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

What do I call myself? Celiac? Non celiac gluten sensitive?


mellymom

Recommended Posts

mellymom Newbie

I went gluten free years ago because of some autoimmune problems, joint pain, bloating, digestive issues, fatigue.

 

After some time, I also eliminated dairy for the most part because I thought it was causing me new bloating and digestive problems.

 

Then I realized I was replacing all of the dairy products I used to have with oat milk products.i recently found out that all of the oat products that I was consuming was probably the thing that my body was reacting to as if I was still eating gluten. (More on that later in the post, eliminating oats seems to be the ticket to healing)

 

In January I started with a little patch of eczema on my lower leg. Within a few months I had it from my ears to my ankles. A dermatologist diagnosed me with nummular eczema. He gave me a 16-day course of Prednisone which of course made almost all of it go away. The last few days as I was almost tapered off of it, everything started to come back and it came back worse than I had it before.

 

At this point I went back to my chiropractor / functional medicine doctor for a GI map test. I already knew I was struggling with sibo from a test I had last october. The GI map came back with high Candida albicans and high anti-gliadin, and some other bacteria and yucky stuff. They prescribed me the natural supplements that they would normally give but they also told me to go to my do and ask him for an oral antifungal. My do put me on 2 weeks of nystatin.

 

In addition to a Paleo autoimmune diet, I have added the Candida diet to my list of eliminations. I have eliminated legumes, moldy nuts, dairy, fermented products, almost all fruit, corn, white potatoes, rice of any kind and of course any other grain.

 

By the time the two weeks of Nystatin was up my eczema was starting to recede slowly in places. It's now been almost 2 months and I am still healing from the eczema. My skin is so much greatly improved from what it was, but I still have a little ways to go.

 

All this to say, I don't know if I have Celiac or non-celiac gluten sensitivity. At this point I will never eat it again for a gluten challenge or anything. What should I call myself when I'm trying to explain to others why I can't go to certain restaurants or eat certain foods? It seems dramatic of me to say I'm a Celiac if I don't have a proper diagnosis but at the same time it seems like too long of an explanation to say I'm not Celiac gluten sensitive 🤣 funny not funny.

 

Also I have five children. Two of them eat gluten-free. What would I watch out for in my children for whether or not they have a sensitivity or celiac?

 

Does anyone have any other advice for me based on all that I babbled on about?

 

Hopefully I didn't sound like a bumbling goofball and I made some sense. 


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



Celiac.com Sponsor (A8-M):



Wheatwacked Veteran

10 to 40% of first degree relatives have celiac. A Complete Celiac panel periodically seems appropriate. Even better would be the whole family eat gluten free. It can happen any time. My son was a three month old, I was 63. Giving up gluten is hard because of the addiction aspect and staying gluten free is hard because of peer pressure. 

You are not making it up. This is not, as one of my former doctors said "a life style chioce." If you eat gluten you get sick, 'nuff said. Just pity those that continue with gluten while becoming diabetic and obese, all the while blaming growing old. (Or protein, fat, cigarettes, drinking, the ozone layer or anything else that lets them maintain their addiction. The only thing wheat is really good for is lining the pockets of agribusiness.  Sorry, I've let my vitamin D level drop for a few weeks and it makes me grumpy.

Here's a fun thing. See how angry people get when you suggest they should try gluten free for two weeks. It the same line used when trying to get someone to admit they are alcoholic. Firm denial and anger.

 

trents Grand Master

Concerning your main question, I would opt for, "I'm gluten intolerant". That would be be a true statement and is broad enough to cover both celiac and NCGS. Besides, most people just give you a blank look when you say, "I have celiac disease". And "intolerant" conveys a more vigorous problem with gluten than "sensitive". 

How old are your children? If they are adults I would "suggest" to them who are still consuming gluten to get antibody tested for celiac disease. You can always wait for symptoms but the problem is with some people there are no symptoms early on and by the time they exhibit symptoms there has been a lot of damage done to body systems. We call them "silent" celiacs.

If you get no cooperation from the medical community with regard to testing of asymptomatic children, there are home test kits available commercially from companies like imaware for around $100 US.

