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Could I Have Celiac?

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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?

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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.

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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.

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