Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Do I Have celiac disease Or Not?

GPPizza420

Recommended Posts

GPPizza420 Newbie
GPPizza420
Posted

I'm sure you all have a similar story, or maybe not, but either way, here's mine, hopefully someone has some advice on the issue. I have been very ill for the past year and a half, including but not limited to extreme weight loss, chronic diarrhea, bloating, cramping, malnutrition, etc. I have had every test under the sun performed: colonoscopy, upper endoscopy, CAT scans, MRI, blood work left and right, ultrasounds, etc. And here's the kicker, I'm 23 so everyone thinks I'm just a hypochondriac or something. Well finally, my P.A. decided to run a blood test for celiac disease. He said it came back POSITIVE for celiac disease antibodies or something. Well when I took this (good news, it helps to know WHAT is wrong with you regardless of what it is when you suffer for so long from a mysterious cause) news to my G.I. doctor he tells me he won't approve or recognize the results, that the antibody tests mean nothing. I had a biopsy of my inards somewhere and it was inconclusive. So what gives? I was told to try the gluten-free thing for three months, I've been gluten free for 3-4 weeks now and I feel great. I haven't felt this great in almost 2 years. Someone help.

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

Celiac.com Sponsor (A8-M):


ENF Enthusiast
ENF
Posted
I'm sure you all have a similar story, or maybe not, but either way, here's mine, hopefully someone has some advice on the issue. I have been very ill for the past year and a half, including but not limited to extreme weight loss, chronic diarrhea, bloating, cramping, malnutrition, etc. I have had every test under the sun performed: colonoscopy, upper endoscopy, CAT scans, MRI, blood work left and right, ultrasounds, etc. And here's the kicker, I'm 23 so everyone thinks I'm just a hypochondriac or something. Well finally, my P.A. decided to run a blood test for celiac disease. He said it came back POSITIVE for celiac disease antibodies or something. Well when I took this (good news, it helps to know WHAT is wrong with you regardless of what it is when you suffer for so long from a mysterious cause) news to my G.I. doctor he tells me he won't approve or recognize the results, that the antibody tests mean nothing. I had a biopsy of my inards somewhere and it was inconclusive. So what gives? I was told to try the gluten-free thing for three months, I've been gluten free for 3-4 weeks now and I feel great. I haven't felt this great in almost 2 years. Someone help.

I think that this "doctor", and I use that term loosely, is very wrong - but many of us have had similar experiences. I think that you should dump him. If he's really a G.I. and hasn't gotten the Celiac message by now, he's a lost cause. There are many similar stories here, including my own.

The antibody test results, when positive, are almost 100% proof that you have Celiac Disease. If your endoscope exams were not for Celiac, the chances are that even if there is villi damage, you would not be diagnosed.

You could stay on the dietary path (gluten-free of course) you've been on, and get further testing via endoscope in the near future (at a competent practitioner) or go the Enterolab route. I

Guest cassidy
Guest cassidy
Posted

If you have a positive blood test for celiac then you have celiac. If you have a positive dietary response to a gluten-free diet, then you need to be gluten-free and you likely have celiac or gluten intolerance. I'm so happy for you that you have found something that is finally making you feel better and you can put a name to it.

There are so many ignorant doctors out there that are giving patients bad advice. Unfortunately, your doctor is wrong and you can either find another one, or just handle the diet yourself since you really don't need to be monitored or take medication for celiac.

Please don't let anyone convince you to go back on gluten, or that you are crazy or any of the other things that most of us have been through. You are one of the "lucky" ones that actually has positive blood work which can be used to make an official diagnosis. My bloodwork was negative but I feel like a new person on the diet. I'm not sure if I have celiac or gluten intolerance or what, and I go back and forth between wanting genetic testing or something that will give me a definite answer and not caring at all because I feel so great.

Hope things keep going well for you. Trust your body and the results the diet has given you and don't listen to that crazy doctor.

GlutenWrangler Contributor
GlutenWrangler
Posted

You definitely have it.

Lisa Mentor
Lisa
Posted

Yes, I agree with everyone else.

If you see health improvement by going gluten free, then, by all mean continue.

And additional note, please make sure that you personal products are gluten free as well. This includes lotions, lipstick (gender related), toothpaste and shampoos. If you need some safe product information to start you on your way, please ask.

So glad that you are doing well.

