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 Free And Still Having Symptoms


KCampbell

Recommended Posts

KCampbell Newbie

My diagnosis of celiac was recently confirmed. I've been following a gluten free diet for about 1-2 months, although before that i was gluten free except for oats for about 4 months. Since going completely gluten free i felt better for a while but have started having symptoms again. It is the strangest thing because I have checked all the labels and know what to look for and don't cheat and dont think i've been injesting any gluten. but I get really really bloated and have diarrea and generally feel not well. And it is very random. I also have some lower abdominal pain all across the bottom of my abdomen that feels almost like a gnawing pain sometimes.

I've heard that soem people have a lactose or soya intolerance, so in the last week i've eliminated milk. I'm still eating yogourt. About a year ago which is when I started having problems, I was diagnosed with microscopic colitis - they gave me antibiotics and it cleared up.

Any thoughts? Suggestions? I'm not sure either if I should go back to the GI specialist (who wasn't very helpful in asnwering my questions) or to my family doctor for other tests. I saw a nutritionist in a group session last week and she suggested trying the dairy thing although she said the yogourt wouldn't matter.

Please help!


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



Celiac.com Sponsor (A8-M):



MDRB Explorer

Yeah, a lot of people discover other intolerances after going gluten free. You could keep a food/symptoms diary for a while to try and pin point what is bothering your system.

You mentioned that you have checked all your food, what about any medication or supplements you are taking? Also, do you live alone? If not you may want to check out any cross contamination. Do you eat out? This could be a source of gluten.

I have been gluten free since march this year, and I still find myself having symptoms despite being 100% positive that I am not eating gluten. I have found that sugar upsets my system for some reason, and that if I eat out too much I get gluten symptoms.

If you can't figure out why you are getting sick, you should go see your doctor as you may have an additional issue.

Good Luck

AliB Enthusiast

I have noticed this a lot that some either get better for a while then go backwards or they don't really improve much at all on gluten-free, which can indicate problems with other foods such as dairy.

I recognised very quickly after going gluten-free and DF that my problem was not just gluten but carbs per se. My body just doesn't cope with them properly (hence the diabetes!). Often the gluten foods are replaced by other equally (if not more so) high-carb, high-sugar foods that the body also starts to have problems with.

Like you I have recently realised that oats are a problem for me and have been low-level 'glutening' me all the way through, so have now dropped them (whether it is the oats or CC with them I haven't a clue, but best avoided anyway), but I still need to be very careful with all starches and carbohydrate-based foods.

I went on to the Specific Carbohydrate Diet which limits carb consumption to just that in fruit, veg and nuts and added some extra protein for my Metabolic type (I am a fast-oxidiser) and that way my body seems to be healing quite well. It is a slow progress, but at least it is progress

Guest dolly1665

:rolleyes:

Hi, I am new to this forum but when I was reading this I had to reply,

Gluten Free people ... We all need to stop using things that have CORN SYRUP in it...

And I found any corn upsets my tummy....

This may be a problem for a lot of others...

Any meat needs to be antibiotic free....

These are just a few things I have found, to help me.

Hope this will help some one else.

Dolly1665

imhungry Rookie

I've been at this Gluten free, wheat free and Dairy free diet for about 10 months now, and I STILL have things creep in as I expand my diet. Gluten is hidden in EVERYTHING, and many things Inever expected it to be. Start writing down what you are eating, look for patterns, check the websites of the companies the food is from and look at their FAQ's or e-mail them about being gluten free. The food labelling laws are not on our side, i.e. potato chips can be made with flour sprinkled on them to keep them from sticking together while processing and because the flour is not an "ingredient" it does not have to be listed.... Spice is code for "probably has flour in it"...

Any specific questions you have, shoot. We might have already asked the companies.

AliB Enthusiast

Over the last 2 weeks I have been 'glutened' twice. This time I was able to recognise it for what it was - before, I just had odd reactions that I assumed were to other foods or because my gut was still not healed and finding some foods hard to cope with.

After the latest 'proper' reactions though I suspect that it may be that my immune system is finally kicking back in and any glutening is now far more apparent. It took three and a half months of gluten-free and Dairy-free for mine to start working. Other people may get to that stage sooner or later than me.

I realised it was the oats and the 'odd reactions were to those or CC within them, and have dropped them but am far more careful now I know more about it, to avoid anything that may be suspect.

We ate at IKEA this evening and although assured the food was gluten-free I am still waiting to see if anything happens! I did indulge in a hot choc with dairy and have experienced some bloating and gas but it's not too bad - I might just have got away with that!

MDRB Explorer
I've been at this Gluten free, wheat free and Dairy free diet for about 10 months now, and I STILL have things creep in as I expand my diet. Gluten is hidden in EVERYTHING, and many things Inever expected it to be. Start writing down what you are eating, look for patterns, check the websites of the companies the food is from and look at their FAQ's or e-mail them about being gluten free. The food labelling laws are not on our side, i.e. potato chips can be made with flour sprinkled on them to keep them from sticking together while processing and because the flour is not an "ingredient" it does not have to be listed.... Spice is code for "probably has flour in it"...

Any specific questions you have, shoot. We might have already asked the companies.

I found that anything in an ingredients list that I can't pronounce probably has gluten in it. Any kind of preservatives, thickening agents, flavors, starches... or really anything that you don't recognize or that you don't know what it is derived from... all of these things should be checked before eating.


