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Could it be Celiac Disease?

Mags55
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Mags55 Rookie
Mags55
Posted

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 ?

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cyclinglady Grand Master
cyclinglady
Posted

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
Mags55
Posted
  • Author

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
Heemheem
Posted
(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
Heemheem
Posted

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
Mags55
Posted
  • Author

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
Mags55
Posted
  • Author

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 ??

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GFinDC Veteran
GFinDC
Posted

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
Mags55
Posted
  • Author

Hi and thank you so much.

You are all very kind and supportive.

I will check out the post.

Thanks again. ???

cyclinglady Grand Master
cyclinglady
Posted
(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
Mags55
Posted
  • Author

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
cyclinglady
Posted

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
Mags55
Posted
  • Author

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.

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      Is this celiac?

      By Hmart · Posted

      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
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    • Hmart
      Is this celiac?

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      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative.  I have gone gluten free. In week 1 I had a flare-up that was similar to my original symptoms. I got more careful/serious. Now at the end of week 2 I had another flare-up. These symptoms seem to get more intense. My questions:  1. How do I know if I have celiac and not something else? 2. Are these symptoms what others experience from gluten?  When I have a flare-up it’s completely debilitating. Can’t sleep, can’t eat, can’t move. Body just shakes. I have lost 10 pounds since going gluten free in the last two weeks.
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