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?

bacon pants

Recommended Posts

bacon pants Newbie
bacon pants
Posted

Based on the following symptoms, I was tested for celiac disease:

-diarrhea

-bloating

-irritability

-depression

-headaches

-joint pain

-itching

-lack of energy

-recurrent miscarriage

....aaaand the blood test says no. My question is, is it worth pursuing with my doctor? He seems to think that if the blood test is negative, that's all there is to it.

I went gluten-free for a few months last year, before going back on the gluten to get tested. I felt so much better! My stomach felt fine, I wasn't feeling like I was slogging through molasses all day. I've felt like that all my life, so it was weird (but great) to see what it felt like NOT to be that way.

Any thoughts?

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

Celiac.com Sponsor (A8-M):


Mother of Jibril Enthusiast
Mother of Jibril
Posted

Welcome to the group!

Did you get a photocopy of your results? If yes, could you post the numbers and the reference ranges? Sometimes (for a variety of reasons) you can be told "negative" when you actually DO have a problem with gluten. If you don't have a photocopy... go get one! It's your right as a patient.

In the meantime... if you're still eating gluten, you probably want to keep doing it until all the testing is complete. Otherwise you can get a false negative.

Salax Contributor
Salax
Posted

If it's not Celiac, perhaps it's Gluten Intolerance. Since, you seem to feel better not eating gluten...I would say it's one or the other.

modiddly16 Enthusiast
modiddly16
Posted

my piece of advice is, if the blood test said no but a gluten-free diet made you feel better....go back on the gluten free diet!! you don't get the official "you have celiac disease" bumber sticker but you will feel better :)

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

My tests were negative too. When my tests came back negative I was angry becasue I wanted a black and white, on paper diagnosis. I went to an allergist for a second opinion and she diagnosed me with gluten intolerance. Now, one year later, I realize that I don't need a black and white, on paper diagnosis of Celiac. I feel so much better now and I know my body better than anyone. Perhaps if you went to a different type of doctor they could help you. I felt like my allergist really listened to me and spent much more time with me than my primary doctor.

Foxfire62 Newbie
Foxfire62
Posted

Only biopsy can determine 100%. Go on a gluten diet and get a biopsy. I think you'll need to be on gluten for at least 2 weeks.

Good luck!

bacon pants Newbie
bacon pants
Posted
  • Author

Thanks for all of your input!

I had heard that the blood test is less effective if you have had celiac for a long time - is that true? I have had these symptoms for ages, so if I am a celiac, that would help to explain it.

I don't know what the range was on the blood test, but I will talk to my doctor and get a copy.

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

Celiac.com Sponsor (A8-M):


leadmeastray88 Contributor
leadmeastray88
Posted
I had heard that the blood test is less effective if you have had celiac for a long time - is that true? I have had these symptoms for ages, so if I am a celiac, that would help to explain it.

I have never heard of that before, someone will correct me if I'm wrong, but I believe the testing is more prone to be correlated with the years of damage (more likely to be positive the longer you've had damage). However, the testing is far from where we'd like it to be, in terms of accuracy and reliability. We've had biopsy-diagnosed Celiacs here who had completely negative blood tests. So yes, it is definitely possible to have Celiac without the positive blood work.

In my honest opinion, you have the proof that the diet works for you. Unless you need an absolute diagnosis, I would say just to go for it! :)

bacon pants Newbie
bacon pants
Posted
  • Author

Is there any value to a concrete diagnosis? I am planning to go gluten-free no matter what, since I felt so much better, but I was wondering if a firm diagnosis of celiac would make a difference.

Also, leadmeastray, I noticed in your sig that you suffered from hyperhidrosis prior to going gluten-free. HH has been a huge problem for me all my life, and I would LOVE to see it go away! Did the gluten-free diet make a difference?

leadmeastray88 Contributor
leadmeastray88
Posted
Is there any value to a concrete diagnosis? I am planning to go gluten-free no matter what, since I felt so much better, but I was wondering if a firm diagnosis of celiac would make a difference.

Also, leadmeastray, I noticed in your sig that you suffered from hyperhidrosis prior to going gluten-free. HH has been a huge problem for me all my life, and I would LOVE to see it go away! Did the gluten-free diet make a difference?

