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. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    2. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    3. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    4. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748
    Jadelucia
    Newest Member
    Jadelucia
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.