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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,559
    • Most Online (within 30 mins)
      7,748
    Valerie Ensor
    Newest Member
    Valerie Ensor
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.