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

How Do I Know If I Really Have Celiac?

chrismilne

Recommended Posts

chrismilne Newbie
chrismilne
Posted

Have no idea if i really have Celiac...some backgrround:

I was having all kinds of stomach problems, and after every test under the sun the only thing positive was one Celiac test and a Hydrogen Breath Test. So i was put on Xifaxin (spelling?) and started a Gluten Free Diet. I saw no improvement for a month or so and slowly started to feel a bit better. I have now started feeling worse again (i have an appt with a new GI dr in a week+). From dec 25-jan 7 i was overseas and it was too difficult to follow a gluten free diet (no one has heard of it and the foods just don't match). So I finally gave up and when i got home immediately went back on the diet. It's now been 2 weeks since back on the diet and teh past few days is when i started feeling worse again. In the mean time I went to my general Dr who did another Celiac Panel and a check for Lupus (ANA) and some vitamin levels. Everything came back normal (or negative, INCLUDING Celiac) except low Vitamin D (not that low though).

Now the question is did i ever have Celiac? My general Dr said there are false positives or it could be a result of being gluten free for a few months (but i was only truly gluten free again for about a week prior to the blood test since the 2 weeks before that I was overseas and not on the diet).

I'm at a loss, i hope the new Dr has some ideas...i will also ask to be checked again for SIBO but it seems that is a difficult condition to accurately diagnose (as it can be Celiac).

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Have no idea if i really have Celiac...some backgrround:

I was having all kinds of stomach problems, and after every test under the sun the only thing positive was one Celiac test and a Hydrogen Breath Test. So i was put on Xifaxin (spelling?) and started a Gluten Free Diet. I saw no improvement for a month or so and slowly started to feel a bit better. I have now started feeling worse again (i have an appt with a new GI dr in a week+). From dec 25-jan 7 i was overseas and it was too difficult to follow a gluten free diet (no one has heard of it and the foods just don't match). So I finally gave up and when i got home immediately went back on the diet. It's now been 2 weeks since back on the diet and teh past few days is when i started feeling worse again. In the mean time I went to my general Dr who did another Celiac Panel and a check for Lupus (ANA) and some vitamin levels. Everything came back normal (or negative, INCLUDING Celiac) except low Vitamin D (not that low though).

Now the question is did i ever have Celiac? My general Dr said there are false positives or it could be a result of being gluten free for a few months (but i was only truly gluten free again for about a week prior to the blood test since the 2 weeks before that I was overseas and not on the diet).

I'm at a loss, i hope the new Dr has some ideas...i will also ask to be checked again for SIBO but it seems that is a difficult condition to accurately diagnose (as it can be Celiac).

I don't think the two weeks back on gluten, followed by two more weeks off gluten, would be sufficient to reactivate sufficient antibodies to measure on the blood test. Just the two weeks off, alone, would be enough to invalidate it and two weeks on not long enough. I would have expected the results to be negative myself. They say you need to be eating the equivalent of four slices of bread (maybe more depending on your weight) for at least 6-8 weeks for the testing to be valid. Which original celiac test was positive, what was the value and the lab range? If you could get a copy of your results and post them here it might help in offering you an opinion.

Once you test positive for celiac it doesn't change. You want future tests to be negative because it shows the diet is working. The fact that you felt better gluten free is a good indicator in and of itself. Your low level of Vit.D is also common in celiacs. Did you find out if the new GI doctor is knowledgeable about celiac disease? This is important because so many of us have gone from doctor to doctor, fruitlessly, because they all had very antiquated ideas about it or did not even think of it as a possibility.

sandsurfgirl Collaborator
sandsurfgirl
Posted

I'm not expert, but everything I have read has said that you don't really get false positives on the celiac blood tests. It's much more likely to get a false negative, especially if you have been on a low gluten diet or did a gluten free diet for a period of time.

I'm not sure I trust the knowledge base and level of your doctor regarding this issue.

woodnewt Rookie
woodnewt
Posted

Have no idea if i really have Celiac...some backgrround:

Now the question is did i ever have Celiac? My general Dr said there are false positives or it could be a result of being gluten free for a few months (but i was only truly gluten free again for about a week prior to the blood test since the 2 weeks before that I was overseas and not on the diet).

I'm at a loss, i hope the new Dr has some ideas...i will also ask to be checked again for SIBO but it seems that is a difficult condition to accurately diagnose (as it can be Celiac).

I do not know about false positives with the blood test, but as far as I know the biopsy is the only way to be 100% sure. You would need to consult a gastroenterologist. It is really important to know if you do have celiac or not, because the gluten free diet is something you are going to have to adhere to strictly and for life. Also, if it is something else making you ill and not celiac, you need to be diagnosed properly and treated.

Are you still consuming gluten? If so the biopsy would be the best way to know.

sandsurfgirl Collaborator
sandsurfgirl
Posted

I do not know about false positives with the blood test, but as far as I know the biopsy is the only way to be 100% sure. You would need to consult a gastroenterologist. It is really important to know if you do have celiac or not, because the gluten free diet is something you are going to have to adhere to strictly and for life. Also, if it is something else making you ill and not celiac, you need to be diagnosed properly and treated.

Are you still consuming gluten? If so the biopsy would be the best way to know.

Actually the biopsy isn't 100% either unfortunately. The doc has to take enough samples to get the damaged tissue. You also have to be consuming enough gluten for it to be positive.

chrismilne Newbie
chrismilne
Posted
  • Author

thanks for the replies. I have been back on the gluten free diet. I have an appt with a new dr on monday (someone recommended from the someone on the board). If i still don't feel confident there is a celiac research place in baltimore, md i think which is drivable if i take a lot of time off work for that day.