Archived

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

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


  • Member Statistics

    • Total Members
      130,816
    • Most Online (within 30 mins)
      7,748
    Tanya Moore
    Newest Member
    Tanya Moore
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • lookingforanswersone
      TTG IgA 0.30 U/ml: further tests?

      By lookingforanswersone · Posted

      Hi, a query about testing. Background: I have existing diagnosis of pernicious anaemia (b12 deficiency) autoimmune condition. Diagnosed 5 years ago.  Symptoms for 10 years. Initially got better with b12 shots (for like a month or so) but still kicking around. So query Celiac and other clustered autoimmune conditions to PA. If celaic it would maybe be more silent as don't get vomiting, diarrhea or weight loss. Symptoms = chronic fatigue. Muscular&skeletal pain. Hot hands and feet (worse an night), nausea after eating, tiredness after consuming food like bread and pasta.  Celiac screen came back (private blood test): TTG IgA 0.30 U/ml.  My main question is, is it worth getting total iga for further testing ? I have been advised that 'low' would only count as 0 U/ml for TTG IgA not .3.  Oh and did the genetic testing and have the gene thing. Was also critically low for folate levels in recent tests  All other tests showed no likelihood of other autoimmune conditions like thyroid (luckily). Anyhow, any thoughts welcome but be kind, just trying to get well l.
    • Scott Adams
      Gluten free Areds 2 Vitamins

      By Scott Adams · Posted

      It looks like they are naturally gluten-free, but not labeled gluten-free. It's unlikely that they contain any gluten, but not impossible. This is the one I looked at: https://www.preservision.com/areds-2-formula-minigels/
    • Scott Adams
      Gluten-Free Newbie

      By Scott Adams · Posted

      Welcome to the gluten-free journey—it sounds like you’ve been through a lot, but it’s great to hear you’re feeling better since cutting out gluten! The struggle to get clear answers can be so frustrating, especially when tests come back negative but your body is clearly reacting. It’s smart to hold off on retesting for celiac until you’ve reintroduced gluten (if you choose to), but in the meantime, listening to how your body responds is key. The overlap with perimenopause and gut issues is no joke—hormones really do throw everything into chaos! It’s awesome that you’re working with a kinesiologist and focusing on whole foods; that’s helped so many of us here too. And yes, eating out is a minefield. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • trents
      Anyone From South Africa

      By trents · Posted

      @Izelle, you are welcome! It is important to know that beginning the gluten-free diet or even a reduced gluten diet previous to celiac testing will invalidate the testing. One should seek out testing before experimenting with eliminating gluten. Also, remember that celiac disease is not a food allergy. It is an autoimmune disease. When a celiac consumes gluten it triggers an autoimmune response that damages the lining of the small bowel. That can be confusing to a lot of people because it is an autoimmune response that involves food. So, allergy testing is of no use in diagnosing celiac disease. Of course, people can also have allergies to wheat, barley or rye (the three gluten-containing grains) but that is an entirely different immune system response.
    • cristiana
      Gluten Intolerance And Low White Blood Cell Counts?

      By cristiana · Posted

      Hello Suze and welcome to the forum. Can you tell us which country you are posting from?  The reason I ask is that in some countries, it is quite a good idea to be tested for coeliac disease because if it turns out you are a coeliac, you will be given additional support by the government.  For example if you live in the UK, the NHS offers support from a nutritionist, DEXA bone scans to check for osteoporosis/osteopenia to which coeliacs are sometimes prone, additional vaccinations against certain illnesses, annual reviews with a gastroenterologist to check for dietary compliance and possible health complications, and, in some regions, a prescription to help with the purchase of gluten free bread and other staples, which can be pricey. Another example is Italy.  According to the Celiac Disease Foundation, in Italy, coeliacs are given up to 140 Euros a month to buy specifically gluten free food.  (Source: https://celiac.org/gluten-free-living/global-associations-and-policies/policies-around-the-world/#:~:text=Diagnosed celiacs receive vouchers to,to deal with celiac disease.) But with regards to your white blood cells, my levels were similarly low from memory a couple of years ago during a period of quite high stress.  It was picked up in a pre-op blood test.  But nobody blinked an eyelid at the results.  A few months later at my coeliac review with my gastroenterologist the levels had normalised.  As you are concerned, do raise it with your doctor, but it could well just be a blip as it was in my case.      
×
×
  • Create New...