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

99.999% Sure I Have Celiac

WesternMA12

Recommended Posts

WesternMA12 Newbie
WesternMA12
Posted

Hello everyone, a friend of mine recently sent me an article/video about Celiac disease because she believed I had it. All my life I have been someone who just as "an overly sensitive stomach." When I was younger we used to joke that I'd thrown up in every restaurant in my hometown because when I was younger I used to vomit a lot, mostly after going out to eat. I have always just thought that I just had a sensitive stomach, and that was that.

However, it appears as if symptoms of those with celiac describe me to a perfect T.

-Upset stomach nearly every time I eat and sometimes nausea (regularly)

-Diarrhea everyday, constipation on few days i don't have diarhea

-bloating, gas

-rash on my wrists/elbows

-I was anemic when I was younger and I fluctuate now. I could not give blood the other day.

-Often feeling weak and dizzy

-fatigue even though I sleep about 9 hours a night

Any help here? I am away at school and cannot go to the doctor for another week, but I am becoming very nervous. Thank you!!!!

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

That could definitely be celiac. Don't be nervous. If you're celiac, you change your diet around and the lifetime of stomach problems disappears in a few months! Figuring out I was celiac changed my life. I had a "nervous" stomach, IBS, gastritis, and would spend days curled up with a heating pad. That's all gone. My stomach is "cast iron" now as long as I don't eat gluten. It's really nice to have a normal digestive system.

Good luck at the doctor, and do try the diet once you've had the testing done. There are a lot of false negatives and people with gluten intolerance that doesn't show on the tests.

ravenwoodglass Mentor
ravenwoodglass
Posted

You do sound like you belong here. If the rash you speak if is blistery, very itchy and leaves long lasting purplish scars you may have DH. You could see a knowledgeable dermatologist and tell them you suspect DH, the skin form of celiac, and request a biopsy for it. Just make sure that they biopsy the skin next to your lesions not the rash itself. It also wouldn't be a bad idea to ask for a celiac blood panel. Do be aware there are false negatives with testing so a strict trial of the diet is needed no matter what the results.

WesternMA12 Newbie
WesternMA12
Posted
  • Author

Thank you guys for the replies! I have a question about the rash, I have gotten this rash in between my elbows every year for about the past 5 as long as I can remember. This is the first year I have gotten it on my wrists as well. This summer I got it REALLY bad on my wrists. I worked at a cafe as well as an ice cream shop and I had to call out from work a lot because you wouldn't want anyone serving you with that kind of rash!

So could it still be celiac related even if it comes and goes? I've had it consistently since summer, but in spurts it gets worse and better although right now it is flaring up.

I am nervous about going to the doctor because it seems lately that being gluten-free is "trendy" which has good and bad implications for celiac people. I'm nervous I will be written off!

Thank you guys for the replies, i appreciate it!

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you guys for the replies! I have a question about the rash, I have gotten this rash in between my elbows every year for about the past 5 as long as I can remember. This is the first year I have gotten it on my wrists as well. This summer I got it REALLY bad on my wrists. I worked at a cafe as well as an ice cream shop and I had to call out from work a lot because you wouldn't want anyone serving you with that kind of rash!

So could it still be celiac related even if it comes and goes? I've had it consistently since summer, but in spurts it gets worse and better although right now it is flaring up.

I am nervous about going to the doctor because it seems lately that being gluten-free is "trendy" which has good and bad implications for celiac people. I'm nervous I will be written off!

Thank you guys for the replies, i appreciate it!

The DH rash can come and go. It depends on the person. I was covered with it as a child but by my teens it went down a bit but then flared again in adulthood.

Don't be nervous about asking your doctor for testing. They should IMHO be testing everyone in the country like they do in some European countries. You doctor really should have already offered to test you. Your doctor works for you don't let him or her intimidate you.

You also have the option of just going gluten free, very strictly, and seeing if it helps. You don't need a doctors permission to go on the gluten-free diet. That said if you do go gluten free and decide later you want to be tested you would have to challenge gluten by eating it daily for up to three months and you still might get a false negative on the tests.

