Not Convinced I Have It

[smousie]

I recently had a blood test for something entirely unrelated, which showed I have celiac disease. I have no symptoms, have never felt ill or had diarrhoea or tummy aches, I have always eaten bread and pasta etc all the time and have never had any ill effects. The doctors have done the biopsy and said its inconclusive and they can't verify any celiac damage. But they've diagnosed me with celiac anyway to be on the safe side.

I don't get it! I have NO symptoms, NO ill effects from eating gluten, NO conclusive intestinal damage, and they've diagnosed me on the basis of a single blood test. Is it possible this blood test was wrong, or that whatever they found in my blood might be due to something else other than celiac? I don't see how I can have celiac when I have no symptoms and no intestinal damage.

[lovegrov]

Which blood test came back positive?

richard

[kbtoyssni]

Blood tests and biopsies have a high rate of false negatives, but there are no false positives. If you had a positive blood test, you've got it. Some people are asymptomatic. And some think they are until they go gluten-free and realize that there were lots of little things that weren't quite right that have no gone away. The other issue is that celiac might have been triggered very recently so you haven't had time to develop intestinal damage yet (which is a good thing! lucky you!). If you keep eating gluten, you will be at high risk for malnutrition, osteoporosis, cancer, neurological symptoms, etc.

[kbtoyssni]

What triggered your doctor to test you for celiac if you don't have any symptoms?

[jerseyangel]

Hi, and welcome to the board

I'm also wondering which blood test you had--normally, doctors don't test for Celiac unless there are symptoms or a family history.

Since it wouldn't show up in a CBC or a metabolic panel, I'm curious.

[Ridgewalker]

Wow, I bet you are shocked! For this to come out of left field...

However...

Have you looked at any symptom lists for Celiac yet? It's a common misconception that everyone with Celiac has diarrhea... It's actually a lot more variable than that. Here is the list available on this website:

* Diarrhea

* Constipation

* Steatorrhea (fatty stools that float rather than sink)

* Abdominal pain

* Excessive gas

* Any problem associated with vitamin deficiencies

* Iron deficiency (anemia)

* Chronic fatigue

* Weakness

* Weight loss

* Bone pain

* Easily fractured bones

* Abnormal or impaired skin sensation (paresthesia),

* Including burning, prickling, itching or tingling

* Edema

* Headaches*

* Peripheral Neuropathy* (tingling in fingers and toes)

Individuals have reported such varied symptoms as:

* White flecks on the fingernails

* Fuzzy-mindedness after gluten ingestion

* Burning sensations in the throat

In children, the symptoms may include:

* Failure to thrive

* Paleness

* Querulousness, irritability

* Inability to concentrate

* Wasted buttocks

* Pot belly with or without painful bloating

* Pale, malodorous, bulky stools

* Requent, foamy diarrhea

In addition to all of these, dermatitis herpetiformis, a disease in which severe rashes appear (often on the head, elbows, knees and buttocks) is related to celiac disease.

Reactions to ingestion of gluten can be immediate, or delayed for weeks or even months.

The amazing thing about celiac disease is that no two individuals who have it seem to have the same set of symptoms or reactions. A person might have several of the symptoms listed above, a few of them, one, or none.

Note that last line.

Other symptoms I've heard are:

* Frequent or chronic infections and viruses (due to compromised immune system)

* Dental problems

* Susceptibility for yeast infections, in particular

* Memory difficulties and general fogginess

If you have Celiac, whether you are currently symptomatic or not, you don't want to fool around with it. Celiac can affect every organ in your body. Undiagnosed/untreated Celiac can cause all manner of malnutrition issues, infertility, some types of cancer, osteoporosis, and many other problems.

If it's not too personal, what were you seeing the doctor for to begin with? More importantly, what blood test was performed? Celiac is commonly diagnosed by blood test, followed up by biopsy of small intestine. The inconclusive biopsy, however, is not unusual, as Celiac damage is patchy, not consistent across the surface. Multiple samples must be taken during a biopsy to increase accuracy.

I'd suggest doing as much research on this disease as you can. You may find that you have been having symptoms, and didn't realize it.

-Sarah

[stargazer]

Some people have Celiac with no symptoms, but the damage is still be done to their intestines. They are at greater risk of getting cancer later on because they let it go on for so long without knowing.

[Darn210]

My daughter recieved a diagnosis based on a positive blood test and an inconclusive biopsy. Her only symptom was acid reflux. They considered the biopsy inconclusive because they did not see damage to the villi. However, they did find that she had low iron and low protein and was having problems digesting sugars. Even though they didn't SEE the damage, they still could show issues with absorption. Do you know if they tested for any of these things?

