Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Could it be Celiac Disease?


Mags55

Recommended Posts

Mags55 Rookie

Hello, I'm Mags and I've just joined up,

I had bloods done a few weeks ago as I was experiencing some neuropathy symptoms.

Seems I have Folate deficiency anemia.

My folate level was 2.4 and my B12 was 318 ( normal range) I've been told but don't know about my iron levels.

My GP decided to do blood test and stool sample for celiac disease.

The bloods were sent off on Thursday the 7th and stool sample a few days after.

I checked on Friday and results still aren't back yet.

My symptoms are bloating, excessive wind, severe abdominal pain usually at night/early hours of the morning, followed by terrible sweats and diarrhea.

The abdominal pain and diarrhea. doesn't happen all the time so I always put it down to undiagnosed IBS.

I do remember as a child around 7 years old, running home from school because of cramps followed by terrible diarrhea which ran down my legs as I ran home.

Also when I was a teenager in school it happened again but I just about made it to the toliet and the smell was atrocious.

Does it sound like IBS or Celiac disease?

Would appreciate some of your thoughts on this.

Thanks ?


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I think you have to wait for test results.  Celiac Disease has over two hundred symptoms.  Problem is they often overlap with other illnesses.  

Welcome to the forum.  

Mags55 Rookie

Thank you,

Yes I know there are loads of other symptoms.. I also have Fibromyalgia and arthritis, depression, anxiety, neuropathy symptoms etc..

Can I ask what your initial symptoms were?

Heemheem Newbie
(edited)

Do a biopsy test ..    it may show early symptoms of this disease like mild shortening of villi of the small intestine  but celiac disease test may come out as negative .   ( My test came out negative but biopsy test says all the early tell tale symptoms)

Edited by Heemheem
Heemheem Newbie

Initial symptoms of mine include high intolerance to lactose , bloating ,  fats in the belly, nausea right after taking milk ,  loose motion and memory loss,itchiness, increased appetite but no weight gain and  irritability after taking milk products  ..   but I can slightly tolerate gluten products than milk products.        My biopsy and endoscopy results show I have mild damage to my stomach (antrum , shortening of  villi).   Celiac test is negative but my stomach (from the biopsy and endoscopy result) shows the acute signs and symptoms of celiac disease .      You need to rely more on biopsy and endoscopy rather than on celiac test. 

 Remain strong and positive .  ? 

Mags55 Rookie

Thank you,

Yes I know there are loads of other symptoms.. I also have Fibromyalgia and arthritis, depression, anxiety, neuropathy symptoms etc..

Can I ask what your initial symptoms were?

Mags55 Rookie

Thank you, I have bouts of itchiness with no visible signs, irritability, I've lost 1 stone in weight, but find my appetite has increased since started folic acid supplements.

I am hoping the results of my tests will be back today.

Thank you all so much for your help and advice.

Not sure if I am replying to you or to myself as new to the site lol ??


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi Mags,

Your symptoms sounds like celiac disease to me.  They could be something else I suppose but the testing should help determine that.  The testing for celiac disease is a blood test to check for antibodies to gliaden, and then an endoscopy to take 4 to 6 biopsy samples of the lining of the small intestine.  They check the biopsy for damage consistent with celiac disease.  The antibodies are DGP IgA, DGP IgG, EMA, total IgA,  Ttg-IgA.  There is no medically accepted stool sample test for celiac disease.

There is a thread titled "Newbie 101" in the "Coping with Celiac" forum section with some good info on testing and getting started on the gluten-free diet.

Welcome to the forum! :) 

Mags55 Rookie

Hi and thank you so much.

You are all very kind and supportive.

I will check out the post.

Thanks again. ???

cyclinglady Grand Master
(edited)
3 hours ago, Mags55 said:

Thank you,

Yes I know there are loads of other symptoms.. I also have Fibromyalgia and arthritis, depression, anxiety, neuropathy symptoms etc..

Can I ask what your initial symptoms were?

I simply had anemia — no GI issues.  Two months after my celiac disease diagnosis, I suffered two vertebrae fractures doing nothing.  As a result of undiagnosed celiac disease, I developed osteoporosis.  You can see how differently celiac disease can present.  

Edited by cyclinglady
Mags55 Rookie

Hi cyclinglady,

That is quite shocking to hear that.

Were you surprised by the diagnosis or did you suspect that you might have had Celiac disease?

cyclinglady Grand Master

I was very surprised.  I had no idea I had celiac disease or even suspected it.  Testing is critical for a diagnosis.  I encourage the full celiac blood panel because I only tested positive to the DGP IgA which is not common.  My biopsies revealed intestinal damage.  

 

Mags55 Rookie

Yes that makes perfect sense.

It's quite frightening that things can be going very wrong in your own body and you may have no idea it's happening.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,186
    • Most Online (within 30 mins)
      7,748

    Kris46
    Newest Member
    Kris46
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...