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

I don't know what's wrong with me?


healthiskey

Recommended Posts

healthiskey Rookie

I honestly don't know what's going on with me. I've had health issues going on around 7 years now. I am 21 years old and it has ruined my life so far. My dad is celiac so i thought it was autoimmune i could have. I got the blood test done for that and it came back negative. I've been doing intermittent fasting for the last two weeks and it seems to have been helping but earlier i hit rock bottom. I hadn't eaten anything from around 8pm last night and i broke the fast at around 1:30pm with a big bowl of brown rice and carrot and ever since then i've been feeling really bad. I got fatigued, irritable, sinus issues, face got puffy, eyes puffy, redness on skin. I don't know why this happens to me it's happened many times before too after i eat stuff. Anyways here's a list of my symptoms:

My symptoms aren't all there at the same time, they fluctuate.

My symptom list is as follows:

stingy eyes

puffy eyes

dark circles under eyes

anxiety

heart palpitations

bloating

belly fat (slight) (i'm skinny for my height but i have excess fat in certain places)

breast fat (slight)

Sometimes when my health gets really bad my face starts getting rosacea-like symptoms

puffy face

sinus issues

brain fog

bad short term memory

paleness (especially in hands)

cold hands and feet

loss of collagen in skin

oily skin/hair

bloodshot eyes

flaky skin between eyebrows

fatigue

irritability

lack of sex drive

insomnia

i think my vision is worse when my health is down too, i have bad eyesight anyways so it's hard to tell

flatulence

blackheads/whiteheads on nose

stiff joints


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



Celiac.com Sponsor (A8-M):



beach4ever Newbie

Hello! Have you ever heard of oxalates? Many of your symptoms sound exactly like what I was suffering from. Most people, including health care providers, do not know anything about oxalates and their affect on all body systems. Hyperoxaluria is mostly researched in the renal system for kidney stones, but it can have many more debilitating effects. I went through a LOT of testing, including rheumatologists, neurologists, etc. They wanted to just pass it off as fibromyalgia and chronic fatigue. I knew better, as I am a nurse. There is a Yahoo group that I joined to learn so much more. It is terribly confusing, but it is an amazing transformation once you get everything under control.

 

beach4ever Newbie

P.S. Brown rice and carrots are medium/high in oxalates. I do not eat either anymore. I am also gluten free. My daughter has celiac disease, but my results have always come back negative, as well as almost every other test the doctors have run. Long, long story. I could go on for hours!

cyclinglady Grand Master
On 4/20/2018 at 9:10 AM, healthiskey said:

I honestly don't know what's going on with me. I've had health issues going on around 7 years now. I am 21 years old and it has ruined my life so far. My dad is celiac so i thought it was autoimmune i could have. I got the blood test done for that and it came back negative. I've been doing intermittent fasting for the last two weeks and it seems to have been helping but earlier i hit rock bottom. I hadn't eaten anything from around 8pm last night and i broke the fast at around 1:30pm with a big bowl of brown rice and carrot and ever since then i've been feeling really bad. I got fatigued, irritable, sinus issues, face got puffy, eyes puffy, redness on skin. I don't know why this happens to me it's happened many times before too after i eat stuff. Anyways here's a list of my symptoms:

My symptoms aren't all there at the same time, they fluctuate.

My symptom list is as follows:

stingy eyes

puffy eyes

dark circles under eyes

anxiety

heart palpitations

bloating

belly fat (slight) (i'm skinny for my height but i have excess fat in certain places)

breast fat (slight)

Sometimes when my health gets really bad my face starts getting rosacea-like symptoms

puffy face

sinus issues

brain fog

bad short term memory

paleness (especially in hands)

cold hands and feet

loss of collagen in skin

oily skin/hair

bloodshot eyes

flaky skin between eyebrows

fatigue

irritability

lack of sex drive

insomnia

i think my vision is worse when my health is down too, i have bad eyesight anyways so it's hard to tell

flatulence

blackheads/whiteheads on nose

stiff joints

Were you on a full gluten diet?  Exactly which blood tests were given?  I ask because some health providers chose to only give a screening TTG blood tests (it is pretty good and it is cheaper than running a full panel).   This TTG test catches most celiacs, but not all like me.  ?. So, unless you had the full panel (TTG, EMA, DGP — both IgA and IgG versions), you can not rule out celiac disease.  Oh, add the fact that some celiacs are seronegative (test negative to all the blood tests).  