I will update you with what the Dr suggests for the next step.

sandsurfgirl Collaborator
sandsurfgirl
Posted

thanks for the replies. I have been back on the gluten free diet. I have an appt with a new dr on monday (someone recommended from the someone on the board). If i still don't feel confident there is a celiac research place in baltimore, md i think which is drivable if i take a lot of time off work for that day.

I will update you with what the Dr suggests for the next step.

Good luck! No matter what, the tests we use are just not that reliable unfortunately. You have to get what testing you are willing to endure and then ultimately make up your own mind in my opinion. Read enough people's stories and you'll see that it's just plain complicated.

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

Celiac.com Sponsor (A8-M):


Reba32 Rookie
Reba32
Posted

where exactly "overseas" where you? From everything I've read every single European country is far more cognizant of Celiac Disease than the US or Canada are. I would find it hard to believe that it's never been heard of.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,692
    • Most Online (within 30 mins)
      7,748
    Linda M Rush
    Newest Member
    Linda M Rush
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Since 2015 we've spent extensive time in Italy and I've been able to eat their wheat products without incident. Initially, I was practically starving thinking foods in Sicily were not gluten-free.  An Italian friend who had lived in the US for over 20 years said she had celiac/gluten-free friends from the US who could eat Italian wheat products without problems. Hesitantly, I tried little by little without issues.  A few years later at a market, I asked a bread vendor if they had gluten-free loaves. Turns out she had lived in LA, said groups believe it's not the gluten that's causing our bodies harm, but potassium bromate; these groups have been trying to ban it.  Bromines and other halogens wreaks havoc to our endocrine system and, more specifically, our thyroids and immune systems. When bromines are ingested/absorbed into the body, it displaces iodine causing other health issues. Potassium bromate is a powerful oxidizing agent (dough 'conditioner') that chemically changes flour to enhance elasticity, bleaches the dough, and ages the flour much faster than open air.   Shortly thereafter while visiting friends in California, one family said they had gone gluten-free and the difference was incredible. The reason they choose this path was due them (a biologist/chemist/agriculturist scientist) having to write a portion of a paper about a certain product for the company he worked. Another company's scientist was directed to write the other portion. All was confidential, they weren't allowed to know the other company/employee.  After the research, they learned gluten was being removed from wheat, sent elsewhere, returned in large congealed blocks resembling tofu, and then added to wheat products. Potassium bromate has been banned for use in Europe, China, and other countries, but not in the US. Then we have the issues of shelf preservatives and stabilizers. What are we eating?  Why? We spend long periods of time in Italy and all has been good.  We just returned from an extended time in Greece;  no issues there either.  There is a man there we learned about on a travel show about Greece who walks the hills, picking herbs, pods, etc.  He is a very learned scholar, taught at the university level in Melbourne. It took a few days to locate him, but were finally successful. He too, is concerned about the additives and preservatives in American food (many of his customers are Americans, haven't been in the best of health, and have become healthier after visiting him). He suggested taking a food product from the US and the same product in Europe, and compare the different ingredients. Then ask why these things are being allowed in the US by the 'watch dog' of our foods and drugs. It would be amuzing if it weren't tragic. I'm presently looking for flour from Europe that I can make my own bread and pasta as the gluten-free bread is now $7.99 a (small) loaf.  BTW, studies are showing that many gluten-free individuals are becoming diabetic. My guess is because the gluten-free products are high in carbs. This is only my experience and opinion garnished by my personal research.  I hope it helps.  
    • knitty kitty
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By knitty kitty · Posted

      Symptoms that get worse if you don't supplement is a sign of malabsorption, possibly due to Celiac disease. Blood tests for nutritional deficiencies are not very accurate, and should be done when you have been off of supplements for eight to twelve weeks, otherwise the vitamin supplements you've taken will be measured.  The blood circulation system is a transportation system.  It transports the vitamins you've absorbed around the body, but blood tests don't give an accurate picture of the vitamin and mineral stores inside organs and tissues where they are actually used.  You can have "normal" blood levels but still have deficiencies.  This is because the brain demands stored nutrients be put into the blood stream to supply important organs, like the brain and heart, while other organs do without.   If you are taking Thiamine Mononitrate in your supplements, you are probably low in thiamine.  Thiamine Mononitrate is used in many supplements because it won't break down sitting on a shelf.  This also means Thiamine Mononitrate is difficult for the body to utilize.  Only thirty percent of Thiamine Mononitrate on the label is absorbed and even less is able to be utilized by the body.  A different form of Thiamine called Benfotiamine has been shown to promote intestinal healing.   Talk to your doctor about doing a genetic test to look for Celiac markers.   I'm concerned that if you do a gluten challenge (10 grams of gluten per day for a minimum off two weeks) in your weakened state, the nutritional deficiencies will become worse and possibly life threatening.  
    • ElisaAllergiesgluten
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By ElisaAllergiesgluten · Posted

      Hello, good afternoon!   I apologize, I didn’t see a notification and I’m just reading this. Thank you so much for sharing your thoughts and the link. Yes you are absolutely right, even so trying to get a response from them has been extremely difficult. They don’t answer but I will your practice of “guilty until proven innocent.”   I like and have a sense of trust here in this website, everyone is honest and thoughts are raw. The mutual understanding is amazing!   thank you Scott!
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
×
×
  • 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.