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



Celiac.com Sponsor (A8-M):



mommida Enthusiast

Have you checked all of your hygeine products i.e. tooth paste, lip gloss/ chapstick, shampoo? Not that anyone intentionally ingests shampoo, but it does happen.

I was feeling sick and went through the products I was using, there was barley in the deodorant. Don't ask my how that cross-contamination happens!!? By the way the closest thing I can think of is laundry causing cross contamination.

gfpaperdoll Rookie

IMO yogurt does matter, it is dairy. Do not eat it & see if you get better.

AndrewNYC Explorer

Try using an elemental formula like Tolerex for a week and see how you feel on it. Don't eat or drink anything except water. Once you're symptoms subside, reintroduce other foods

My diagnosis of celiac was recently confirmed. I've been following a gluten free diet for about 1-2 months, although before that i was gluten free except for oats for about 4 months. Since going completely gluten free i felt better for a while but have started having symptoms again. It is the strangest thing because I have checked all the labels and know what to look for and don't cheat and dont think i've been injesting any gluten. but I get really really bloated and have diarrea and generally feel not well. And it is very random. I also have some lower abdominal pain all across the bottom of my abdomen that feels almost like a gnawing pain sometimes.

I've heard that soem people have a lactose or soya intolerance, so in the last week i've eliminated milk. I'm still eating yogourt. About a year ago which is when I started having problems, I was diagnosed with microscopic colitis - they gave me antibiotics and it cleared up.

Any thoughts? Suggestions? I'm not sure either if I should go back to the GI specialist (who wasn't very helpful in asnwering my questions) or to my family doctor for other tests. I saw a nutritionist in a group session last week and she suggested trying the dairy thing although she said the yogourt wouldn't matter.

Please help!

linuxprincess Rookie

You said you had eliminated the dairy, but you were still eating yogurt, which is dairy.

Here's why so many GFers are not able to handle milk products: Caesin.

This has an extremely similar chemical structure to gluten so when its in your body, you treat it as gluten and have symptoms. They might be the same as gluten symptoms or a little different, but you'll know.

"Milk Fat" is usually okay on a label because this is normally ghee which has no milk solids which is where the caesin is. ( Ghee is clarified butter; boiled butter essentially, and tasty )

I would try going 100% dairy free for say a month to give your body time to adjust and get whatever is left out of your system and then see how you do. Still having symptoms after that I'd eliminate something else or go have an allergy test done if you are able to.

Hope this helps, and good luck!

MDRB Explorer
You said you had eliminated the dairy, but you were still eating yogurt, which is dairy.

Here's why so many GFers are not able to handle milk products: Caesin.

This has an extremely similar chemical structure to gluten so when its in your body, you treat it as gluten and have symptoms. They might be the same as gluten symptoms or a little different, but you'll know.

"Milk Fat" is usually okay on a label because this is normally ghee which has no milk solids which is where the caesin is. ( Ghee is clarified butter; boiled butter essentially, and tasty )

I would try going 100% dairy free for say a month to give your body time to adjust and get whatever is left out of your system and then see how you do. Still having symptoms after that I'd eliminate something else or go have an allergy test done if you are able to.

Hope this helps, and good luck!

Hi,

I just wanted to add to this and say that some people do not have a caesin problem but a lactose problem. This often happens to celiac patient because the villi produces the enzyme that helps you digest lactose (in dairy) and when it is damaged from gluten exposure you no longer produce that enzyme properly.

If it is a lactose problem not a caesin problem then you could take something like 'lactaid' and still enjoy your dairy foods, or alternatively stick to low lactose dairy including hard cheeses such as parmesan and cheddar.

Hope this helps :)

lurven71 Newbie

Hello,

I was wondering if I could have your thoughts on something. I was diagnosed two years ago after getting to the point of nearly dying. I have maintained a gluten-free diet since then, but have continued to have strange symptoms, including new symptoms I didn't have when I was eating gluten. The worst part has been continued stomach, skin, mood swings, terrible PMS, fungal infections, horrendous cravings for chocolate, alcohol and sweet things, and panic problems. I seem to feel totally out of control most the time. They are very random. I have had a gluten-check up and my panels all come back at zero level of anti-bodies, and I am sure it's not gluten.

What I started to notice was that when I was trying to lose weight (and cutting back on sweets) all of my symptoms would go down to almost nothing. After doing a lot of reading, I started to consider that maybe I have a problem with candida (yeast overgrowth). For the last two weeks I have been avoiding sugars (including fruit), alcohol, too much starch, and taking pro-biotics, and holy cow, I am almost back to normal!!!!

I am in the UK (where I dont have a choice of what doctor I see) and my doctor has diagnosed me with panic disorder and tried to get me to take anti-depressents. I told him that I thought he was terrible wrong, and that I was sure it was food related. I am starting to think I might be right.

Anyone else has similiar experiences? I noticed many people on here have the same problems I do. Could it be from sytemic yeast overgrowth???

purple Community Regular

Somewhere on here I read that it could be an allergy to corn and its in everything, keep your eyes and ears open just incase.

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. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

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

      KAN-101 Treatment for Coeliac Disease

    4. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748

    Travis25
    Newest Member
    Travis25
    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

    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.