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Inconclusive Tests

glutenewbie

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glutenewbie Newbie
glutenewbie
Posted

Hi everyone,

I'm new to this Celiac forum. I've been having major symptoms for the past 6 mos. But I've struggled with mood disorders and joint pains for years that could be related. I started off having diabetic like symptoms. I was really lightheaded and thirsty all the time. I had a glucose tolerance test and found I had kind of high blood sugar, but not diabetic. So I started cutting back on sugars, and found that that was my problem, I was sugar intolerant. But even after cutting out all refined and cane sugars (and eating minimal fruit) I was still having problems. I started having digestive difficulties (diarrhea, etc.) a couple months ago. I've read that gluten intolerance can lead to other food intolerances. (I also have problems with dairy and eggs.)

My GP finally did a blood test for me for Celiac in June. It came back positive. Then I was referred to a GI doctor who scheduled me for an endoscopy and biopsy. I tried to load up on gluten 2 weeks before the test, but had been cutting back on it before then. My biopsy came back negative. So the docs can't confirm that I have Celiac. But I know that I was feeling a lot worse when I had to load up on gluten. The tingling and weakness started coming back in my right foot again, I felt like I had the flu since I was so weak.

So anyway, I was just wondering if it's still possible that I could have Celiac even though my biopsy was negative? Any advice would be helpful!

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GlutenWrangler Contributor
GlutenWrangler
Posted

Absolutely. If you had positive blood tests, you are a Celiac. You don't need a positive biopsy to be diagnosed. The blood tests are very specific to Celiac Disease. A negative biopsy just means the damage isn't visible yet. But the antibodies are in your blood, and that is enough. You should definitely take this as a diagnosis and begin your Gluten-Free lifestyle. Good luck.

-Brian

*lee-lee* Enthusiast
*lee-lee*
Posted

that's exactly what happened to me...i don't have the official diagnosis but i'm slowing coming around to realize it doesn't matter. i'm gluten free and feeling better every day.

this forum is a fantastic resource - search around, ask questions, don't be shy! you'll find that many people on here know more about Celiac than most doctors do.

if you're looking for a good book on the disease, try "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green is also a great source of info. i read it as soon as i suspected Celiac.

good luck and start your gluten free diet right away! stick with simple, naturally gluten-free foods at first. you may also need to cut out dairy for a few months until you heal.

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the gluten free family. As stated if your blood test was postive you should get on the diet. You found a great place to ask any questions you need to. I hope you heal quickly.

glutenewbie Newbie
glutenewbie
Posted
  • Author

My GI doc told me that 1 out of 5 people test positive for the Celiac antibodies, but don't have the disease. He says the blood tests aren't 100% accurate. Should I believe him? I'm going gluten free anyway, but I'd like a confirmed diagnosis. I don't think I can afford the enterolab tests.

nora-n Rookie
nora-n
Posted

Some doctos say a positive antigliadin test may be inconclusive, but a positive tissue transglutaminase, or endomysium antibody test are very very specific.

Even the antigliadin test does mean you are gluten intoleranet, and new research that followed relatives of diagnosed celiacs shows that the antigliadin test is the firstst to be positive, and that after some years the ttg test will be positive.

Why wait some years to ruin your health?

And, about 40 % of the population are gluten intolerant, not just the 20% your doctor comments on.

You can always get the gene test and the fecal test for gluten intolerance done by enterolab. but they cannot diagnose celiac.

Dr. Ford on the antigliadin test (the one your doctor says means nothing....) :

Open Original Shared Link

nora

ravenwoodglass Mentor
ravenwoodglass
Posted
My GI doc told me that 1 out of 5 people test positive for the Celiac antibodies, but don't have the disease. He says the blood tests aren't 100% accurate. Should I believe him? I'm going gluten free anyway, but I'd like a confirmed diagnosis. I don't think I can afford the enterolab tests.

Your GI is only considering the end stage of total villi destruction to be diagnostic. Even though biopsies are often a false negative. If he biopsied the wrong place the damage can be missed as it can be spotty in the beginning and you do have 22 ft of small intestine. The likely reason for 1 in 5 testing postive is that 1 in 5 are celiac but just haven't gotten to that end stage yet or have other systems that are being destroyed faster than the gut. I am so glad you have decided to just go gluten free and regain your life. You don't need a doctors permission for that.

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ShayFL Enthusiast
ShayFL
Posted

So you feel better off gluten, felt worse loading up on it and according to your GI Doctor have a 20% chance of not having it with a POS blood test. That means you have an 80% chance of having it. Look at your results and the odds.....you gotta ask yourself......Do I feel lucky?

Because if you choose to keep eating gluten and you are Celiac......you are asking for a lots of other health issues as you go.....thyroid, diabetes, cancers......

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    • trents
      SkinSafe

      By trents · Posted

      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
    • Itsabit
      SkinSafe

      By Itsabit · Posted

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    • trents
      I’m terrified it’s too late for me😭

      By trents · Posted

      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’m terrified it’s too late for me😭

      By Cathijean90 · Posted

      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
      diagnostic testing variance

      By trents · Posted

      Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge.  Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.
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