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
Jlewisrn
Posted

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
Jmg
Posted
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
Jlewisrn
Posted
  • Author

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
Jmg
Posted
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
Vitalia
Posted

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
Jlewisrn
Posted
  • Author

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
cyclinglady
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,983
    • Most Online (within 30 mins)
      7,748
    CRae
    Newest Member
    CRae
    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

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By tiffanygosci · Posted

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
×
×
  • 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.