The value of a concrete diagnosis depends on the person. The most important thing is that you're going to stay loyal to the gluten-free diet. Lots of people can't/won't be faithful to the diet without a real diagnosis. But if you think you can stick to it without one, then definitely go for it!

Prior to going gluten-free, I had terrible hyperhidrosis. So badly that I would have to change shirts up to 3 times daily. My Celiac was triggered by the stress my body endured when I went through 9 hernia surgeries including one without anesthetic...very traumatic to say the least. So my body was stressed and that's what could have caused the hyperhidrosis. I don't know for sure that it was the gluten free diet that made it stop, but I know that my body is no longer under stress because I'm treating it properly and therefore the sweating stopped. I hope that helps!

Ed-G Newbie
Ed-G
Posted
Based on the following symptoms, I was tested for celiac disease:

-diarrhea

-bloating

-irritability

-depression

-headaches

-joint pain

-itching

-lack of energy

-recurrent miscarriage

....aaaand the blood test says no. My question is, is it worth pursuing with my doctor? He seems to think that if the blood test is negative, that's all there is to it.

I went gluten-free for a few months last year, before going back on the gluten to get tested. I felt so much better! My stomach felt fine, I wasn't feeling like I was slogging through molasses all day. I've felt like that all my life, so it was weird (but great) to see what it felt like NOT to be that way.

Any thoughts?

I believe you either have celiac or gluten intererance, but going om the gluten-free diet probably caused a false negative result. You can either go on the gluten diet for a few months in hopes of a positive test result or go gluten-free, forget about about testing, a feel a lot better.

Ed in MD

bacon pants Newbie
bacon pants
Posted
  • Author

I have one more question :)

When I was eating gluten-free, I was only eating *mostly* gluten-free. Like, I would avoid obvious sources of gluten but would sometimes unthinkingly eat it, in sauces and whatnot. I did not ever have a major reaction when I did so, or any reaction at all, really. So I was thinking, isn't that more indicative of wheat intolerance? If I am a celiac, wouldn't I have a bad reaction to any gluten, even if the diet was not consistently 100% gluten-free?

ravenwoodglass Mentor
ravenwoodglass
Posted
I have one more question :)

If I am a celiac, wouldn't I have a bad reaction to any gluten, even if the diet was not consistently 100% gluten-free?

Not always. There are people who are totally asymptomatic when diagnosed and seem to suffer no ill effects but the damage was still found. Doctors call them 'silent celiacs'.

  • 2 months later...
bacon pants Newbie
bacon pants
Posted
  • Author

Hello again everyone. I went through a second round of blood tests (related to the recurrent miscarriages) and my doctor noted that the immunoglobulin A result "could be consistent with celiac disease". The numbers are:

Result: Negative: 37 L mg/dL

Limits: Negative: 70-400

Not that I know what that means...but maybe you all do? :)

I am scheduled for a biopsy next month, so I am chowing down on the gluten for the time being, and boy does my stomach hurt....

happygirl Collaborator
happygirl
Posted

The IgA is not a test for Celiac, but people with Celiac have a higher rate of having IgA deficiency, which your doctor is indicating you have, based on your bloodwork. In addition, IgA deficiency leads to a inaccurate Celiac blood testing, which is why it is generally run at the same time as the Celiac blood tests.

Info can be found here: Open Original Shared Link

chasbari Apprentice
chasbari
Posted

I wouldn't chow down too much if I were you but rather keep some gluten in the diet if you are really concerned about the biopsy showing damage to the villi. It won't heal that quickly if you are still having exposure ...even just a tiny bit as it is not an issue of how much but rather that you have any. One advantage to getting a firm medical diagnosis is that if your gastro is competent they will follow up with other blood tests and bone density testing if it is apparent you have had celiac for some time. My primary was very willing to continue with biopsy even though my blood test was negative because my health history was so compelling otherwise. My biopsy was very positive and, as a result, they did all sorts of follow up to make sure the other issues (malnutrition, fat malabsorption, bone density) were properly addressed.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

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

      IBS-D vs Celiac

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

      Question

      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 mul...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    4. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

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

  • Member Statistics

    • Total Members
      133,321
    • 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

    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      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
      Question

      By Scott Adams · Posted

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

      By catnapt · Posted

      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
      IBS-D vs Celiac

      By trents · Posted

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

      By trents · Posted

      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.
×
×
  • 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.