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

Could All My Symptoms Be Caused By Celiac?

HelpinOhio

Recommended Posts

HelpinOhio Explorer
HelpinOhio
Posted

Ive made several other threads in here, but I wanted everyone to see all my symptoms and what you think of them. At this point I havent had the positive diagnosis yet, but am going to get another test at the end of the month, and Im now 90% sure that I do have Celiac Disease. My mom has it and everything leads right back to Celiac Disease. When I went gluten free for a few days I already started to feel better.

My symptoms:

Physical Symptoms: severe fatigue, malaise, pallor, joint pain and grinding, stiffness, muscle aching and easy cramping, severe temperature sensitivity, skin turns white/purple/blue when cold and red when hot, also numbness, very dry skin and hair, flushed face, sunken eyes, teeth look bad yellow/clear because of loss of enamel, photosensitivity, constant colds and sinus infections, pressure in head, headache, constant ringing in ears, constipation, bloating and gas, reoccuring rash on nose and cheeks, lightheadedness, cant breathe, ocassional palpitations

, probable stunted growth, low weight with skinny bones, weakness, worsening vision and hearing, need to eat and drink constantly or I feel worse...

Mental/Emotional Symptoms: Mild Depression

, moderate anxiety, temporary psychosis, feeling of unreality, like being in a bad dream, everything is passing me by, blunted mood, possible psychic abilities, lack of emotion, lowered inteligence, school grades went from As to Ds, mental fatigue, feeling confused/disoriented, bad memory, no motivation, cant concentrate, mood swings...

From my research, Celiac is the most likely. Next after that is Lupus, but Im pretty sure its not that.

What do you think?

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

Celiac.com Sponsor (A8-M):


chasbari Apprentice
chasbari
Posted
Ive made several other threads in here, but I wanted everyone to see all my symptoms and what you think of them. At this point I havent had the positive diagnosis yet, but am going to get another test at the end of the month, and Im now 90% sure that I do have Celiac Disease. My mom has it and everything leads right back to Celiac Disease. When I went gluten free for a few days I already started to feel better.

My symptoms:

Physical Symptoms: severe fatigue, malaise, pallor, joint pain and grinding, stiffness, muscle aching and easy cramping, severe temperature sensitivity, skin turns white/purple/blue when cold and red when hot, also numbness, very dry skin and hair, flushed face, sunken eyes, teeth look bad yellow/clear because of loss of enamel, photosensitivity, constant colds and sinus infections, pressure in head, headache, constant ringing in ears, constipation, bloating and gas, reoccuring rash on nose and cheeks, lightheadedness, cant breathe, ocassional palpitations

, probable stunted growth, low weight with skinny bones, weakness, worsening vision and hearing, need to eat and drink constantly or I feel worse...

Mental/Emotional Symptoms: Mild Depression

, moderate anxiety, temporary psychosis, feeling of unreality, like being in a bad dream, everything is passing me by, blunted mood, possible psychic abilities, lack of emotion, lowered inteligence, school grades went from As to Ds, mental fatigue, feeling confused/disoriented, bad memory, no motivation, cant concentrate, mood swings...

From my research, Celiac is the most likely. Next after that is Lupus, but Im pretty sure its not that.

What do you think?

Your skin reaction to cold sounds like it might be Reynuad's Syndrome which is autoimmune. Same with the joint pain. My RA and other autoimmune diseases were diagnosed 5 years before they finally made the correct diagnosis of celiac. I have had terrible dental health with many root canals and lost my first tooth to being pulled shortly before getting on the road to proper diagnosis. I have several more that I am trying to hang on to. Seeing that there is a genetic history with your mother having it seems to point in this being a logical avenue of investigation. I would warn you that you might want to make sure you have a doctor willing to test for it even if the blood work is negative if you are starting to go gluten free. My blood work was negative but my EGD biopsy was very conclusive. I had been off gluten starting in mid November, had blood work 2 weeks later which was negative and had my scope 6 weeks after being gluten free. Before the diagnosis and dietary intervention I would sit on the couch doing nothing and wondering what was wrong with me. I would walk downstairs to the workshop knowing I needed clean it up and would just about cry because I had no idea how to do what I knew needed to be done. I was desperately faking it through work on many days. Now..no fog!

I hope you find the answers.

CS

eringopaint Newbie
eringopaint
Posted

I had undiagnosed celiac for about 30 yrs... and have/had almost all of the same things you have listed here. I was mostly gluten-free for about 5 yrs but didn't get strict until last April. It wasn't until I completely removed all gluten that I started to see real changes.

Are you scheduled to be tested?

Either way you should continue to follow gluten-free diet. It took about 3 months for me to see big changes. And I continue to be amazed at how well I feel. I also had migraines for 30+ yrs and they are gone - unless I eat gluten.

My bone pain and fatigue had gotten so bad early in 08 I was also thinking I had lupus or worse. By the time I had the celiac blood test I was eating so little gluten that I tested negative. Though I did test positive to the celiac gene. Also, I was very deficient in vitamin D from malabsorption.

Let me know how you are doing.

erin

glutenfreegirl Enthusiast
glutenfreegirl
Posted
Ive made several other threads in here, but I wanted everyone to see all my symptoms and what you think of them. At this point I havent had the positive diagnosis yet, but am going to get another test at the end of the month, and Im now 90% sure that I do have Celiac Disease. My mom has it and everything leads right back to Celiac Disease. When I went gluten free for a few days I already started to feel better.

