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

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.

  • 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. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      IBS-D vs Celiac

    2. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

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

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    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

    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
×
×
  • 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.