Skylark Collaborator
Skylark
Posted

I am nervous about going to the doctor because it seems lately that being gluten-free is "trendy" which has good and bad implications for celiac people. I'm nervous I will be written off!

The diet does not require a prescription or even a doctor's agreement. B)

WesternMA12 Newbie
WesternMA12
Posted
  • Author

Very true! Unfortunately, because I am a student at a university I eat at the dining commons and in order to be accommodated for I need a form from my doctor.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Very true! Unfortunately, because I am a student at a university I eat at the dining commons and in order to be accommodated for I need a form from my doctor.

All the more reason to bite the bullet and get the testing done.

shopgirl Contributor
shopgirl
Posted

Wouldn't you rather know so you can start getting healthy? The anxiety you feel could be part of the Celiac itself. Anxiety was a huge symptom for me. It's not always easy being gluten-free but it's better then being sick all the time. Get tested so you can move on. You'll always get plenty of help here. :)

WesternMA12 Newbie
WesternMA12
Posted
  • Author

I know this is probably TMI but I forgot to mention that I have mucus in my stools often. The symptoms just keep coming! Ugh. However, I am worried that it may not be celiac because I am not underweight. I am a very healthy weight.

ravenwoodglass Mentor
ravenwoodglass
Posted

I know this is probably TMI but I forgot to mention that I have mucus in my stools often. The symptoms just keep coming! Ugh. However, I am worried that it may not be celiac because I am not underweight. I am a very healthy weight.

Not all celiacs are underweight. Some are quite overweight, some are close to average and some are under. I think the mucous is your system trying to protect itself from the gluten. You should mention it to your doctor along with everything else. Make sure that if your tummy wakes you in pain at night that you tell the doctor. That lets them know that you don't just have IBS because IBS doesn't do that.

WesternMA12 Newbie
WesternMA12
Posted
  • Author

Alright I was confused if being underweight was a major symptom of celiac. I have diarrhea so often I am confused as to how my body is absorbing anything.

After posting the photo of my rash in the DH thread and doing some more research I am sure I have celiac.

ravenwoodglass Mentor
ravenwoodglass
Posted

Alright I was confused if being underweight was a major symptom of celiac. I have diarrhea so often I am confused as to how my body is absorbing anything.

After posting the photo of my rash in the DH thread and doing some more research I am sure I have celiac.

Yea I couldn't figure that out either since I was the heaviest I ever was the last few years before diagnosis and my D was basically constant 24/7. I am naturally a slender person and went back down to my normal weight fairly quickly after diagnosis.

shopgirl Contributor
shopgirl
Posted

I read once that, in some people, if you're not absorbing vitamins and nutrients right, your body goes into a survival mode where it clings to everything you put in it

chasbari Apprentice
chasbari
Posted

I read once that, in some people, if you're not absorbing vitamins and nutrients right, your body goes into a survival mode where it clings to everything you put in it

shopgirl Contributor
shopgirl
Posted

Very much my experience as well. Nobody thought I was ill because I looked "healthy" (ie: overweight!)

Me, too. That's why I was so elated to find that information. The weight fell off when I went gluten-free but the theory certainly makes sense. If I didn't know when I'd be able to get food again, I'd start hoarding it too. I was kind of pleased with my body's (misguided) resourcefulness.

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 Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

      @Jmartes71, I understand your frustration and anger. I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone. My doctors did not recognize nutritional deficiencies. Doctors are trained in medical learning institutions that are funded by pharmaceutical companies...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in...
    3. marion wheaton
      - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Are Lindt chocolate balls gluten free?

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
    4. Dorothy O.
      - Dorothy O. commented on Scott Adams's article in Latest Research
      7

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Even though my brother almost died in his 40s because of coeliac disease, no one ever told family members that we should be tested. As a result, I was almost 70 years old when an orthopaedic doctor suggested that I be tested for coeliac disease. My count was greater than 250. I had loved my bread, baking, especially pies and was never sick, but did not absorb...
    5. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,402
    • Most Online (within 30 mins)
      7,748
    alanhlam
    Newest Member
    alanhlam
    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

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
×
×
  • 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.