If you don't know what all they tested for, call the doctor's office and ask for a copy of your lab results for both your blood test and endoscopy. I think its a good idea to have on hand anyway. You also have the right to request a second opinion even if it's just to help you come to terms with your diagnosis. I know we needed to do that - the diagnosis for my daughter came out of the blue.

[smousie]

I was feeling slightly light-headed so my doctor did a blood test for anaemia. She just ticked all the boxes on the blood test sheet, just to be on the safe side, including the celiac box. Imagine my surprise when the test came back positive for celiac! I turned out not to be anaemic, the light-headedness seems to have been due to stress.

I don't have any of the symptoms a previous poster mentioned, I feel 100% healthy. I've been on a gluten free diet since the diagnosis and haven't noticed any changes or improvements in my health. I'm due to be reviewed by the doctor next week and I just feel like this is all a waste of time - this gluten free diet is making no difference to my wellbeing and is a pain in the ass, the biopsy didn't even show any intestinal damage so I don't see what's being accomplished by treating me for something I have no symptoms of.

I disagree with the idea that false positives don't happen - there have been many cases of individuals thinking they have an illness and discovering later that the test was wrong they don't actually have it. I feel that in the absence of any other evidence for celiac they should repeat the blood test, but they've refused, so confident are they in their new fangled lab tests that are NEVER wrong.

[Ursa Major]

Do get a copy of the blood test results. Who knows what at your lab they consider a celiac disease blood test. In order to get an accurate diagnosis there are five tests for celiac disease as far as I know. If they didn't do them all, then you may be right.

Besides, there could have been a mix-up of your blood with somebody else's. It happens. Can you go to another doctor to get another blood test ordered?

If you really want to be sure (and have the money), you can get tested by Open Original Shared Link.

[jerseyangel]

I was feeling slightly light-headed so my doctor did a blood test for anaemia.

Thanks for the clarification.

You actually did have a classic symptom of Celiac, which is anemia. I had that, too, for years along with other symptoms that were always attributed to other things.

It was only when I began to lose weight, have constant D, felt tingling and had numbness in my face, arm and legs, had horrible bruising, etc that I was tested for Celiac--and I had to bring up the possibility to the doctor.

I think you have a very astute doctor and that you are very lucky to be diagnosed before the disease had a chance to cause some of these other problems for you. It's much more difficult to heal when you go undiagnosed for a long time.

If you still question this, I would suggest you tell your doctor (or another doctor, if they stll refuse) you want the full Celiac panel run again --

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

[aikiducky]

Patti, she seems to have turned out not to have anemia. It was in the later post.

I do think it sounds like a good case for a second opinion. No test is 100% certain, even if the margin of error is just a couple percent there still are going to be people who get a false positive. No symptoms + no change on the diet + no intestinal damage detected - pretty good chance that it actually was a false positive. At least it warrants further investigation...

Pauliina

[Ursa Major]

I turned out not to be anaemic

Patti, you overlooked the 'not' here.

But it would be good to know if the full celiac disease panel was run, that is why it is essential to get a copy of the results for yourself, smousie.

Unless the full panel was run, which is what Patti posted

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

it is really questionable if you have celiac disease.

It is weird, most doctors refuse to diagnose just on the grounds of blood tests, but expect at least a positive dietary response (which is reasonable), and this one thinks you MUST have it, based on one test.

I agree with Pauliina.

[jerseyangel]

Thanks, Paulina and Ursula--I missed it completely!

And I agree with you both about the second opinion

[gfpaperdoll]

Smousie, new blood work could also tell if you have really been successful on the gluten-free diet. Some think they are gluten-free but really are not. Also, if the diet makes you unhappy then that in itself is a risk factor. I do not advise this for very many people but if you really are unhappy gluten-free then just eat gluten & be happy. The gluten-free diet makes me very healthy & happy. I want to live every moment of my life to the fullest. If I have an accident & do not live to a ripe old age then i am happy that my last day was a healthy happy one.

you did not give your age, but I would think you are young & this was caught before you have damage. So educate yourself on the risks & if you want to take a chance on cancer or another auto immune illness that shows up before any other noticeable damage shows up - I say go for it, while you can...

If I were you I would at least get the enterolab.com tests including the gene test. I spent years thinking that I "just" had a what allergy before I found out about gluten 3+ years ago. I now only have the sight in one eye, plus all the damage my body suffered... At least you will not be able to say that you did not know - like I do. I am 60 now, & I know that to a young person that may sound ancient... I lost my eyesight 10 years ago...