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 Intolerance And Celiac Symptoms


jasonD2

Recommended Posts

jasonD2 Experienced

are the symptoms for gluten intolerance the same as the symptoms for celiac?


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



Celiac.com Sponsor (A8-M):



purple Community Regular

My daughter was diagnosed gluten intolerant 4 months ago. From everything I have studied the symptoms are the same depending on the person. Some milder/worse than others. But if you keep eating gluten, I believe you will have some severe symptoms and even be allergic to other foods which narrows your choices. Just ask Rachel if she posts. If you stop all gluten then your body can heal. Its most important to only eat healthy and non- gluten foods...forever. Once allergic to gluten...always allergic to gluten. Be very thankful that you know now and not after 45 or 50 years of misery like others on here. My daughter is almost 20 and we knew something was wrong about 3 years ago, not knowing what it was nor anything about gluten. Now I look back and see signs when she was little. She had "growing pains", screaming and running thru the house during the night, lots of tiny aches and pains daily. Take care of yourself and watch for "hidden gluten".

jasonD2 Experienced

a few people have posted here saying that they went gluten-free for a few years and were then able to reintroduce it back into their diets. i guess everyone is different

Rachel--24 Collaborator
But if you keep eating gluten, I believe you will have some severe symptoms and even be allergic to other foods which narrows your choices. Just ask Rachel if she posts. If you stop all gluten then your body can heal. Its most important to only eat healthy and non- gluten foods...forever. Once allergic to gluten...always allergic to gluten.

Actually my own thoughts/opinions/experiences are much different from this.

Its not necessarily true that if you stop eating gluten your body heals....it depends on what is damaging your body. If a person is gluten intolerant as a result of some other undiagnosed condition...then removing gluten is not going to resolve everything.

Also, allergy and intolerance are two different things entirely. I'm only speaking of intolerance...not allergy. Its not true that once intolerant to gluten....always intolerant to gluten. Some people develop leaky gut because of other health conditions and they develop food intolerances...gluten being one of the major offenders...but also dairy, soy, eggs, etc.

People who have this problem and are properly diagnosed and treated can then heal and the food intolerances will usually go away. So lots of people have been able to reintroduce gluten without having any problems once they treated underlying issues. Also, if we are lacking in enzyme function we can be having problems digesting gluten and many people resolve this with the use of specific enzymes.

It really isnt so black and white...where if you react to gluten now then you'll always react to gluten. It depends on *why* you're reacting to gluten. If there is some other problem going on.....healing depends on that problem being identified and treated. Sometimes its not the gluten which is the main problem....many times it can be secondary to some other issue.

Now if a person has Celiac then yes...the diet is for life.

For some people who's damage is a direct result of gluten intolerance (as in Celiac Disease) then yes...it is most important to stay off of gluten forever.

For other people who might have developed the intolerance because of a leaky gut condition (meaning the gluten intolerance is secondary)...then it is most important to find out what is wrong in the gut and to correct that problem so that the gut can heal.

I was gluten free for 3 years and this did not allow for healing to take place.....nor did it prevent new intolerances/problems from developing. Removing gluten took some of the stress off of my immune system (no doubt it was an added burden) however, it cant be the "cure" if its not the main reason that the gut is being damaged. So if gluten is removed but healing doesnt take place.....and intolerances continue to appear...then obviously something else is causing damage and preventing healing from taking place.

In this case its most important to identify the cause....because leaky gut allows toxins to enter the system and ultimately this can lead to disease....especially autoimmune disease.

In my case there are things other than gluten which are damaging my gut....eliminating gluten was not going to "fix" the other issues. Yes, I had antibodies showing up in Enterolab testing (all Celiac tests were negative including genes) but that dosent necessarily mean gluten itself is causing the damage. Antibodies are present when the immune system is reacting to these foods.....but what Enterolab cant tell us is *why* the immune system is reacting to gluten. The reason can be different in every case where the cause is not related to Celiac Disease.

I have been off the gluten-free diet for almost 7 months now. I have not gotten any worse with adding gluten back in and I take specific enzymes to break it down. I dont go crazy with it but I do have some gluten more days than not. I probably wouldnt be attempting this if I were not under the care of some really good dr.'s and having some good idea as to what things are causing me the most problems....and right now gluten isnt one of my primary issues. There are LOTS of foods which are more damaging to me than gluten.

