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

What To Do Next?

nobeer4me

By nobeer4me
in Doctors

Recommended Posts

nobeer4me Apprentice
nobeer4me
Posted

I have been gluten free for a few months now. But latley I have had some

re-occouring symptoms. I was found to be positive in a blood test in one catagory out of six. My doctor said I should have a biopsy done on my small intestine to be sure. But I understand that being on a gluten free diet may give the test a false reading.

My symptoms are not in my digestive system, but rather a condition called errosive oral Lichen Planus, which has caused my gums to recead, and sores which seem to have trouble healing. I am still on medication(from a previous doctor) which is a steroid mouth rinse, which helped for a while.

When I went gluten free. things got a lot better, although I was still taking my medication at a fraction of the amount as before.

To sum it up: I am still gluten free, can't completely shake my medication.

And wondering if I should go back on gluten to get the biopsy done?

Just wondering If I really have Celiac, or is something else causing my trouble?

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

Were you gluten free when you had your original testing done? Which test came back positive? The tTG and EMA are very specific for celiac.

If you want a biopsy you need to go back on gluten for a good 3 months, eating gluten heavily.

Could you be getting gluten in your diet somehow? Could you be getting in through products like shampoo? Or have you changed products too?

Were the symptoms getting better for a while and then started up again or have they never gone away.

Also, with celiac it may take alot of time for symptoms to go away. It took me 3 months to have significant changes and then a couple more months to get back to normal.

Hang in there and if you have any questions feel free to ask :D

nobeer4me Apprentice
nobeer4me
Posted
  • Author

My dentist was the one who originally told me about Celiac disease, and changing my diet may help. So I started avoiding gluten about a week before my blood test.

My Dr. said it wouldn't affect the test. I will have to call my Dr. to find out which catagory was positive. Its possible I may have some contamination, but I'm trying my best to avoid gluten. I didn't know that shampoo may have gluten. Does it just seep into you, since you obviously don't drink it? Here is something else that came back to me the other day. As a teenager I remember having some allergy tests done because my sinuses were bothering me at the time. At that time the DR. said I was allergic to wheat, rye, corn, chocolate, dogs and cats. We have 2 cats, and I am basicly living on corn. <_<

KaitiUSA Enthusiast
KaitiUSA
Posted

Shampoos and soaps and things like that contain gluten. What happens with shampoo is it just has a high chance of getting into your mouth while washing your hair.

With soaps...say you wash your hands with gluten containing soap and then prepare your food...now the food has gluten on it.

There are just alot of avenues that are possible with getting gluten in you.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    2. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    3. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    4. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    5. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,858
    • Most Online (within 30 mins)
      7,748
    Beckyq
    Newest Member
    Beckyq
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.