• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:

    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:

       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Rate this topic

Recommended Posts

Feel free to move this into a new section since I'm new here.

I have had issues with health for years and recently, around christmas, I had blood test results come back saying I am one number from being technically "celiac." You need an 11 or higher to be counted as "positive" and I have a ten. Can't remember exactly what the number represented, some type of antibodies? I forget quite honestly.

Also very low on b12 and vitamin D. I started taking a bunch of vitamin recommended by a holistic doctor I go to..but I don't think I absorb anything.

I didn't think celiac was really that bad until recently I've been having bloating problems, stomach issues, etc. And recently, last week, I've been having this really strange lip issue. First it started out that my lips were really dry for the first two days and when I drank pop my upper lip felt tingly and numbish. Then the third day I woke up and my upper lip(not the outside, but the inside by gums)was swollen and hurt. The next day I woke up with blood crusted on my lips, painful, still swollen, etc. Little bits of skin came off when I rubbe da wet washcloth over my lip to clean it.

Every day the pigment of my lip inside has gotten more and more red. It feels like the entire inside is burned and I lost a layer of skin. I noticed at lunch in my cars mirror that the red pigmant is literally spreading onto my gums. The part above my two front teeth is much more read than any other part of my gums. It's literally "spreading."

I'm only 17, nearly 18, and can't really afford a gluten free diet or anything, etc. I am hoping to get vitamin b12 shots since it will be directly into my blood stream. I assume since I'm having more and more syptoms that number of antibodies(or whatever it is) is probably getting higher and I'm getting worse. :X

Anyone know what this is? I do have another holistic doctor appointment this wednesday as a checkup. (I'm scared to admit to her I haven't improved my diet too much.)

Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

If you have Celiac, you need to be on a gluten free diet, hon.

No excuses.

Celiac disease is not curable, but it is treatable by a strict gluten free diet. That's it.

This is not something you can do once and while.

It will not do any good to take B-12 injections if you are continuing to ingest gluten. The gluten is CAUSING the deficiency in the first place.

You have symptoms because you are not following the diet.

From your confusion, it appears you do not really understand the disease process, what gluten antibodies are, etc. and you need to learn about celiac disease right now.

Start reading, because this is for life.

WHO diagnosed you? That doctor should have told you EXACTLY what to do. When you say "Holistic"--do you mean a Naturopathic Doctor?? or a Medical Doctor who is also integrative?

You should see a medical doctor --preferably the one who diagnosed the celiac--right away about those sores.

Share this post

Link to post
Share on other sites

The medical Dr. may not know anything. Mine didn't regarding celiac, absolutely stupid. The blood test just came about 10 years ago and mine know nothing. Can you see a demitologist? My dentist is clueless about celiac too. He has no clue that celiac causes emamal to deteriorate. So you need to see first the Dr. that did your blood test, then a dermitologist.I've heard some know about celiac. And I agee with the others, get rid of the holistic one. Eating gluten free can be cheap if you want it to be. It just takes planning and that is the hard part.

Share this post

Link to post
Share on other sites

I was thinking, if your gums are sore and "peeling", you could also have periodontal disease.

My lips often peeled and I had sores on my mouth and inside--from gluten.

See the doctor who diagnosed your celiac right away!!

Since you are a minor, can you get your parents on board with the gluten -free diet?

Surely they understand you have this disease.

Share this post

Link to post
Share on other sites

My lips peeled and shredded for over a year before I found out about gluten and went gluten free. I used to use a steroid ointment to treat the pain it caused, it completely went away when i had been gluten free for a few months.

Share this post

Link to post
Share on other sites
Ads by Google:

do you use lipstick? if so there might be gluten in it causing this issue.

I'm new here at this board so I'm not sure if, as a 20-something, I still count as a 'young adult [???]'. But anyway, here's my answer: I was getting sores inside my mouth ALL the time before I was diagnose with celiac (by blood test and endoscopy). That went away about a month after I started going gluten free.

