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Lip Issues?


Retrotea

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Retrotea Newbie

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.)

  • 1 month later...

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IrishHeart Veteran

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.

mommyto2kids Collaborator

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.

IrishHeart Veteran

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.

JNBunnie1 Community Regular

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.

Stubborn red head Apprentice

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

  • 3 weeks later...
peaches987 Newbie

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.


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    • trents
      Yes, there is a trend in the medical community to forego the endoscopy/biopsy and grant an official celiac diagnosis based on high tTG-IGA antibody scores alone. This trend started in the UK and is spreading to the USA medical community. And yes, 5-10x the normal level is what I have been seeing as the threshold as well. Here is the relevant section dealing from the article above dealing with the importance of the total IGA test being ordered. See the embedded attachment.
    • hmkr
      Ok, interesting. Not what I was thinking that meant. I'm reading the article and trying to understand. I see this “According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy” My IgG is 90, which is 6 times. So to me that means it's highly likely I do have it. 
    • trents
      It just means you aren't IGA deficient, i.e., that IGA deficiency cannot have given you artificially low scores in the individual IGA celiac antibody tests. This is explained in the article Scott linked above.
    • hmkr
      Normal range: 70 - 400 mg/dL, a little above middle of the range. So what does that mean? Thank you! I will check out that page you linked. Appreciate it! 
    • trents
      Well, the only thing I would conclude with would be, if you choose not to trial the gluten free diet, is to encourage you to get periodically tested, either antibody blood tests or the biopsy or both. I think it something that needs to be monitored.
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