Beach4Ever has some good advice worth investigating, but determine the root cause could benefit you in the long run.

 

KnitSkank Newbie

I agree with the oxalate comment - brown rice has a lot and can cause many health problems. However, to me it sounds like you might be reacting to the rice. 

I have been gluten free for 24 years. I know how to do it. I was recently diagnosed with yet another auto immune disease and I had not been feeling well - brain fog, tired, etc., so I started to do some reading on my new disease to see if it was causing me to feel down. This is what I have discovered.

Corn gluten can cause intestinal damage just like wheat gluten:  

Open Original Shared Link

Rice, millet, and other grains can also cause problems with those who have compromised gastrointestinal systems, as well as many other common foods. 

I finally found the website of Sarah Ballantyne, PhD - she owns the website thepaliomom.com and I have started what’s called the AIP Diet (auto immune protocol diet). I’ve been on the diet now since 4/12/18 and I began to notice a difference on day four, but a major change on day five. All kinds of energy - the biggest difference was my mind - much clarity!

I will be staying on the diet for one month, then adding and testing out foods slowly - one by one. 

First, I would suggest you stop the fasting - you are sick and your body needs nutrition! Second, consider going on the AIP Diet (its pretty much what I’d call an elimination diet - all commonly known trigger foods removed, so the body can heal).

Here is a link to Sarah’s website on AIP (she is on it herself, as she too has Celiac): Open Original Shared Link

A little more advice: give yourself a break... I know you look at other people your age and think ‘They’ve accomplished so much and I haven’t done anything!’ Well, their food isn’t  causing them to be sick for years, either! I’ve been there - many of us have. Get this figured out now, so you can start living your life on your terms.

Blessings

 

 

Ennis-TX Grand Master
On 4/20/2018 at 11:10 AM, healthiskey said:

I honestly don't know what's going on with me. I've had health issues going on around 7 years now. I am 21 years old and it has ruined my life so far. My dad is celiac so i thought it was autoimmune i could have. I got the blood test done for that and it came back negative. I've been doing intermittent fasting for the last two weeks and it seems to have been helping but earlier i hit rock bottom. I hadn't eaten anything from around 8pm last night and i broke the fast at around 1:30pm with a big bowl of brown rice and carrot and ever since then i've been feeling really bad. I got fatigued, irritable, sinus issues, face got puffy, eyes puffy, redness on skin. I don't know why this happens to me it's happened many times before too after i eat stuff. Anyways here's a list of my symptoms:

My symptoms aren't all there at the same time, they fluctuate.

My symptom list is as follows:

stingy eyes

puffy eyes

dark circles under eyes

anxiety

heart palpitations

bloating

belly fat (slight) (i'm skinny for my height but i have excess fat in certain places)

breast fat (slight)

Sometimes when my health gets really bad my face starts getting rosacea-like symptoms

puffy face

sinus issues

brain fog

bad short term memory

paleness (especially in hands)

cold hands and feet

loss of collagen in skin

oily skin/hair

bloodshot eyes

flaky skin between eyebrows

fatigue

irritability

lack of sex drive

insomnia

i think my vision is worse when my health is down too, i have bad eyesight anyways so it's hard to tell

flatulence

blackheads/whiteheads on nose

stiff joints

Going on everyone else suggestion and you mention intermittent fasting. Try a ketogenic diet wit the intermittent fasting, or at least a paleo diet with low carbs, one other thing you might consider is you were fasting...then hit hard with a carb rush....imagine what that did do your insulin and blood sugar that whole drag down crash is probably the rebound from that.

I have a corn allergy...and I have ulcerative colitis that reacts to glucose, fructose carbs, and I notice edema issues with rice. So I adopted a Paleo/keto diet. I eat a bit to many nuts, seeds, nutritional yeast to stay in ketosis but no starches, fruit, grains, or carbs. There is a transition phase called the keto flu, but once there your body no longer uses carbs/sugars for fuel but fats instead, so you have to eat a lot of them. Taking digestive enzymes is a huge help, and sometimes a probiotic is needed to regulate your system.

