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

mellymom
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mellymom Newbie
mellymom
Posted

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. 

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Wheatwacked Veteran
Wheatwacked
Posted

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
trents
Posted

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
Wheatwacked
Posted
(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
Scott Adams
Posted
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
mellymom
Posted
  • Author
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
Scott Adams
Posted

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.

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