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

Just Diagnosed From Blood Test

kunger

Recommended Posts

kunger Rookie
kunger
Posted

I was just diagnosed with celiacs. My mom has celiacs and it was strongly recommended that I also get tested. My blood report came back positive and I don't know if I should get a biopsy or not. I had a hysterectomy about three weeks ago and I seem to be showing some symptoms all of the sudden. My lips are burning, foggy head, stomach hurts and digestive issues. Is it common for symptoms to come on quickly like this? I have been doing some research and some people did say that after a surgery their body had a hard time healing and that is when the symptoms came. I have never exhibited any celiac symptoms until a couple of days ago. I haven't gone on a gluten-free diet yet because I need to decide if I am going to get a biopsy or not. Any suggestions will be greatly appreciated.

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Hi kunger,

Yes, people have posted multiple times about symptoms showing up suddenly.  After surgery, after illness of some kind, after stress.  Then again sometimes symptoms show up for no apparent reason.  Other people have celiac disease for years with no GI symptoms.  They call that silent celiac disease.

You are right to stay on gluten until all testing is done.  Most doctors won't actually give a celiac disease diagnosis without a biopsy/endoscopy.  Some people find it easier to stick to the gluten-free diet if they have the diagnosis,

If you go gluten-free and then decide later to get the endoscopy, you will have to do what's called a gluten challenge.  That means eating gluten again for a period of several weeks.  Most people report having worse symptoms after going gluten-free and then going back on it for a gluten challenge.  So its easier to do the endoscopy now rather than later.

ravenwoodglass Mentor
ravenwoodglass
Posted

Syptoms can come on suddenly and it is pretty common to see symptoms increased after a severe stressor like a surgery.

Talk to your doctor. If your blood tests were strongly positive he may give an official diagnosis based on your relief of symptoms gluten free, drop in antibodies on repeat panel and family history. It is important to have that official diagnosis so do not go gluten free until after you know if you are going to opt for the biopsy.

kunger Rookie
kunger
Posted
  • Author

Thank you for the reply. Do you suggest getting the biopsy? It seems that some people are for it and others don't see a need if your blood test came back positive. I don't have a doctor that really knows much about celiacs and they made an appointment for me to see an ARNP in the GI department. I feel like the appointment will be a waste of time.

cyclinglady Grand Master
cyclinglady
Posted

Seems like you are on the fence.  

Here is my story.  I was anemic my whole life.  Finally, during routine GI consult, he suggested celiac disease.  I was shocked.  No way!  I had no tummy issues.   My hubby had been gluten free for 12 years based on what we know was rather poor advice from my allergist and his GP (worked, but we do not know for sure if he has celiac disease).  I knew how hard it is to be gluten-free.  I needed a firm diagnosis.  Hubby will tell you that I have way more support from doctors, family and friends.  No eye-rolling, etc.  

Only you can decide.  The nice thing about the endoscopy is that they can check for other things.  You can have IBD, SIBO, H. pylori, cancer (very very rare), etc.  

I wish you well.  

 

GFinDC Veteran
GFinDC
Posted

Hi Kunger,

I think it's nice to know for sure, but then again you don't get any gold star for getting an endoscopy.  Or get to eat any differently.  Sometimes people have children or relatives and want the endoscopy to be able to encourage them to get tested.  Then there are clinical trials that usually require a diagnosis via endoscopy.  Not everyone is interested in doing clinical trials though.  In the UK I think they have a tax exemption of some kind if you are diagnosed.

I think some people might find it easier to stick with the gluten-free diet if they are fully diagnosed.  I didn't get an endoscopy myself because I had been gluten-free for 4 months before my GI appointment.  I was beginning to feel better and had to work, so didn't want to do the gluten challenge.

I don't know if that helps any.

  • 2 months later...
cyclinglady Grand Master
cyclinglady
Posted
On October 4, 2016 at 10:30 AM, kunger said:

Thank you for the reply. Do you suggest getting the biopsy? It seems that some people are for it and others don't see a need if your blood test came back positive. I don't have a doctor that really knows much about celiacs and they made an appointment for me to see an ARNP in the GI department. I feel like the appointment will be a waste of time.

Exactly what celiac blood tests were taken?  A genetic test will only help rule out celiac disease and not diagnose it.  Why?  Because  about 1/3 of the population carries the genes, but only a very few go on to actually develop celiac disease.  

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748
    ChrisMary
    Newest Member
    ChrisMary
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      All of a sudden I can't get any gluten-free nuts. There are only 2 nuts available that I can find on the market that are gluten-free. One is Mauna loa brand macadamia nuts, the other is Wonderful pistachios. Other than that all types of nuts that are plain nuts, roasted or raw are no longer gluten-free and are processed and plants that also process wheat.  Has anyone found a source for Pecans, almonds peanuts, walnuts, Pine nuts, etc that is gluten-free?
    • knitty kitty
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By knitty kitty · Posted

      @Xravith, How are you doing?   Two cookies are not enough.  For testing, you need to be eating a minimum of ten grams of gluten for two weeks minimum before testing for Celiac antibodies.  Ten grams of gluten is roughly five or six slices of gluten containing bread per day for two weeks minimum. Breads that contain lots of gluten typically have large bubbles formed by gases escaping during baking.  Gluten helps form those bubbles of trapped gases, like a balloon.  Artisan breads, and thick, chewy pizza crust are good examples.  Look at the size of the bubbles in cakes and cookies.  Small bubbles, so not lots of gluten in them.  You'd have to eat tons of cookies to get ten grams.   Antibodies are made in the small intestine. If you eat at least TEN grams of gluten for at least two weeks, then there will be sufficient antibodies to move into the bloodstream, which can be measured in antibody tests.   If you eat less than ten grams of gluten daily, you will get celiac symptoms, but not enough antibodies will get into the bloodstream to be measured, resulting in false negatives.  Anemia, diabetes, and thiamine deficiency can also affect testing, resulting in false negatives. Since you are having such difficulty consuming sufficient quantities of gluten, you should consider getting a genetic test done.  You do not have to eat gluten to have a genetic test done.  Celiac is inherited.  It's in your genes.  Genes don't change whether you eat gluten or not.  A genetic test looks for the most common known Celiac genes.  If you do not have the genes, your doctor can look for other health conditions that can be causing symptoms.  If you do have Celiac genes, you can assume that those genes are actively causing symptoms.  An endoscopy to check for the amount of intestinal damage caused by Celiac Disease is usually done.   You should also be checked for nutritional deficiencies.  Ask for an Erythrocyte Transketolace Activity test, which checks for Thiamine deficiency.  Thiamine, Vitamin B 1, is one of the eight essential B vitamins.  Thiamine can become low quickly because our bodies use so much of it everyday.  If we're not replenishing Thiamine daily from our diet or because of malabsorption, we can become seriously ill.  Same with the other seven B vitamins.   Doctors are not familiar with nutritional deficiency symptoms as can occur in Celiac disease.  Please get checked for nutritional deficiencies.  Ask for the Erythrocyte Transketolace Activity test soon. Please let us know how you are doing.  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
×
×
  • 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.