On your testing where you eating gluten daily? You have to be eating it every day for 12 weeks prior to blood testing. Light exposures will not really show up on the test.

cyclinglady Grand Master
4 hours ago, KnitSkank said:

I agree with the oxalate comment - brown rice has a lot and can cause many health problems. However, to me it sounds like you might be reacting to the rice. 

I have been gluten free for 24 years. I know how to do it. I was recently diagnosed with yet another auto immune disease and I had not been feeling well - brain fog, tired, etc., so I started to do some reading on my new disease to see if it was causing me to feel down. This is what I have discovered.

Corn gluten can cause intestinal damage just like wheat gluten:  

Open Original Shared Link

Rice, millet, and other grains can also cause problems with those who have compromised gastrointestinal systems, as well as many other common foods. 

I finally found the website of Sarah Ballantyne, PhD - she owns the website thepaliomom.com and I have started what’s called the AIP Diet (auto immune protocol diet). I’ve been on the diet now since 4/12/18 and I began to notice a difference on day four, but a major change on day five. All kinds of energy - the biggest difference was my mind - much clarity!

I will be staying on the diet for one month, then adding and testing out foods slowly - one by one. 

First, I would suggest you stop the fasting - you are sick and your body needs nutrition! Second, consider going on the AIP Diet (its pretty much what I’d call an elimination diet - all commonly known trigger foods removed, so the body can heal).

Here is a link to Sarah’s website on AIP (she is on it herself, as she too has Celiac): Open Original Shared Link

A little more advice: give yourself a break... I know you look at other people your age and think ‘They’ve accomplished so much and I haven’t done anything!’ Well, their food isn’t  causing them to be sick for years, either! I’ve been there - many of us have. Get this figured out now, so you can start living your life on your terms.

Blessings

 

 

I have to disagree.  Corn gluten does not cause a celiac autoimmune reaction.   You can  have an allergy or an intolerance to corn.  

The website you referenced is not legitimate in my mind.  It is a site that is selling products like books, supplements, certifications, and is referring people who suspect a gluten issue to people like chiropractors instead of medical doctors.  The founder actually  is a chiropractor who should be focusing on bone alignment (which I hope he trained for) and is not a celiac expert.  The Gluten Free Society is not a non-profit organization — very mis-leading in my opinion (and I am responsible for maintaining and filing for an educational 501 (3) (c) non-profit).  

Now, the AIP diet?  A small study conducted by Scripps in San Diego was conducted recently.  It was a small study and they selected only IBD (Inflammatory Bowel Disease) patients.  Remarkably, some 70% of the patients went into remission on the AIP diet.  More studies are needed, but the diet may help with other autoimmune issues.  That could be very good news indeed.

Please keep us posted of your AIP diet progress.  

Open Original Shared Link

 

 

 

 


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



Celiac.com Sponsor (A8-M):



  • 2 weeks later...
healthiskey Rookie
On 4/24/2018 at 3:09 PM, beach4ever said:

P.S. Brown rice and carrots are medium/high in oxalates. I do not eat either anymore. I am also gluten free. My daughter has celiac disease, but my results have always come back negative, as well as almost every other test the doctors have run. Long, long story. I could go on for hours!

I'll look into that... thanks for the info! 

On 4/24/2018 at 11:21 PM, Ennis_TX said:

Going on everyone else suggestion and you mention intermittent fasting. Try a ketogenic diet wit the intermittent fasting, or at least a paleo diet with low carbs, one other thing you might consider is you were fasting...then hit hard with a carb rush....imagine what that did do your insulin and blood sugar that whole drag down crash is probably the rebound from that.

I have a corn allergy...and I have ulcerative colitis that reacts to glucose, fructose carbs, and I notice edema issues with rice. So I adopted a Paleo/keto diet. I eat a bit to many nuts, seeds, nutritional yeast to stay in ketosis but no starches, fruit, grains, or carbs. There is a transition phase called the keto flu, but once there your body no longer uses carbs/sugars for fuel but fats instead, so you have to eat a lot of them. Taking digestive enzymes is a huge help, and sometimes a probiotic is needed to regulate your system.

On your testing where you eating gluten daily? You have to be eating it every day for 12 weeks prior to blood testing. Light exposures will not really show up on the test.

