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

Gluten/Dairy Free But Still Feeling Sick?


treeoflife06

Recommended Posts

treeoflife06 Newbie

Hi guys!

I have been reading this message board for the past month, but never posting but its now my turn to post I guess.

I am a 27 year old female who woke up one day and just had diarrhea for almost a month straight 7-8 times a day. It was just water. I went to a GI doctor. My blood work came back completely normal and not even a chance of Celiac's. So he told me he thinks I am gluten intolerant. I stopped eating gluten and dairy (which i was allergic to) and its been since February 2nd. 
 

Having diarrhea every day stopped completely once i went gluten & dairy free..but still have been feeling off since then. I had gas really bad for a while that smelt absolutely disgusting and i couldnt help it. My doctor told me to get on a probiotic for that. That has kind of cleared, but every  day my stomach just feels funky. Like almost like you have to poop. And it rumbles, and I still have gas a LOT, just not as much. And I poop quite often but its not water anymore. Also, I have always drank wine, and now even when I have one or two glasses, the next day I poop a ton.

 

Can anyone tell me if this happened to them? Is my stomach just regulating itself? Is this normal? I asked my GI doctor again and he said "if you really want to do an endoscopy or colonoscopy we can, but its unlikely theres anything else wrong" I never had blood in my poop or anything like that. Please give me some advice here. I am feeling completely defeated. It is super frustrating, I just want my life back. I can't go out to eat with my boyfriend cause its always so complicated & now I cant go out and get a drink either? I have to worry about if I have to poop or not or if my stomach will hurt.

 

Side note: I have a naturopathic doctor appointment in two weeks which I am excited about..ive heard good things..anyone have experience with this also? SOrry for the long post, i just need to talk to people who get it! Thank you in advance. 


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master

What do you typically eat?

This could be anything really, from a bad strain of bacteria in your gut, a food intolerance, parasite, allergy, ulcers, or a deficiency.

Start off with a food journal and write down everything your eat. Try removing one food at a time for a week and noting your you feel and any changes. You might find you have a intolerance to something, or a allergy could be causing inflammation in the intestines. 

What is your sugar/carb intake, if your on a gluten-free diet and eating a bunch of processed foods the issue could be your having too much starches, sugars, and carbs and your gut bacteria are just having a field day. In which case adjusting your ratios adding more fiber and fats will help.

It could be the wine as some people react to the sulfates and nitrates in it same wit the vinegar.

I would really suggest dropping all of your current staples and trying a whole foods only diet of simple stewed/baked/grilled meats, eggs. veggies, sweet potatoes, nuts, and small amounts of fruit. See how you feel on that kind of diet. From there do the elimination diet and try removing some and adding something for a week at a time keeping it simple.

Heck you might even have a gluten containg spice or glutened cookware and be getting yourself just a tad with gluten.

PS welcome to the fourm say you have been here for awhile but just going to post the basics introduction links anyway.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

 

treeoflife06 Newbie

I scan everything i eat. So I know I am not eating gluten.

 

I have been good for like five to six days and then today I have dirreah again. It's super weird. The doctor told me IBS...but he doesnt seem concerned. I am wondering if I should switch doctors to someone who's going to be more apt to trying to find out what is wrong. My blood work is all normal and he doesnt seem to want to give me an endoscopy or colonoscopy cause he said it's "possible but probably not" something else.

Ennis-TX Grand Master
10 minutes ago, treeoflife06 said:

I scan everything i eat. So I know I am not eating gluten.

 

I have been good for like five to six days and then today I have dirreah again. It's super weird. The doctor told me IBS...but he doesnt seem concerned. I am wondering if I should switch doctors to someone who's going to be more apt to trying to find out what is wrong. My blood work is all normal and he doesnt seem to want to give me an endoscopy or colonoscopy cause he said it's "possible but probably not" something else.

Might push for the scope just to be sure what it is. Especially if covered by insurance. Most of these autoimmune diseases have a particular diet and foods to avoid that help you to live a more normal life. Just got to nail down what you have.

Your still a bit early into the gluten-free diet also, can takes weeks if not months for your system to settle. Give it more time, and keep on being vigilant with ingredients, and safe prep in a gluten-free environment. Note gluten CC is a real pain first getting into the diet. You will make mistakes with old contaminated cookware, spices, condiments, crumbs in drawers/containers/toaster/oven/counter, getting a untrusted brand etc. Best to stick to whole foods only first few weeks of the diet to jump start your healing and make it simpler.

Start the food journal to see if you can nail down some culprits and get some data on what is causing the issues. You might be able to categorize a certain kind of food (Night shades, legumes, grains)  or a food in particular that is doing it.    Say it could be stuff like sugar carbs, soy, meats, or some random intolarenace you developed. It is very common to get them with this disease, and they can cause all kind of different symptoms.     

cyclinglady Grand Master

Too bad , your lame-sounding doctor advised you to go gluten free without testing you for celiac disease.  Consider getting a new GI doctor who knows about celiac disease and get tested.  Actually any MD can test you.  The catch is you need to be on a gluten diet.  

Open Original Shared Link

IBS really means "I Be Stumped."  You might not have celiac disease, but at least you can rule it out.  

Archived

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

  • 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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    3. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

    4. - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

    5. - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748

    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.