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

Could I Have Celiac Symptoms


kasia

Recommended Posts

kasia Rookie

Hi there, this is my first post on the forum so hello to everyone.

About 7 weeks ago, I had a stomach virus that cleared some days later (diarrhoea & sickness), but came back a week later with a vengance after I had eaten a great big plate of shellfish for my anniversary, so I put it down to my stomach still being sensitive.

Since then however I have had diarrhoea every morning to varying degrees. I have had lots of nausea & have vomited undigested food on 4 occasions. Also (sorry TMI) I often see my undigested breakfast in my 3rd bowel movement of the day. Not surprisingly I have lost 11lbs & feel extremely weak. I get horrible bloating & flatulence & lots of burping every evening, but seem to get only a little amount of pain. My appetite is useless - I eat less than my 2 year old daughter.

My GP insists it is IBS & has given me no advice apart from eating small meals & an anti nausea medication (motillium). At my insistence I am seeing a gastroenterologist via a private health care comapny, & she has performed a gastroscopy which showed my stomach to be healthy, but indicated that I may have an absorption problem (smooth duodenum?). Unfortunately I do not have an appointment with the gastroenterologist for 2 weeks & am at a loss as to what to do now as I feel awful (tremendous fatigue)

Do you think this is a symptom of being a celiac? Last night I ate pasta & was fine, but this morning I had a raging thirst which I could not satisfy & ended up vomiting all of the juice that I had drunk.

If so do you have any recommendations for controlling diarrhoea, increasing my appetite, & what tests should I be asking my consultant to do? I have not yet even had a blood test & wonder if I could be anemic because of the large weight loss. I guess I could also be diabetic?

Any help would be greatly appreciated. Sorry for the moan!

Kate


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



Celiac.com Sponsor (A8-M):



kasia Rookie

Oops - sorry my son was messing with play dough & I messed up.

Just wanted to say that have just read Chris E's post & his symptoms are quite like mine, so sorry for the duplidate & I hope you feel better soon Chris.

Kate

aikiducky Apprentice

Not that I'm a doctor, but a smooth duodenum sounds really really suspicious. What exactly did the doctor mean by that? Because flattened vili almost certainly means celiac, no further testing necessary, go gluten free ASAP. Only you should check with your doctor to hear what exactly it is they saw.

Unless it turns out they indeed saw celiac damage, in which cease you just need to start learning about the diet, you should have your doctor run bloodwork for celiac. I hope someone here can post the exact tests they should do. Also, did they take biopsies during your gastroscopy, otherwise they could do an endoscopy and take biopsies to see what state your small intestine is in.

Last but not least, trying a gluten free diet doesn't require a prescription, you can choose what you put in your mouth. It's worth it to see if it helps. But you shouldn't go gluten free before having the tests, because it can give you a false negative test result if you're already gluten free.

I didn't have a positive test result because I went gluten free first and had testing after that. But I feel so much better that I refuse to ever eat gluten again, even for an official diagnosis. :)

Hope this helps, and hope you'll get some answers soon. I'm sure others will also chime in with advice and opinions.

Pauliina

kasia Rookie

Hi Paulina,

Thank you so much for your reply - it really has made me feel a bit better (I am at the stage where I feel so had I've convinced myself that I have something very sinister!)

The doctor did do biopsies which should be back when I see her in 2 weeks, but no-one has yet suggested any blood tests. Is the duoedenum part of the small intestine (biology was a long long time ago)?

Looking back my symptoms may be worse when I have gluten (I must look up what's in it!). Also my niece is gluten intolerant & I do have sores on the roof of my my mouth.

Thank you once again

Kate

Nantzie Collaborator

Hate to mention it but glad you happened to say something. Play Dough has wheat in it. If I remember right it pretty much IS wheat...

Welcome to the world of hidden gluten. <_<:rolleyes:

Nancy

LKelly8 Rookie

Hi Kasia, I always thought a "smooth" duodenum was normal and "scalloping" was abnormal but I guess there are all kinds of signs they can see in there! I found this abstract from the Journal of Digestive Diseases and Sciences. I wonder if "loss of Kerkring's fold" is what she meant by smooth? :blink:

"Abstract:

Duodenoscopy in celiac disease has identified several markers of the disease. Our aim was to evaluate, in a prospective study, the usefulness of the different endoscopic features in 100 consecutive cases referred to endoscopy for intestinal biopsy.

Histological examination of duodenal samples showed severe villous atrophy (grade III/IV) in 36 patients. Of these patients, 34 had endoscopic markers suggestive of celiac disease. These were reduction in number or loss of Kerkring's folds (in 27), mosaic pattern (14), scalloped folds (12), and visibility of the underlying blood vessels (5). Endoscopic visualization of these markers had a sensitivity of 94%, a specificity of 92%, and a positive predictive value of 84%. Reduction in number, or loss of, Kerkring's folds was the most sensitive (76%) and specific (98%) single endoscopic change indicating celiac disease.

Duodenoscopy permitted diagnosis in three of four asymptomatic patients in a group of 24 first-degree relatives of celiac disease patients. We conclude that endoscopy of distal duodenum is a sensitive and specific indicator of celiac disease."

The "severe villous atrophy (grade III/IV)" Refers to the Marsh scale, it measures the severity of the villi loss. (One being the least, etc.)

kasia Rookie

Hi everyone

Thank you for all your replies. After feeling like I was going to die this weekend (always was a drama queen), I started to eliminate gluten in my diet on Saturday, & now (on Tuesday) I feel remarkably better.

I've had a solid stool for the 1st time in about 6 weeks & it was a normalish colour. The nausea is getting better & I seem to be regaining a small appetite. Oh & I put on a lb, after losing 12! I'm still absolutely shattered, but for the first time in weeks there is a light at the end of the tunnel.... so many thanks. (I had my biopsy & bolod tests taken last week, so should be OK to be gluten free, & even if they both come back negative, you'll have to drag me back to pasta kicking & screaming!).

Nancy - I also have a 4 year old & 2.5year old, so will watch out for the play dough!

Take Care

Kate


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



Celiac.com Sponsor (A8-M):



Nantzie Collaborator

I'm so glad you're feeling better! It's amazing isn't it?

:D

Nancy

Sissy Rookie

Hi everyone, I'm Sissy, a newbie. :) Please don't take this wrong, but I am so happy to see so many of you here. I have had symptoms for several years and just did not know what it was. My aunt is a diagnosed Celiac, I knew this and it just did not occur to me. One day a few weeks ago after about 2 weeks into a particulary vicious edisode it hit me like a ton of bricks that maybe I had Celiacs... I went to the computer immediately and reseached everything I could, then I went on a gluten free diet and felt better within a few days...until I ate some candy corn that I thought seemed safe from the label and the bathroom race was on again. I live in a rural area of Oklahoma so did my homework before I went to the doctor armed with tons of internet research expecting ignorance or resistance from her...what a relief, she was very informed on Celiacs and has several other Celiac patients...I am waiting for my blood work to come back. I am still feeling weak and tired and have some other syptoms as well. I am so happy to have found this board. Sissy

chewymom Rookie

Kate,

You may already be pretty sure it is celiac, based on dietary response and the replies here. But here's another thought to consider. I once had giardia, and its onset was really similar to what you desribed. Anyway, just something else to consider! I hope you find a definitive answer soon!

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. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

    3. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    4. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
×
×
  • 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.