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

Please Help! Could This Be Cd?

Jocelyn357

Recommended Posts

Jocelyn357 Rookie
Jocelyn357
Posted

Hi everyone. I am so glad to have found this board, and after a week of just reading, I've decided to seek some advice. So I appreciate any help you can give me. I know there are over 200 symptoms to celiac, and intolerance. I've done alot of reading on here already, but just wanted to see if my particular "set" of symptoms is typical.

-I have pretty much been constipated my WHOLE life (26 yrs). I have a BM maybe every 2 to 3 days, occasionally longer. Sometimes it makes me feel sick, other times no pain. Maybe because it's all I know. When I do finally go, sometimes it presents itself with stomach pains or diarhea. Not all the time. If it is a stomach ache, though, I almost feel like I'll pass out it hurts SOOO BAD.

-I have been chronically fatigued since childhood. I cannot EVER remember ONE DAY when I was not tired from beginning to end. Not in my whole life. It has always made it hard to hold a job/school, even socialize. I can go out for a bit, but am always the first to leave because I just need to lay down. I have learned every excuse in the book to tell people why I need to leave a get together, or why I cannot participate in something.

-Low immune system. If it's out there, I get it. When I get sick, I get REALLY sick. Usually end up in the ER. I never get just a "little" cold. I pretty much never feel good, so if I get sick, it's bad.

-Diagnosed sever panic disorder at 18, but had it since childhood. Taken med's for 8 years and don't suffer from "panic" often, but live with generalized anxiety pretty much all the time.

-Was always very thin until I turned 17, then WHAM! Overweight. Have lost significant weight twice, but unable to keep it off. Now at the "low end" of obese.

-Can't eat much bread. Gives me SEVERE heartburn/acid reflux. Sometimes feels like my esophegus is burning off.

-Suffered from 3 seperate long episodes of a skin rash when I was younger. Very itchy "pimple like" on legs, knees, hands. Doc thought I was allergic to flee bites so we got rid of cat. Rash came back several years later. Haven't had it in a long time.

-ADD like symptoms. Score with high IQ, always told I'm very intelligent, but never been able to make it through school. VERY hard for me to sit and listen to a lecture, plus fatigue sets in.

-Neurological issues- severe blurred vision, when I was 18 I had SEVERE episodes of dizziness where I would stand up and fall down, sometimes black out. Doc thought seizures but EEG normal.

Sorry this is so long. I'm sure I have more to share, but these are my really bad symptoms. I pretty much live with this crap all the time. Sometimes it's better, sometimes worse. I guess I just thought I would always have to live with it, till a friend with celiac said some people in her support group have similar experiences. I'm tired of making up excuses as to why I can't be with friends, have a life, etc. Does this sound like celiac to you? I started gluten-free diet right away, because that's how desperate I am. Insurance is all messed up right now, but would be willing to do Enterolab. Is it worth it/accurate? Help!

Thanks,

JOCELYN

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

Celiac.com Sponsor (A8-M):


Jocelyn357 Rookie
Jocelyn357
Posted
  • Author

Also forgot to mention gas and ALWAYS bloated.....YUCK!

Guest kmmolina
Guest kmmolina
Posted

Hi Jocelyn...also glad you found this board. It has been a world of help to me and as I read through all the threads...it looks as if it has been helpful to everyone else. I'm not a medical professional but if it were me I would ask to have the blood work for Celiac done to see if you have the antibodies. Just in case you have not already read this...don't go off gluten until after the tests are done; that could give you a false reading. Good luck...Kathleen

SueC Explorer
SueC
Posted

Hi Jocelyn,

Welcome!

Yep..... ALL your symptoms sound like celiac disease!! :( If nothing else your skin rash is concerning. It sounds like DH but of course can't be sure without a biopsy. I had DH for years while doc after doc told me it was exzema........

If you don't have the money for testing try the diet. If it works and makes you feel better that's all you need. If you do decide to do Enterolab make sure you go back to eating gluten!!!

Good Luck!

KaitiUSA Enthusiast
KaitiUSA
Posted

I hear great things about Enterolabs.

Obviously since you are gluten free testing should not be done because you need to be on gluten for that.

How long have you been gluten free? Any improvements?

I think it sounds like a possibility of celiac

Jocelyn357 Rookie
Jocelyn357
Posted
  • Author

Thanks for the quick responses! I have only been gluten free for 4 days. Just in the 4 days, I've had no gas problems or acid reflux which is amazing. We are in ministry and I don't have the money to pay for Doctor stuff, but may be able to swing enterolab work. BTW, my rash was not much like ecsema, but more like bug bites all over. But they happened multiple times over years. 2nd day on gluten-free diet, I had a bit of a stomach ache and diarrhea. 3rd day, had another BM, no pain. 2 days in a row BM? Amazing.

SueC Explorer
SueC
Posted

A positive dietary response is a big indicator for celiac. I say keep on with the diet but if you want a positive diagnosis via Enterolab you need to be back on gluten for a couple of months.

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted

Jocelyn,

I just got my Enterolab results only 2 days ago and I can tell you it was worth every penny. I've had so many tests done over the past 2 1/2 years with everything coming back normal yet my whole world was falling part. I did figure out in the last year that something in my diet was making me sick...just didn't know exactly what until now. The Enterolab was the first test to come back positive. I did get dramatically better after taking gluten out of my diet but just wasnt aware of all the places where gluten can hide so I continued to get sick. I feel very bad for you since you've been feeling this way all your life. I've only been sick for 2 1/2 years so I can't imagine all you've gone through. I do know how it feels to not be able to hang out with friends because of feeling too exhausted and depressed. I could never make plans anymore because I would always end up breaking them anyways and after awhile people just don't ask anymore. I couldn't understand why I couldn't even eat a meal or drink a beer without feeling totally spaced out and sick. I also had severe blurred vision and dry eyes...went to the eye specialist several times but like everything else they couldnt find anything wrong. I'm sure now that gluten was/is the cause of most if not all of my symptoms. I was also probably borderline suicidal a few moths back when I was eating normally. I was miserable EVERY day but when I changed my diet the depression was completely gone in only a few days...it was a very dramatic change back to my happy self. I know my physical symptoms will take longer to go away but they are much much better than when I couldnt even get out of bed. I felt like I lost my mind before I stopped eating gluten...I couldn't focus on anything and I had trouble with my memory. I was in a daze all the time and even though all my life I was a quick learner I all of a sudden couldn't seem to grasp anything. Thankfully, I dont have these problems anymore. I hope you experience the same results from taking gluten out of your diet...remember to check the unexpected places like lotions and stuff like that. Those are the things that were making me sick when I thought I was gluten-free. I do highly recommend Enterolab but if you don't want to spend the $$ just yet...see how the diet works first. You don't have to be eating gluten to do the test so there is no rush. Hope you feel better soon :)

Smaddenil Newbie
Smaddenil
Posted

Well, at first I was diagnosed with Irritable Bowel Syndrome and my GYN said to take a stool softener every day. At first, I didn't but later I did. Now I never miss the stoof softener. I realize a lot of people here have diahrhea (sp!) but I am usually constipated with bouts of the other. My doctor said to try a gluten free diet or get the tests, but they are not pleasant so keep to the gluten-free. I am intending to go with the Specific Carbohydrate Diet after our trip the next two weeks, but I will still stay gluten free. I don't want to spend a trip to Europe writhing on the bed! Stay happy! There are such worse things to happen!

Suzanne

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. 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...
    2. 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...
    3. 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • 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?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.