My symptoms:

Physical Symptoms: severe fatigue, malaise, pallor, joint pain and grinding, stiffness, muscle aching and easy cramping, severe temperature sensitivity, skin turns white/purple/blue when cold and red when hot, also numbness, very dry skin and hair, flushed face, sunken eyes, teeth look bad yellow/clear because of loss of enamel, photosensitivity, constant colds and sinus infections, pressure in head, headache, constant ringing in ears, constipation, bloating and gas, reoccuring rash on nose and cheeks, lightheadedness, cant breathe, ocassional palpitations

, probable stunted growth, low weight with skinny bones, weakness, worsening vision and hearing, need to eat and drink constantly or I feel worse...

Mental/Emotional Symptoms: Mild Depression

, moderate anxiety, temporary psychosis, feeling of unreality, like being in a bad dream, everything is passing me by, blunted mood, possible psychic abilities, lack of emotion, lowered inteligence, school grades went from As to Ds, mental fatigue, feeling confused/disoriented, bad memory, no motivation, cant concentrate, mood swings...

From my research, Celiac is the most likely. Next after that is Lupus, but Im pretty sure its not that.

What do you think?

Hi there I did not know manyof these where celiac related i too am just trying to figure this all out I was tested a few yrs back and neg but still could not fight the feeling it was wrong as I too have it in my family. so had ND look at my results she picked up the very high IGg on the test and said that should show something so now I am off to entrolab waiting for those results but reading your post has helped I have been reaserching for months and months now to figure this allout thank you for this list I am not crazy....as I was told by one Dr you have anxiety you need pills,,, I sais thank you but I am do not suffer from anxiety something is causing it I could feel it when i eat....and now I know it is not just me...keep us posted on your journey every little bits helps everyone especially us new guys still trying to figure this all out...

Remenyke Rookie
Remenyke
Posted

Forgive me for sounding very House-ish, but your symptoms sound a lot like Lupus to me. Have you been check out?

flourgirl Apprentice
flourgirl
Posted

Sounds like a good chance you are Celiac to me. I'm also willing to bet you'd be a positive for Reynaud and/or Lupus. The facial rash definitely sounds like Lupus. From what I've been reading, autoimmune disorders often coincide, making diagnosis even more difficult. Get you test for Celiac, and I would suggest an appointment with a good Rhuematologist. Good luck to you.

HelpinOhio Explorer
HelpinOhio
Posted
  • Author

I cant remember if Ive been tested for Lupus or not. I was tested for several other auto immune diseases like Rheumatoid though, and everything came back negative.

A lot of my symptoms do sound like Lupus, thats why I was considering it. There are reasons why I doubt that I have it though. One, I have no family history of Lupus. and Two, Im a 18 year old boy. Over 9/10 people with Lupus are girls, its mostly a female disease. The facial rash was the one that got me the most worried though. It started 2 summers ago when I had been in the sun and using this face wash. My whole face was very dry and irritated, then the rash appeared. Noone else seemed to notice it, but it was obvious to me. I stopped using the face wash immediately, but the rash didnt go away. I must have had it for 3 months or so. I havent had the rash for since then, but my face is still red.

Being diagnosed with Lupus would be very bad news. Noone wants that diagnosis. Lets just hope its Celiac Disease and not that. Ive heard a lot of people with symptoms as bad or worse than mine, and it was just from Celiac Disease. Im keeping my hopes up.

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

Celiac.com Sponsor (A8-M):


sugarsue Enthusiast
sugarsue
Posted

Super big hugs to you! Sounds Celiac to me.... I wanted to mention that I had the butterfly rash on my face and they thought lupus but it turned out to be hashimoto's thyroiditis. GOOD LUCK with it all!

eringopaint Newbie
eringopaint
Posted

Redness on the face could also be rosaca which is also an autoimmune reaction - and very much connected with celiac. My rosacea was getting slowly but surely worse until I stopped gluten.

erin

sammychaser Newbie
sammychaser
Posted

I had many of your symptoms and was diagnosed with gluten intolerance. Just curious ..............Have you been screened for osteoporosis ?

stellar Newbie
stellar
Posted

I had several of your symptoms before being diagnosed with Celiac in November 08. Fatigue, muscle aches, pain in my cheekbones with lots of sinus drainage, depression, anxiety, headaches, numbness, hot flashes, the usual diarrhea and vomiting, and just a overall "weird" feeling... like I wasn't even in my body at times. The rash on your face however could be Lupus. Anyway you look at it, it sounds like you have an autoimmune disease and need to see a rheumatologist if you haven't already.

Best of luck to you! The sooner you get diagnosed the better you'll feel!

mommida Enthusiast
mommida
Posted

It sounds like you have done your homework!

Find a great doctor and get tested. For Celiac, Lupus, Lyme Disease, thyroid, and any other auto-immune that could fit the symptoms. These things aren't easy to diagnose. Take your list of symptoms to the doctor. Start a food journal too. It will help you start to read labels and find any food intolerances before starting a gluten free diet. (If you need to.) Don't start the gluten free diet before your testing is done! How much artificial sweeteners and soy are you consuming?

Some good news... a gluten free diet is helpfull for a lot of auto-immune diseases.

Archived

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

Go to topic listing

  • 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. Celiac.com Sponsored Post
      0

      An Inclusive Valentine's Day: Easy Tips for a Celebration Everyone Can Enjoy

    2. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    3. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      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...
    4. knitty kitty
      - 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.

      @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...
    5. Jane02
      - 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.

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

  • Member Statistics

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748
    Erica Johnson
    Newest Member
    Erica Johnson
    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
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

      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?
×
×
  • 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.