So each person is different....its important to listen to your body. Its not normal to have to restrict so many foods....so if removing gluten isnt the whole answer then it just means that the rest hasnt been identified yet. There is ALWAYS a reason behind the symptoms....if you look hard enough (and dont give up) the answer can be found. :)

jasonD2 Experienced

Hi Rachel- thank you for your detailed insight. I had a full GI workup and the only flags were the following:

1. +2 for candida which means there was light growth

2. moderate amount of pathogens/bacterial overgrowth detected in addition to abundant flora (from probiotics probably)

3. various food allergies (ginger, dairy, soy, rye, egg, mustard all being the highest)

4. elevated alpha anti-chymotrypsin indicating colonic inflammation

5. elevated gliadin antibody (stool)

6. slightly elevated lactulose/mannitol - marginal intestinal permeability

everything else was normal. at this point i was 2 weeks off gluten and was starting a candida regimen as well as cutting out many of the allergenic foods. this was 8 months ago

I am now having the genetic test for celiac and will also be doing the gluten challenge in a few weeks.

Truth is i dont know if it was the gluten that caused the problems or something else which in turn made me sensitive to gluten. all i know is it all started after i had a traumatic digestive event which caused me to become completely lactose intolerant...constipation and food intolerances followed and now i'm here

any additional input would be appreciated

thanks

neesee Apprentice
are the symptoms for gluten intolerance the same as the symptoms for celiac?

I don't know about gluten intolerance but this is what celiac did to me.

I weighed 78 lbs

My cholesterol was 96. 20 yrs later it's around 150

I had megaloblastic anemia

I had diarrhea day and night, never a break, didn't matter if I had eaten or not

I had cracks at the corners of my mouth, I still have a scar on the right side

I got to the point I couldn't eat. It hurt so bad. I felt too full

My heart felt like it was stopping. It terrified me.

Malnutrition

I smelled awful, stinky gas all the time , so embarrasing!

I was hospitalized for about 2 weeks. When I went home I was taking 50,000 Ius of Aqua-sol A, 50,000 Ius of Drisdol, 1 mg of folic acid 3 times a day, zantac twice a day and xanax to help me cope and relax and try to eat.

I had shots of B12 for a while. The iron hurt my stomach. I couldn't take it.

It took more that a year for me to start to gain weight and believe that I was going to live. I feel like I lost me. I'm no longer outgoing and socializing is agonoy for me.

Oh and i forgot to say I'm 4' 10.5 " tall and I wear size 2.5 shoes. I guess I didn't grow either.

neesee

Rachel--24 Collaborator
Hi Rachel- thank you for your detailed insight. I had a full GI workup and the only flags were the following:

1. +2 for candida which means there was light growth

2. moderate amount of pathogens/bacterial overgrowth detected in addition to abundant flora (from probiotics probably)

3. various food allergies (ginger, dairy, soy, rye, egg, mustard all being the highest)

4. elevated alpha anti-chymotrypsin indicating colonic inflammation

5. elevated gliadin antibody (stool)

6. slightly elevated lactulose/mannitol - marginal intestinal permeability

everything else was normal. at this point i was 2 weeks off gluten and was starting a candida regimen as well as cutting out many of the allergenic foods. this was 8 months ago

I am now having the genetic test for celiac and will also be doing the gluten challenge in a few weeks.

Truth is i dont know if it was the gluten that caused the problems or something else which in turn made me sensitive to gluten. all i know is it all started after i had a traumatic digestive event which caused me to become completely lactose intolerant...constipation and food intolerances followed and now i'm here

any additional input would be appreciated

thanks

As far as the +2 candida....I think that stool tests are very unreliable as far as determining how significant the yeast problem may be.

Blood antibody testing is considered to be more reliable. Also, I think the diet will also influence what shows up in tests. While I was restricting sugar and carbs (on the anticandida diet) my stool test did not show any yeast overgrowth. Later on with these things back in my diet (in moderation) there was "light overgrowth".

About a year later (and with ice cream being a constant in my diet) I had bloodwork done and my antibodies for intestinal yeast were some of the highest my practitioner had ever seen (and she had predicted they would be that high).

