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

Does this seem like Celiac and/or or gluten insensitivity?

flapdragon
 Share

Recommended Posts

flapdragon Newbie
flapdragon
Posted

Sorry if this is long.

Every month since last September I've been getting really sick. Always starts off the same way, I'll suddenly have the urge to pee a lot, like every 5-10 minutes and this lasts for 2-3 hours. Then my stomach will feel really empty like there's a hole in it. I'll start to get stomach cramps, then chills and extreme fatigue (the worst part), and I feel like I'm gonna faint. No fever. This will last a couple weeks (I'll be bedridden most of the time due to the fatigue) then I'll be recovered for a couple more weeks, then it will start back up again.

First time this happened it was September, started a couple days after unprotected sex with someone, though I have no idea if that's related or not (I got a visual diagnosis for HSV right after the encounter, test results all negative, doctor still thinks I have it though. Tested again recently, and negative for all other STD's). I started throwing up bad, had to go to the ER and they did a scan and found a small hole in my small intestine. I've had these symptoms every month since, minus the vomiting, and I'm waiting for the results of an endoscopy at the moment.

I'm just wondering if this sounds gluten-related, because it seems to happen often whenever I have pasta for dinner. My doctor did a blood test and it was negative for Celiac.

Thanks for listening

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Which celiac disease blood tests were given?  While you could still have celiac disease, I am glad you had an endoscopy (which your doctor could still check for signs of celiac disease).    Celiac disease does not cause a large visible hole in your small intestine, but other autoimmune disorders or other illnesses can.  

flapdragon Newbie
flapdragon
Posted
  • Author
1 hour ago, cyclinglady said:

Which celiac disease blood tests were given?  While you could still have celiac disease, I am glad you had an endoscopy (which your doctor could still check for signs of celiac disease).    Celiac disease does not cause a large visible hole in your small intestine, but other autoimmune disorders or other illnesses can.  

1 hour ago, cyclinglady said:

Which celiac disease blood tests were given?  While you could still have celiac disease, I am glad you had an endoscopy (which your doctor could still check for signs of celiac disease).    Celiac disease does not cause a large visible hole in your small intestine, but other autoimmune disorders or other illnesses can.  

Thanks. It was an antibody test and was negative for ttg

 

cyclinglady Grand Master
cyclinglady
Posted

The TTG is the standard common screening test for celiac disease.  It is good, but does not catch all celiacs.  If still on a daily diet of gluten, you could ask for the EMA and DGP tests (IGA and IgG versions).  But I would suggest waitIng for the endoscopy results.  Again, a hole in the small intestine is not a sign of regular celiac disease.  I could be wrong, but I have never seen that in literature or from members.  
 

 

Scott Adams Grand Master
Scott Adams
Posted

Did your doctor test you for diabetes? Frequent urination is a common symptom for it.

Do you have you celiac disease blood test results? I wonder if they were really negative, or were really not strong positive, give that your doctor did an endoscopy. Also, did they do the endoscopy to find celiac disease?

cyclinglady Grand Master
cyclinglady
Posted
2 hours ago, Scott Adams said:

Did your doctor test you for diabetes? Frequent urination is a common symptom for it.

Do you have you celiac disease blood test results? I wonder if they were really negative, or were really not strong positive, give that your doctor did an endoscopy. Also, did they do the endoscopy to find celiac disease?

You would think an ER would run a standard glucose test, but you never know.  The perplexing thing is that the OP had a hole in his/her gut on a scan.  I think that is why the endoscopy was ordered.  Hopefully, they also checked for celiac disease.  
 

You have been here a long time.  Ever hear of celiac disease causing a perforation of the small intestine?  Not me.  Other things, but not celiac disease.  

flapdragon Newbie
flapdragon
Posted
  • Author

The endoscopy results came back. Everything looked normal. They think it's ibs so they're giving me an anti depressant that may help with the gi symptoms. Also I was tested for diabetes, no sign of it

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

This article is about gastrointestinal Beriberi.  Are your symptoms similar to the patient in the article? 

What did the doctor do about that hole in your intestine?  

 

 

 

flapdragon Newbie
flapdragon
Posted
  • Author
51 minutes ago, knitty kitty said:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

This article is about gastrointestinal Beriberi.  Are your symptoms similar to the patient in the article? 

What did the doctor do about that hole in your intestine?  

 

 

 

Thanks. That doesn't really sound like my symptoms. She didn't really do anything about the hole. It was small and seemed to heal on its own

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

  • Member Statistics

    • Total Members
      133,641
    • Most Online (within 30 mins)
      7,748
    JennaK23222
    Newest Member
    JennaK23222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
      Concerning GP advice

      By trents · Posted

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Concerning GP advice

      By cristiana · Posted

      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
×
×
  • 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.