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

Do You Think I Am Celiac?


Sparkle1988

Recommended Posts

Sparkle1988 Rookie

Hi everyone am new!

My symptoms started a few years back and they have just gradually got worse - feel like rubbish everyday now. Here are my symptoms:

Diarrhea

Constipation

Bloating

Stomach cramps

Indigestion

Gas

Heartburn

Joint pains

Fatigue

Muscle cramps

Headache

Feeling lightheaded

Lack of concentration

Anaemia - low iron and b12

I had a blood test for celiac which came back negative. I'm now waiting on a biopsy appointment. What do you all think?

Thanks


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



Celiac.com Sponsor (A8-M):



MySuicidalTurtle Enthusiast

There are loads of symptoms for Celiac disease and those are some of them. Have you tried not eating gluten?

Sparkle1988 Rookie
There are loads of symptoms for Celiac disease and those are some of them. Have you tried not eating gluten?

A couple of symptoms I forgot to put on my first post are: breathlessness (tightening feeling in throat and chest), swollen gland in my neck which has been there for over 2yrs (the doctors dont know why its been there so long as apparantly its just an indication that I am 'run down'), I also have itchy skin which really annoys me - especially at night.

I have been going to the doctors with those symptoms for around a year and they told me I have IBS. All of the tablets they gave me for IBS have not helped me. I dont know what everyone else thinks, but I think IBS is just something you are told you have if the docs dont actually know why you are feeling that way.

I've never cut gluten out before but the doc says to keep eating it the now as I have a biopsy coming up in the next couple of months.

By the way, how common are negative blood tests in people with celiac? I'm not sure exactly what tests I had for celiac but as I said before, they came back negative.

Thanks for your help.

QueenOfPain Rookie

Yes, I agree that doctors throw out an IBS diagnosis everytime they're stumped. It sounds like gluten could be the culprit for you. Definitely keep eating gluten if you're going to have the endoscopy. It is possible to have a false negative on the blood test. It is also possible to have a false negative biopsy. (Which is what happened in my case.)

I would suggest that if your biopsy comes back negative, and your doctor can't come up with any other explanation for what is troubling you... just try the gluten-free diet. It was hard at first, especially since I went through the withdrawal (my GI symptoms actually got worse). But about 3 months later I started feeling so much better. My blood tests had been coming back postive and after going gluten-free it came back negative. I'm so glad I stuck with my "gut" instinct and ignored my doctor in the beginning.

Sparkle1988 Rookie
Yes, I agree that doctors throw out an IBS diagnosis everytime they're stumped. It sounds like gluten could be the culprit for you. Definitely keep eating gluten if you're going to have the endoscopy. It is possible to have a false negative on the blood test. It is also possible to have a false negative biopsy. (Which is what happened in my case.)

I would suggest that if your biopsy comes back negative, and your doctor can't come up with any other explanation for what is troubling you... just try the gluten-free diet. It was hard at first, especially since I went through the withdrawal (my GI symptoms actually got worse). But about 3 months later I started feeling so much better. My blood tests had been coming back postive and after going gluten-free it came back negative. I'm so glad I stuck with my "gut" instinct and ignored my doctor in the beginning.

Hi

I will wait for my biopsy, then maybe try the gluten free diet maybe even before I get my test results back. I was wondering, if you are one that has symptoms of diarrhea usually once or twice a day and also regular constipation, is it normal to have some days or weeks where you don't get diarrhea and sometimes dont get constipation? I have had constipation a few times in the last week but no diarrhea at all which is great! All my other symptoms have stuck during this time though.

I'm just clueless as to whether it could be Celiac or not. Is it possible to have it when no-one in my family (as far as I know) has been diagnosed with Celiac? There are a couple of people in my family who have 'IBS' but have had negative blood tests for celiac (they haven't had biopsies).

Thanks

QueenOfPain Rookie

As for the symptoms--I didn't experience a lot of constipation (except for in the beginning when I was a kid.) As for the diarrhea, it would come and go. I might have a good week and then have a bad week or a bad month. I wouldn't usually have diarrhea every single day, but when I did it was bad. I might have to run to the bathroom four or five times. =(

And yes, it is possible for you to have it even though no one else in your family has been diagnosed. My dad told me that there have been many people on his side of the family that have had gastrointestinal problems, but no one has ever mentioned Celiac. In fact, his sister has been diagnosed with IBS. (But I suspect she might really have Celiac.)

If you do decide to try out the gluten-free diet keep in mind that some people go through withdrawals in the beginning. My gastro symptoms actually got worse after I began. It took 3 months for me to feel better. Best of luck to you! Hang in there!

Sparkle1988 Rookie

Well I suffer both diarrhea and constipation (mainly diarrhea), but ive had a good couple of weeks as ive had no diarrhea and only constipation a few times. Most of the time diarrhea does bother me but like you were saying, I get good weeks where I don't get it at all.

My aunt has the exact same symptoms as me (minus the diarrhea), so I think she is going for the biopsy at some point as well. I can't wait to get mine done, just want to know! It would be great to be able to go out for meals and nights/days out and not worry about how ill I might feel.

Also, what exactly happens during the biopsy? Is the anesthetic an injection? I hate injections so I'm a bit worried about that, but I don't want to have just the throat spray on it own.

Thanks


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



Celiac.com Sponsor (A8-M):



QueenOfPain Rookie

They performed an endoscopy and a colonoscopy at the same time with me--so they had me knocked out for the whole procedure. I want to say they had me hooked up to an IV and maybe they delivered the anesthesia through the same line... I can't remember--it was a year ago. It wasn't too bad. And after they were finished I was just kind of groggy and tired the rest of the day--no biggie.

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 catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

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

    2. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    3. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

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

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

    bttyknight83
    Newest Member
    bttyknight83
    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
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • 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.
×
×
  • 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.