of swolen ankles and feet, sometimes very painful and I realized this was my reaction to cow's milk. Later I tested positive to cow's milk so it was an allergy. Recently I ate some gluten-free cookies which had butter so I had thick ankles for a week. Wrapping my ankles with ace bandages helps the swelling to go down rapidly. The swelling starts 2 to 3 days after I have eaten something with cow's milk protein so it is delayed. I would give the gluten-free diet at least a month tryout though it might take longer.

sb2178 Enthusiast

It varies. Some people few better in a couple of days, some people take 8 months or even a couple of years to truly become healthy again. You may also still be getting enough contamination or possibly straight gluten in a disguised form if you are eating processed foods. People also have problems with other foods, like milk or soy.

It's your call on whether to continue or not, but be aware that if you want formal medical testing, you can only have a positive result if you are eating gluten. I'd give it at least a couple of weeks.

Mack the Knife Explorer

It can take days, weeks or months. Everyone's different. Some people go through a period of feeling worse before they feel better on the gluten free diet. Others find that their recovery is complicated by other food intolerances that often occur or are revealed when one starts a gluten free diet. Some people have other medical conditions that can complicate things.

Be aware that once you start a gluten free diet, you cannot be positively diagnosed with Coeliac disease. Medical tests requires you to be eating gluten in order to work. It really is a good idea to be officially diagnosed before you go gluten free for good.

I have been gluten free for nearly six months and I still feel like crap. I've been doing the medical rounds of doctors and specialists to try and figure out why. Luckily I did get properly diagnosed by blood test and biopsy. This means that my specialist can now re-do the blood work and biopsy to make sure that I am responding to the gluten free diet. If I'm not, then it means I am still ingesting gluten somehow or - worse - I could have refractory coeliac disease. If the biopsy shows that my intestines are healing themselves then I can rule out gluten as the ongoing problem and look for other causes.

Also, the symptoms for Coeliac disease can be similar to a few other conditions like Irritable Bowel Syndrome (IBS), Fructose Malabsorption, lactose Intolerance, gluten intolerance, Crohn's Disease, small bowel/intestinal bacterial overgrowth, Microscopic Colitis, etc. You should really get checked for these (or get an official coeliac diagnosis) before embarking on a life-long gluten free diet. Also some of these diseases (like Crohn's disease) are serious and need proper treatment.

Ahorsesoul Enthusiast

Depends on how gluten free you really are in your life. Just a little can prevent healing. Think of it as a wound. If you keep rubbing the scab off it won't heal.

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. - DayaInTheSun replied to DayaInTheSun's topic in Coping with Celiac Disease
      5

      Being a burden to family/friends

    2. - Kiwifruit replied to Kiwifruit's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Years of testing - no real answers

    3. - trents replied to Gill.brittany8's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      9 Year Old test results - help interpret

    4. - Gill.brittany8 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      9 Year Old test results - help interpret

    5. - Mnofsinger replied to Mnofsinger's topic in Related Issues & Disorders
      7

      Food Tasting Salty


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,833
    • Most Online (within 30 mins)
      7,748

    mcsmommy
    Newest Member
    mcsmommy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DayaInTheSun
      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
    • Mnofsinger
      Those are great points and some follow up thoughts and ideas. I think you're both stating the same thing in two different ways, but I appreciate the "accuracy" of what you're getting to.   1. Are you both stating that the "too salty of a taste" could be triggered by a histamine reaction, and the flavor is coming from the electrolytes? If that is the case, wouldn't the individuals mouth always be salty during a "Glutening" situation, or are we saying that the person could get "use to the flavor" until introducing food or beverage and that could be enough to "stir the pot" and notice the salty flavor? 2. To push back on "#1": If that were true anyone with issues of histamine releasing foods/treatments would experience the same thing. Also, I did not experience a situation where most beverages were "too salty". Thoughts?
×
×
  • Create New...