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

Symptoms??


Jlewisrn

Recommended Posts

Jlewisrn Contributor

I have a GI appt end of August. I'm looking for some help/opinions before then. Here are my symptoms... I have constant nausea. I always have for as long as I can remember. Every night I get nauseous and a lot during the day. I often get excruciating stomach cramps that leave me in cold sweats about to pass out on the bathroom floor. My stomach is tender for about 3 days afterward. I have been told recently that I have low vitamin D which is strange since I eat healthy and I'm outside all the time. In Jan I went to the ER with a kidney stone. The scan showed I was very constipated. I don't really feel constipated and I go everyday. I also have had unexplained infertility and 1 miscarriage in the past. Now fast forward to now... in January I got an intensely itchy   rash on my legs and underarms.My dr said it was scabies (I'm a nurse) and I was treated 2X without success. I went to a dermatologist and was told it was eczema. I was give steroids and it helped but came back as soon as I got off the cream. I have been itching for 7 months. I have an intense itch in the folds of my vagina a well. This has been going on for about 4-5 months. I also get itchy raised areas on my stomach and upper hips. 

IMG_9993.webp

 

IMG_9184.webp

 

IMG_9127.webp


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



Celiac.com Sponsor (A8-M):



Jmg Mentor
8 hours ago, Jlewisrn said:

have constant nausea. I always have for as long as I can remember. Every night I get nauseous and a lot during the day. I often get excruciating stomach cramps that leave me in cold sweats about to pass out on the bathroom floor. My stomach is tender for about 3 days afterward. I have been told recently that I have low vitamin D which is strange since I eat healthy and I'm outside all the time. In Jan I went to the ER with a kidney stone. The scan showed I was very constipated. I don't really feel constipated and I go everyday. I also have had unexplained infertility and 1 miscarriage in the past. Now fast forward to now... in January I got an intensely itchy   rash on my legs and underarms.My dr said it was scabies (I'm a nurse) and I was treated 2X without success. I went to a dermatologist and was told it was eczema. I was give steroids and it helped but came back as soon as I got off the cream. I have been itching for 7 months. I have an intense itch in the folds of my vagina a well. This has been going on for about 4-5 months. I also get itchy raised areas on my stomach and upper hips. 

Hello and welcome :)

No-one here can diagnose you (try telling your doctor the internet says its celiac!) but you may have found your answer. All your symptoms could be caused by gluten. Only way is to test and only way for test to work is for you to STAY EATING GLUTEN until all testing is complete.

I don't know how read up you are on celiac? There's an FAQ stickied above and I did a post awhile back to try and answer some common questions also: https://www.celiac.com/forums/topic/115138-suggestion-faq-intro-post-for-the-diagnosis-board-input-requested/?do=findComment&comment=970127 just ignore the top two tests, these are the ones you need your GP to run:

Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

Try and get the full panel, some only test on one of them. Also see if you can get another referral to the dermatologist for a test on your skin for celiac, That needs to be near the area not on it. Check the forums sub section for Dermatitis Herpetiformis as you could get your diagnosis via that way. 

So, read up via the linked post, stay on gluten till your appointment (and beyond most likely as the clinical pathway is blood test then endoscopy and you need to be on gluten for both.  However if you finally reach the end of the diagnostic path and the answer is negative, DO give the gluten free diet a try at that point. If you;re like me you could test negative but still react.

You will find lots of support here, ask as many questions as you like. 

Best of luck!

Matt

 

 

Jlewisrn Contributor

Thank Matt. I have pretty positive it's something I am eating but I just don't know what. After researching I came across gluten. I'm wanting answers but actually hoping that's not it... I have read to continue to eat gluten so I am but the itching is driving me mad (and my husband. He says I thrash around all night and has been tempted to go to the other room). I'm not looking for a diagnosis here just maybe some common problems so I don't feel so crazy. Thank you so much. 

Jmg Mentor
On 8/1/2017 at 5:48 PM, Jlewisrn said:

I'm wanting answers but actually hoping that's not it...

Well, don't be too disappointed if it is. There's very few conditions which can be pretty much totally controlled by a diet change, no medication, no side effects etc. It can be a pain, no question, but if it does turn out to be that you could look forward to a full recovery in time. :)

 

Vitalia Newbie

Oh my, sounds like celiac to me. I had a lot of these symptoms and was given steroid creams etc. I also had chronic Y.I, and flus, breathing difficulties, nausea, anxiety and since going gluten-free, it's disappeared. 

Jlewisrn Contributor

It's not yeast just itching like everywhere else. I am so hoping for answers. If it's not it at least I can rule that out and move on to finding out what it is. I'm afraid if doesn't suggest to test me for that and I ask he will just think I'm on the "celiac, gluten free" bandwagon. I've already gotten some eye rolls if I mention it. 

cyclinglady Grand Master

Read the DH section of the forum.  You will find out that many DH suffers can be seronegative on the celiac blood tests.  A skin biopsy (taken in a very specific way) can diagnose DH.  Taking steroids can ruin test results.  Consider finding a celiac-savvy GI or Derm.  

In any case, some thing is wrong.  Keep advocating for your health!  


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



Celiac.com Sponsor (A8-M):



Archived

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

  • 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. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,156
    • Most Online (within 30 mins)
      7,748

    mike101020
    Newest Member
    mike101020
    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

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.