As for doctors: My regular doctor is awesome, but my gastroentrologist talks to me for five minutes and then sends me out the door. I don't feel like I get much in the way of an exam with him. And my dentist was completely clueless about what celiac really meant. He thought it was the same thing as 'lactose intolerant'. To which I had to say, no one gives you a tummy ache and the other prevents me from absorbing the food I eat, causes malnutrition, my severe anemia, and could cause a bunch of awful cancers if not taken seriously. People are so ignorant about celiac, it's not even funny.

Share this post

Link to post
Share on other sites

Ads by Google:

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • More and more, people are adopting a gluten-free diet due to perceived health and weight-loss benefits. A team of researchers recently set out to ask people with celiac disease and non-celiac gluten sensitivity about their views on the health effects of gluten, and safety of vaccines and gluten-free food products. View the full article
    • Welcome!   Get that follow-up testing.  At least help  confirm that you are compliant with the diet and that celiac disease is not the root cause of your brain fog and anxiety.  Once ruled out, your doctors can focus on other possible AI issues that are beyond your control (unlike celiac disease).  For now, you can focus on a good healthy diet.  Consider a modified AIP diet.  I just read a study involving this diet and IBD (autoimmune) done by Scripps in San Diego.  There was a 77% remissions rate.  Amazing!  This can (in theory)  be applied to other autoimmune issues.  It helps to validate that diet can heal.   http://journals.lww.com/ibdjournal/Pages/ArticleViewer.aspx?year=2017&issue=11000&article=00021&type=Fulltext here are some follow-up guidelines: http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ Hang in there.  Consider Ennis’ tips too, but I prefer and do well without supplements.  My doctor has checked me for deficiencies and so should yours.  You need to really  figure out what is best for you (food, supplements, etc.) 
    • I have seen info that children's antibodies can drop very quickly.  The lucky little guys!
    • I think if you search through this section of the forum, you will find that many children see a quick drop in their antibodies.  Recovery can come fast or slow  in both kids and adults.  We are all different!   I can tell you that my antibodies are still high, yet I had a repeat biopsy done last week showing healthy villi (Marsh Stage IIIB at diagnosis five years ago).  So, here I was beating myself up for having elevated antibodies which made it look as if I was not diet compliant, and I was actually healed.  Researchers  have not done a lot of studies about repeating the antibodies tests after diagnosis to monitor progress (lack of funding for sure).  Repeat antibodies testing is not perfect, but it is the only tool in the box right now.   We suspect my antibodies (DGP IgA only positive on the panel ever)  are up for other reasons (e.g. my Hashimoto’s, another AI issue, residuals from a previous gluten exposure).   I do have symptoms but these were attributed to other  things including chronic gastritis which, since I do not have active celiac disease, h. Pylori, drink alcohol, and am allergic to NSAIDs and other meds, is probable autoimmune.   Great job on keeping him safe!  I am glad he is feeling better.  He is seeing results from the diet which helps confirm the diagnosis.    Systemic issues can take longer to heal, so just keep moving forward.  
    • Magnesium, B-vitamins, Vitamin D etc. Should probably be supplemented. For the fog, stress, brain issues I swear by my regime of Liquid Health Stress & Energy, and Liquid Health Neurlogical support 1tbsp each 3 times a day in a beverage before a meal. Works wonders, magnesium is also wonderful, you did not mention constipation or D so I do not know which is best for you. There is Doctors best and Natural Vitality, Doctors best works great for relaxing and is easy on the gut but Natural Vitality is easier absorbed but can be harsh on the gut, it also is great for constipation. Doctors you dose as it tells you, Natural Vitality, you start off at 1/4 tsp and up it slowly to full dose over 1-2 weeks.
      Liquid Health also makes Vitamin D3 in a sublingual form. ALL of these can be found on Luckyvitamin.com and on Amazon.
      These will help with you fog, and anxiety.
  • Upcoming Events