Six months later (and no ice cream) the antibodies had gone down more than 50%. They were still very high....but there was a significant decrease from the first antibody test.

Generally, the yeast will come back when you feed it...but its only because other factors are making that possible. So while yeast can cause leaky gut....in treating yeast alone people usually dont recover. The yeast just keeps coming back unless the problem that is allowing it to happen is identified and treated as well.

Usually yeast isnt the only pathogen in the gut causing problems. So if a person has dysbiosis...yeast can just be one part of the problem. Parasites are a major problem and from what I can tell you didnt have any parasite testing done?? From what I understand well over 90% of the population has parasites. Among the people with GI complaints its more like 100%.

They are difficult to test for though...there are hundreds of species and we are not capable of testing for all of them. Also, they are not always present in random stool tests.

One of my previous doctors had told me that parasites and/or other gut infections were found in every patient with gluten intolerance who did not recover from the diet alone. He said that every patient he tested came back positive for some type of infection....but parasites were most common.

In my own testing no parasites showed up but yeast and toxins produced by bad bacteria (clostridium) were found at that time.

Right now I'm having more thorough testing done....not just for the infections but other metabolic issues to try to get a more clear picture of any imbalances I may have. One big one that has already been identified is copper/zinc ratio. My copper is way high and out of balance with the zinc....which can lead to alot of health problems. High copper is also associated with yeast so it'll be important to try to get the copper down and in balance with the zinc.

Alot of things can become unbalanced and this can also keep the cycle going....so that even if you're treating yeast (or whatever else) the problems just keep coming back because the body is still not in balance. Thats why when chronic yeast is an issue its most important to find out what is causing that problem in the first place.

Are there any certain foods that you notice significant problems with??

My allergy tests were totally clean. My sensitivity/intolerance testing (for over 100 foods) was looking pretty clean as well. It definately wasnt in-line with the amount of foods I was reacting to (nearly everything). I only had a couple foods show up (banana and alfalfa)....and then approx. 75% of the spices tested were positive. Everything that came up positive was only +1....I had nothing higher than that. It didnt make any sense to me.

That was over 3 years ago and since then I learned that I'm having problems breaking down and eliminating phenols and other food chemicals. So these chemicals were accumulating and causing damage. This was causing a great deal of toxicity and inflammation....as well as contributing greatly to my malabsorption problem that never resolved while gluten-free.

Some of the organisms in the gut can also produce phenols...including yeast and clostridium bacteria. This may be why I'm experiencing increased toxicity from additional intake of these chemicals....it may be that my system (and the pathway involved in detoxing phenols) is already overwhelmed because of the gut infections. I dont know this yet but thats why I'm still having various tests done.

I posted alot of info on a couple of the tests I'm doing for GI stuff in the "Why so many intolerances" thread (leaky gut forum)....so if you're interested you can check it out.

Since you were initiating an anti-candida diet at the time that you were tested....the problem could be more significant than the 2+ that was indicated. Have you ever had any antifungal treatments and did you feel some improvement after starting the anticandida diet?

I had remarkable improvement when I first started the diet...but I was real strict....no processed foods, no sugar (in any form), no starches, etc. It was a very basic organic diet and my worst symptoms improved dramatically....but it became very obvious as the weeks went on that there was still something seriously wrong. I had one problem under control....but that wasnt the end of it.

You might want to consider additional tests focusing on the GI stuff....maybe the tests I mentioned in the other thread, maybe some parasite testing, maybe even Lyme testing at some point. The more testing you get done the better your chances are for determining the cause for ongoing symptoms.

Sometimes it can take awhile to narrow down the possibilities with testing but its a much better process than constantly trying to guess at everything...which is what I was doing before I got some doctors who were able to help me. The "not knowing" part was the worst thing for me.....maybe even more frusterating than the symptoms themselves.

Hopefully you will get some clear answers about the gluten part of it and hopefully the rest will also be figured out so that you can get past all of this. :)


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



Celiac.com Sponsor (A8-M):



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 Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

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

      KAN-101 Treatment for Coeliac Disease

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

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,156
    • Most Online (within 30 mins)
      7,748

    Shrub
    Newest Member
    Shrub
    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

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • 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.
×
×
  • 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.