I tried going low carbs before and my electrolytes started going all over the place

On 4/24/2018 at 11:21 PM, Ennis_TX said:

Going on everyone else suggestion and you mention intermittent fasting. Try a ketogenic diet wit the intermittent fasting, or at least a paleo diet with low carbs, one other thing you might consider is you were fasting...then hit hard with a carb rush....imagine what that did do your insulin and blood sugar that whole drag down crash is probably the rebound from that.

I have a corn allergy...and I have ulcerative colitis that reacts to glucose, fructose carbs, and I notice edema issues with rice. So I adopted a Paleo/keto diet. I eat a bit to many nuts, seeds, nutritional yeast to stay in ketosis but no starches, fruit, grains, or carbs. There is a transition phase called the keto flu, but once there your body no longer uses carbs/sugars for fuel but fats instead, so you have to eat a lot of them. Taking digestive enzymes is a huge help, and sometimes a probiotic is needed to regulate your system.

On your testing where you eating gluten daily? You have to be eating it every day for 12 weeks prior to blood testing. Light exposures will not really show up on the test.

Yeah i was eating gluten but not much of it. I don't think i was eating it daily. 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,143
    • Most Online (within 30 mins)
      7,748

    ALL4SYLF
    Newest Member
    ALL4SYLF
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      71.5k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This is such an important discussion! While corn gluten (zein) is structurally different from wheat gluten, emerging research suggests some celiac and gluten-sensitive individuals may still react to it, whether due to cross-reactivity, inflammation, or other factors. For those with non-responsive celiac disease or ongoing symptoms, eliminating corn—especially processed derivatives like corn syrup—might be worth exploring under medical guidance. That said, corn’s broader health impact (GMOs, digestibility, nutritional profile) is a separate but valid concern. Like you mentioned, ‘gluten-free’ doesn’t automatically mean ‘healthy,’ and whole, unprocessed foods are often the safest bet. For those sensitive to corn, alternatives like quinoa, rice, or nutrient-dense starches (e.g., sweet potatoes) can help fill the gap. Always fascinating (and frustrating) how individualized this journey is—thanks for highlighting these nuances! Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      I’m so sorry your little one is going through this. Celiac recovery can take time (sometimes months for gut healing), but the ongoing leg pain is concerning. Since his anemia was severe, have his doctors checked his other nutrient levels? Deficiencies in magnesium, vitamin D, or B12 could contribute to muscle/joint pain. A pediatric GI or rheumatologist might also explore if there’s concurrent inflammation or autoimmune involvement (like juvenile arthritis, which sometimes overlaps with celiac). Gentle massage, Epsom salt baths (for magnesium absorption), or low-impact activities like swimming could help ease discomfort while he heals. Keep advocating for him—you’re doing an amazing job!
    • Stuartpope
      Thank you for the input. We go back to the GI doctor in June- she wants to do more labs to check vitamin levels( not sure why the didn't check all at once with the iron being so low) and recheck inflammatory levels. Just trying to find him some relief in the meantime.
    • trents
      Welcome to the forum, @Stuartpope! With Marsh 3b damage to the villous lining of the small bowel, your son is likely deficient in a number of vitamin and minerals due to poor absorption, not just iron. B12 and all the other B vitamins are likely low. I would suggest looking into a high quality gluten-free B complex, D3, magnesium glycinate (the form of magnesium is important) and zinc. A children's multivitamin likely will not be potent enough. We commonly recommend this combo of vitamins and minerals to new celiacs as adults. Thing is, you would want to consult with a pediatrician about dosage because of his young age. In time, with the gluten-free diet his villi will rebound but he may need a kick start right now with some high potency supplements.
    • Stuartpope
      Hey yall!  New Celiac mama trying to help my son! My 3 year old was just diagnosed with Marsh 3b by a biopsy. We started this journey due to him being severely anemic (ferritin levels 1.2) He has had  3 iron infusions to help with the anemia. He has also been gluten free for a month. He is still having leg/ joint pain( he described a burning/ hurting) Im trying to help with his leg pain. He has trouble playing ( spending most days on the couch) He tells me 5/6X a day that his legs are hurting. Gets worse when walking or  playing. We have done OTC pain meds/ heating pad/ warm baths. What else can I do to help him be a kid.     Thanks for the help 
×
×
  • Create New...