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. Iam
      - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Yes. I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy. Numerous dental visits and several professionally made bite plates did very little to help with symptoms
    2. trents
      - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    3. Scott Adams
      0

      New Research Reveals Why the Gut May Stay Sensitive Even After a Gluten-Free Diet

    4. bobadigilatis
      - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm. Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate...
    5. cristiana
      - cristiana replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

      Hi @Scatterbrain Thank you for your reply. Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct. Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,303
    • Most Online (within 30 mins)
      7,748
    Josanita
    Newest Member
    Josanita
    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

    • Iam
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Iam · Posted

      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Feel like I’m starting over

      By trents · Posted

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By bobadigilatis · Posted

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • 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.