Wheatwacked Veteran
(edited)

How about this? "I can't eat anything with wheat, barley or rye. I don't know why. The doctors don't know why. Only my maker knows, and if you guys keep pressuring me to eat it, I'll be able to ask my maker in person that much sooner" 😁

Edited by Wheatwacked
Scott Adams Grand Master
19 hours ago, mellymom said:

In January I started with a little patch of eczema on my lower leg. Within a few months I had it from my ears to my ankles. A dermatologist diagnosed me with nummular eczema. He gave me a 16-day course of Prednisone which of course made almost all of it go away. The last few days as I was almost tapered off of it, everything started to come back and it came back worse than I had it before.

Welcome to the forum! 

You very well could have eczema, however, some people on this forum were misdiagnosed with eczema when they actually had dermatitis herpetiformis. If your rash includes very tiny, hard, clear blisters that are incredibly itchy, consider having your dermatologist do a biopsy on them for DH. If you do have DH, even the smallest cross-contamination that can often happen if you eat out could be enough to keep your autoimmune reaction going strong.

mellymom Newbie
2 minutes ago, Scott Adams said:

Welcome to the forum! 

You very well could have eczema, however, some people on this forum were misdiagnosed with eczema when they actually had dermatitis herpetiformis. If your rash includes very tiny, hard, clear blisters that are incredibly itchy, consider having your dermatologist do a biopsy on them for DH. If you do have DH, even the smallest cross-contamination that can often happen if you eat out could be enough to keep your autoimmune reaction going strong.

I mentioned that to him when I went in and he acted like he just disregarded my comment. 😫

 

He actually thought I had scabies. But after a very embarrassing and thorough examination, and skin scraping he determined it was not scabies, it was not fungal, and because of the overall appearance it was an nummular eczema. I have lots of pictures along the way that I could share if it would help anybody who's experienced it as well. 

 

 

I wish I would have just pushed for the biopsy. 

Scott Adams Grand Master

It is possible you have both, but I don't want to second guess your doctor. Many people who have eczema have reported improvement of their symptoms on a gluten-free diet, and it would be interesting to see how your symptoms are after a 100% gluten-free diet for a few months. Please let us know how things go.


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



Celiac.com Sponsor (A8-M):



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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,542
    • Most Online (within 30 mins)
      7,748

    NoemiMG
    Newest Member
    NoemiMG
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • PixieSticks
      Hi yes! I was diagnosed 10 years ago through a biopsy. I’ve been gluten free ever since but no one I’m around is gluten free. I sometimes wore a surgical mask in the kitchen. but I believe particles were still getting through. I’ll definitely look into n95 instead. thanks for the reply. 
    • BoiseNic
      Ya I used to react to iodine, but it doesn't bother me anymore after strict adherence to a gluten-free diet for many years now. I am happy to report that for the first time ever in my life, a probiotic formula is not making me break out, but actually seems to be helping. The strains in this formula have been specifically tested to help with skin issues. It is gluten and dairy free also. 
    • knitty kitty
      @Whyz, I take a combination of Thiamin (Benfotiamin), B12 Cobalamine and Pyridoxine B6 for my pain and headaches.  Really works well without hurting the digestive tract.  Riboflavin B2 also helps with migraines.  Most newly diagnosed people have vitamin and mineral deficiencies.  Check with your doctor and nutritionist.   If you follow the updated gluten challenge guidelines, you can wait until two weeks (minimum) before your appointment, then eat lots of gluten, like six slices of gluten containing bread or "name your poison".   Here's the Updated Gluten Challenge Guidelines: Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer. While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.   Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.   References: https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/ And... Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader  "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced." Keep us posted on your progress!
    • Scott Adams
      I don't believe that existing life insurance policies require such notifications--health checks are typically done before such policies are obtained. I believe it would primarily affect any new policy you get, and perhaps any policy renewal.
    • Scott Adams
      You could go gluten-free now, and then start eating lots of gluten for at least 2 weeks before your endoscopy--just be sure to tell your doctor about this beforehand. If your symptoms go away on a gluten-free diet, it is further evidence of celiac disease and/or non-celiac gluten sensitivity.  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.  
×
×
  • Create New...